This left me with my trusty headlamp, my speculum, and sperm donated by an old friend from growing up — a gay man who also planned to love my baby. In what was becoming our own weird tradition, I cooked him dinner and then left to walk my dog while he ejaculated into a red plastic solo cup. After my friend let himself out of my apartment, I began “washing” the sample he left on my bathroom counter, a procedure that separates the sperm from the semen surrounding it, using a $60 centrifuge I purchased from a science supply store.

Get TalkPoverty In Your Inbox

I tried to inseminate at least twice per menstrual cycle, and it became so routine that my friend once accidentally blurted out that he needed to go jerk off at my place when a coworker asked why he wasn’t staying late for a team dinner. It was pure queer magic. I became pregnant after nearly a year of this.

My pregnancy, sadly, ended in stillbirth, for reasons totally unrelated to how I became pregnant (I contracted cytomegalovirus, a common virus that causes mild cold-like symptoms in adults but can be lethal for a fetus). Like many relationships that are tested by stillbirth and grief, my friend and I are no longer close. Certainly not close enough to resume trading a home-cooked meal for a party cup of semen.

Adoption was actually my first choice for parenting, but it is not friendly to low-income people. It often costs $20,00 to $40,000 or more for private domestic adoptions, and fostering or adopting through the deeply flawed child welfare system involves an extensive assessment process that costs around $900 to $3,000. Though grants and other forms of financial assistance are often available for the assessment itself, it’s likely that evaluators would count my poverty, my small apartment, my queerness, my disability, my background and beliefs as a radical activist, and even my sweet old pit bull as strikes against me. So for me to be a parent — for me to get to experience the sweetness of morning cuddles, the endless questions and challenges, the beautiful and mundane care work of guiding new life across a dying world — pregnancy is my best option.

However, without the ready access to fresh sperm that my friend provided, getting pregnant again will be expensive as hell. In addition to purchasing the sperm itself, which often retails for more than $850 a vial, there are storage fees ($350 per year), shipping fees ($180), and fees for viewing donor profiles ($50 for three months). All for a single attempt at insemination.

And it usually doesn’t stop at just one vial: Even for people in their 20s and early 30s, when it is generally easier to conceive, IUI has a success rate of less than 20 percent per attempt, and typically needs to be tried multiple times. In fact, in one study, only 24 percent of people had a live birth after 3 cycles of IUI, even when they attempted two IUIs per menstrual cycle. And while the birth rate rises with more IUI attempts, so does the cost.

In other words, even assuming the bare minimum cost for each IUI attempt, three attempts at IUI could cost $3,490, for a one-in-four chance of becoming pregnant.

And that’s just the sperm. Conception-related health care is also expensive, with costs for IUI in a clinic ranging from $250 to $4000 per attempt. Fertility specialists recommend moving to in vitro fertilization (IVF), which begins at $12,000 to $15,000, after three unsuccessful IUI cycles. Insurance companies, however, often demand that prospective LGBTQ parents “prove” their infertility by paying out of pocket for six or more in-clinic IUIs before providing insurance coverage for IVF (self-insemination doesn’t count towards this total). This means that, even with insurance, queer people might have to spend over $30,000 ($6,580 on sperm and another $24,000 on clinic fees) before their insurance begins to cover fertility care. (Straight, cisgender couples, in contrast, typically receive coverage if they report having unprotected sex for 6 months to a year.) For people who rely on surrogacy, the costs often start at six figures in the U.S.

These costs are obviously not an option for low-income people. So, we either don’t have kids or we get creative. Hence the duct tape.

Studies show that queer people want children at the same rate as straight people, but our access to parenthood is limited by our statistically lower incomes and, for those of us who don’t produce it, the price of sperm. The high cost of fertility treatments like IUI is often significantly, disproportionally burdensome for queer people, who are more likely than our cishet counterparts to live in poverty, especially if we are people of color, trans, gender nonconforming, or women.

Queer people like me are also more likely to have or acquire disabilities — in my case a brain injury from police brutality. Disabled people are almost twice as likely to experience poverty, with even higher poverty rates among disabled women, gender minorities, LGBTQ folks, and people of color. People who receive certain disability benefits can lose them if they ever amass assets worth more than $2000, which prevents disabled people from saving up for sperm, pregnancy, or parenting.

Sperm banking is a big business, with profits reported at almost 4.8 billion globally. Sperm banks are just one facet of the rapidly growing — and incredibly profitable — fertility industry, valued at 8 billion dollars in the U.S. alone. This industry is prone to predatory behavior, and increasingly controlled by venture capitalists.

Regulation might help with this, especially if it was designed to explicitly protect queer families and other oppressed groups. In addition, there is no reason to require people to undergo psychological evaluations (another expense) nor get a physician’s permission to purchase and receive sperm, though many sperm banks and clinics do.

Currently, just one state (New York) extends fertility coverage to people on Medicaid, the largest insurer of people living in poverty; fertility coverage for people on Medicaid must be extended nation-wide. Further, only 19 states mandate that private insurance companies cover any kind of fertility-related services. As described above, insurance industry policies often result in queer people having to pay dramatically more for care than straight couples.

A recent lawsuit against Aetna Health claimed this disparity constitutes a violation of Section 1557 of the Affordable Care Act, which bans insurance companies and health care entities from discriminating on the basis of sex. Though Aetna updated their policy within days of the lawsuit, Section 1557 should continue to be applied to ensure equitable treatment of LGBTQ health care consumers, including when it comes to building our families. I also want more legislation, such as the law recently enacted in Illinois, designed to prevent queer parents from having to pay more than our cishet counterparts to access fertility treatment.

Until we have equitable policies that protect us, queer people will care for each other, including helping each other build families. I started teaching friends and neighbors in my local queer community how to wash sperm and perform IUIs on themselves and their partners, usually in exchange for beer and pizza. Many of my friends were using known donors for the same reasons I had: cost. Even folks who were using sperm banks often wanted to do their own IUIs to save money after the outrageous amount they had spent acquiring each precious vial of semen.

I still dream of parenting, but it seems more and more out of reach as I approach 40 and my credit card debt gets worse, not better. I know I’d be a good parent, in that I would love my child hard, with the same drive that had me taping a mirror to my bathtub and processing semen in a centrifuge meant for high school chemistry classrooms. What stops me is not doubt, or even exhaustion, but the cost of being beautifully queer in a world that privileges heterosexuality.

Get Talk Poverty In Your Inbox

The rider is named after Jessica Grubb, a Michigan woman who died at age 30 after being prescribed oxycodone for postoperative pain while only a few months into recovery from a seven-year heroin addiction. The Protecting Jessica Grubb’s Legacy Act was sponsored by Democratic Senator Joe Manchin III and Republican Senator Shelley Moore Capito, both from West Virginia, one of the states hit hardest in recent years by an influx of illicitly manufactured fentanyl. Currently, under 42 CFR Part 2, patients engaged in substance use disorder treatment programs that fall under federal purview — which essentially includes any program that utilizes opioid agonist pharmacotherapy like methadone and buprenorphine — must provide informed consent each and every time their records are shared. So when a patient authorizes a methadone program to share medication information with their primary care doctor, that provider can’t disclose the information to a specialist unless the patient signs a new, specific consent. When the act goes into effect in 2021, patients will only have to provide consent once. After that, their records can be re-shared in perpetuity by any health care entity who receives them.

The changes reflect the way privacy and consent are handled for most of health care. The act is effectively changing records disclosure consent rules to match those of the Health Insurance Portability and Accountability Act (HIPAA), except that it still preserves the initial consent required by 42 CFR Part 2.

Despite popular belief, HIPAA allows health care workers to share patient records without their consent for a number of reasons related to health care operations. “HIPAA is not a [patient] privacy protection. It’s actually an authorization to share your info as broadly as a health care payor believes they need to share it, which I will tell you is very broad,” explained Danielle Tarino, president and CEO of Young People In Recovery, who previously worked at the Department of Health and Human Services and, while there, drafted the 2017 revisions to 42 CFR Part 2.

Now, instead of special protections for patients undergoing addiction treatment, these programs will have the same privacy standards as all of health care.

The fight for privacy rights has divided key players in the addiction treatment community, many of whom are otherwise aligned. Proponents of the changes include the National Council of Behavioral Health, the American Society of Addiction Medicine (ASAM), the Substance Abuse and Mental Health Services Administration (SAMHSA), Shatterproof, and several other prominent treatment and health care voices. Those who oppose it, a group that includes the National Alliance for Medication Assisted Recovery, Legal Action Center, Young People In Recovery, and Faces and Voices In Recovery, have successfully thwarted similar proposals in the past.

“It’s just really disappointing to see that bill go through when the political will was, year after year after year, it’s not going to pass because people don’t want it to pass,” said Tarino.

Those who favor the changes say that not only will this make it easier for health care providers to share patient records, it will also allow these programs to be used in the electronic health records programs that are currently designed to meet HIPAA standards. Senators Manchin and Caputo argued that this kind of care coordination would prevent patients like Jessica Grubb from being “thrown back into the nightmare of addiction,” and insinuated that these privacy changes could have prevented Grubb’s death by ensuring all of her caregivers were informed about her addiction history. “There’s emergency glass that could be broken if someone was not able to disclose,” countered Talbott. “The notion Part 2 could cause what happened to Jessica Grubb to happen is outrageous…She disclosed [her addiction status], as most people do with their treatment providers.”

“42 CFR Part 2 said ‘if you go to treatment, we will give you the security and confidence to work on your issues,’” said Westley Clark, Dean’s Executive Professor in the Department of Psychology at Santa Clara University and the former director of the Center for Substance Abuse Treatment (CSAT) within SAMHSA. “Why would I go to treatment if they are going to blab my business all over town? We have a conundrum: We want people to go to treatment, but we are going to discourage people from seeking treatment by telling them ‘your privacy is irrelevant.’”

Part of what made these protections so strong was the re-disclosure rule eliminated by the Jessica Grubb’s Legacy Act. If a patient signed a consent so that their treatment provider could share pertinent care records with their insurance — a requirement in order to have insurance pay for treatment — then those records could only be shared with the insurance provider. Now, a patient’s insurance can re-disclose those records in perpetuity for a number of reasons, including for the vague and effectively ubiquitous use of “health care operations.” This likewise applies to anyone to whom a patient has granted consent.

The language of the new law explicitly states that patients have the right to revoke consent at any time. The problem is that patients must know they need to do this, and also, once records have been shared widely enough, it becomes virtually impossible to communicate and enforce that revocation. Privacy proponents worry that this re-disclosure license will deter patients from seeking treatment, and could lead to harm for those who decide to engage anyway.

“Some insurers have discriminated against substance use disorder patients, and substance use disorder patients have not gotten life insurance or other key insurance like that because they found out,” said Deborah Reid, senior health policy attorney with Legal Action Center, emphasizing the fact that discrimination against substance use disorder patients is not a thing of the past, but a very real problem her office deals with regularly. She argued that lessening privacy regulations for these patients is likely to increase the problem. Other examples of potential bad case scenarios resulting from the relaxed consent rules that she and her co-worker Jacqueline Setz provided were child custody cases, information spread through small town communities, and law enforcement gaining access to the records.

The new law includes anti-discrimination language, which proponents like Shatterproof say is a big win. “Certainly the illegal nature of using drugs should never be a barrier to someone accessing emergency help or medical care when they need it. That’s something we should hopefully all be working toward. This legislation is consistent with existing federal protections around the treatment of addiction,” said Kevin Roy, chief public policy officer at Shatterproof. Currently, the Americans with Disabilities Act (ADA) covers discrimination against substances use disorder patients — but only if they are not currently using illegal substances. If a patient is engaged with treatment but struggling to maintain total abstinence or does not seek total abstinence as a goal, they are not protected against discrimination by the ADA. But opponents say that the new anti-discrimination language won’t be enough to offset the dangers caused by allowing this sensitive information to move more freely. “It’s in there, you can’t discriminate, but if you do — who’s gonna be able to enforce that? With no patient first right of action, patients can’t stand up for themselves unless they have resources to retain counsel and sue in civil court,” said Talbott, adding, “even the parts that sound good, upon further reflection and digging, seem to be paper tigers.”

Although those who have been involved in the fight for years were disappointed that these changes were slipped through alongside the unrelated coronavirus stimulus bill, they say the fight isn’t totally over yet.

“We still have initial consent…it didn’t remove the complete foundation of Part 2, but it will be a different struggle now,” said Talbott, explaining some early-stage strategies NAMA-R and other groups are discussing in order to ensure addiction patients can still have robust privacy protections in the future.

Then, with a note of sadness, he added: “The 10 year battle to preserve privacy protections in Part 2 is over.”

“These are people’s lives we are talking about,” summarized Tarino. “There are very deep implications to people losing rights and privileges because of their participation in something that was supposed to help them.”

The spread of this coronavirus coincides with the greatest number of unsheltered residents living on the streets of San Francisco: about 8,000 adults, 71 percent of whom once had a permanent home in the city. Jacintho, the director of addiction medicine at HealthRight 360, a clinic that has provided comprehensive support to people experiencing homelessness for over 50 years, says health care practitioners who serve those experiencing homelessness are rushing to aid a population that has long been forgotten by the city.

Get Talk Poverty In Your Inbox

Physicians and other care providers say what’s notable about the city’s response in assisting the most vulnerable San Franciscans is that the strategies deployed during the emergency are exactly the tools city leaders had been dragging their feet on implementing, such as stopping police sweeps, working with hotels to set up housing, and making sure those experiencing homelessness have access to comprehensive preventative health care.

California’s Bay Area was one of the first regions in the country to institute a shelter-in-place order, which drew ire among advocates. At first, those experiencing homelessness were exempt from the order, and later were advised to “seek shelter.” How exactly were the tens of thousands of those suffering from homelessness supposed to follow the order? And, because sheltering in place is the centerpiece of the public health response to the pandemic, how do we provide everyone with the space and security to follow these recommendations?

These are exactly the kinds of questions that Margot Kushel, a physician at Zuckerberg San Francisco General Hospital and Trauma Center, the city’s safety net hospital, thinks about. “There is no medicine as powerful as housing,” she says. “Homelessness is completely incompatible with health.” Housing stability has manifold impacts on those experiencing homelessness, and studies have shown that nearly 90 percent of recipients of organization-supported rehousing or rental assistance are housed in permanent homes a year after their initial transition.

Kushel, who has advised on what model policies should look like to help people make the transition from living on the streets to secure housing, says city medical teams are now conducting direct outreach to those living in unstable housing, like tents. Based on age and other medical vulnerabilities, physicians help those living on the streets understand what their options are for locating temporary shelter. Given that shelter is the first priority of physicians and policy makers, the epidemic has exposed how closely tied housing and health are.

Shelters, which typically offer clients housing for a set number of months, have relaxed some of these requirements and the city is working to make 6,555 hotel rooms available. But it’s work that has to be conducted carefully; the city can’t force someone to live in a room that’s not in their neighborhood or is located away from their community. “That’s a huge thing for the homeless population,” Jacintho says, “the shuffling of them to shelters.” This temporary housing is also the first step in seeking permanent housing solutions, not an ultimate solution.

Educating those seeking aid has made some of the everyday care work more complex. In pre-COVID times, Jacintho says, he would sit face to face with a client to go over their needs, symptoms, progress, and concerns, but now he’s communicating with them via a computer or a phone. Telemedicine might be a natural shift for someone who uses devices every day, but for those experiencing homelessness, Jacintho says it’s “definitely a shift for [his clients] culturally.”

The outbreak has meant a downturn in those coming into clinics, for others. Chuck Cloinger, the chief medical officer at St. James Infirmary, an occupational and health safety clinic for sex workers in the Bay Area, says that their mostly-volunteer team has focused on street support in order to aid clients.

Cloinger and his team are focused on making sure that essential health services that may not appear to be directly related to coronavirus management don’t fall through the cracks. Though they’re no longer conducting health screenings in their mobile clinic, the St. James Infirmary van goes out once a week to facilitate needle exchange and deliver other essential goods like hot foods and groceries.

At first, the spread of COVID-19 among unhoused residents was slower than those with shelter, but as of April 13 at least 90 people at a shelter in the city have tested positive. Unsheltered San Franciscans are already medically vulnerable, and with coronavirus testing still lagging far behind the necessary levels, the true number of impacted unsheltered residents is unknown.

If anything, Kushel hopes the recognition of homelessness as a public health crisis in and of itself — and one that can be remedied or even eradicated through systemic change — is a matter of what she calls “political will.”  Even though San Francisco voters passed Measure C in 2018, which would tax large companies to fund services for those experiencing homelessness, the money is still tied up in court. With early action from the San Francisco Department of Public Health and coordination with hotels to mitigate coronavirus as a public health concern, advocates may be right to wonder when it is that living on the streets without shelter will be seen as an issue of public concern as well.

The San Francisco Homeless Outreach Team was unable to respond to a request for comment.

He still has to go every single day to get his medication, without which he would go into weeks of painful opioid withdrawal. My husband is one of hundreds of thousands of people across the country who rely on medications like methadone and buprenorphine to curb addiction to opioids and stay out of withdrawal, and who are now wondering whether they are going to continue to have access during the novel coronavirus pandemic, or risk being exposed to the virus by visiting facilities daily.

Get Talk Poverty In Your Inbox

The short answer is yes, facilities that prescribe and dispense these medications are continuing to run, and patients should not lose access to medications for opioid use disorder during this crisis. Methadone and buprenorphine are classified by the World Health Organization as essential medicines, which means continued access to them should be a priority. Various government agencies have issued guidelines and legal exceptions to a number of rules and regulations that usually limit access to these medications, in the hope of reducing visits to clinics.

But, of course, there’s a longer and far more complex answer as well.

Although methadone and buprenorphine treat the same disorder in relatively similar ways, they are governed by vastly different sets of rules and regulations. “On the [buprenorphine] side, the minimum you tend to see prescribed is a week. It would be easy in that case to give those patients a two-week prescription or call in an extra script with a refill. On the [methadone] side, that’s where it gets hairy,” said Zac Talbott, president of the National Alliance for Medication Assisted Recovery (NAMA-R), who also has direct experience as a patient and running facilities that provide these medicines.

Buprenorphine can be prescribed by any doctor or advanced practice registered nurse who has taken an eight-hour waiver course. That means patients can access it in a number of settings including primary care, psychiatry, gynecology, or addiction treatment facilities. Methadone, on the other hand, can only be dispensed for addiction treatment from a licensed opioid treatment provider (OTP), commonly referred to as a methadone clinic. It is governed by a complex web of rules, regulations, and policies that come from federal agencies, state authorities, and individual clinic directors. Since methadone is a better option for people with higher tolerances to opioids, and doesn’t require patients to go into withdrawal before starting it, it’s essential that both medicines are available.

“There’s going to be a broad variety in the way OTPs respond,” said Talbott. “Patients need to realize this could vary from state to state because of state authorities.”

Across the nation, State Opioid Treatment Authorities, who make state-level decisions about medications for opioid use disorder, have been looking to the federal Substance Abuse and Mental Health Services Administration (SAMHSA), for guidance on how they can respond to the novel coronavirus outbreak. This agency governs the rules around making medication available to be taken at home, instead of in a clinic (colloquially called “takehomes”), and many other methadone regulations at the federal level. Elinore F. McCance-Katz, the head of SAMHSA and the assistant secretary for mental health and substance use, told TalkPoverty by email that “SAMHSA/HHS are working in an ongoing manner with states and communities facing these issues. We have provided flexibilities to the states to help to assure that those on medications for opioid use disorders continue to get their medication. We have also been working to expand the ability to provide services by telehealth modalities wherever possible.”

Washington state, where the first confirmed cases of COVID-19 appeared in the United States, was the first state to receive the ability to dispense extended takehomes, lasting up to 14 days, to specified populations without first applying for individual permissions like providers must do normally.

“As of the 9th we have essentially put out seven different types of blanket takehome exception requests that programs can request per federal law to allow a large majority of individuals who are considered stable—and that’s determined at the discretion of each program medical director—to allow them to move beyond just daily or close to daily dosing,” said Jessica Blouse, of the Washington State Opioid Treatment Authority. “For buprenorphine there are no federal rules, so [those patients] can be moved to whatever level can be determined as safe.”

But that doesn’t mean all Washington patients will receive these benefits. Tanna, a patient who lives between the cities of Seattle and Tacoma, said she has not been offered any takehome doses. The reason, she was told, is because she has been with that provider just over three months, so she is still considered a new and therefore unstable patient—even though she transferred from another clinic where she had earned a month of takehomes.

She is also required to attend four hours of group therapy each month. Last week, her group had eight attendees and she did not notice any special precautions in place due to the virus.

“The only accommodation they’ve made [in the clinic] is at the dosing window there’s now hand sanitizer, the trash is moved a little bit, nurses wear gloves, and the [dosing] window screen is lowered,” she said.

On March 16, SAMHSA updated its guidelines specifying that all states with declared states of emergency could request blanket exceptions in order to provide stable patients with 28 days of takehome medication, and 14 days of takehome medication for patients considered less stable but still able to safely handle the extra medication. In states without a declared emergency status, each clinic is eligible to apply for similar exceptions for their patients.

The updated guidelines from SAMHSA allow states and providers greater flexibility to dispense takehome medication—but that does not mean that every clinic will utilize that flexibility to its fullest extent, nor that they will apply it to each patient.

“It may come down to the fact that patients will need to be given 14 day supplies,” said Mark Parrino, president of the American Association for the Treatment of Opioid Dependence. “However it should be case by case …We want to let people quarantine to clearly stop the spread of the disease, [but] remember we are dealing with opioids. Opioids in the hands of unstable patients can be dangerous. We don’t want to flood the community with a lot of methadone in the hands of unstable patients who may not be able to deal with the fact that suddenly they have a two-week supply.”

“People who are least likely to get takehomes are people who are new to treatment and people who have unstable housing, unstable psychosocial situations, people who might be continuing to use other substances, people with underlying health concerns; things that mean they have instability in their life. I would argue they are the people who should get takehomes immediately,” said Keith Brown, a harm reduction advocate currently working at the county level in Schenectady, New York on the COVID-19 response. “This is going to get into the argument about which is more dangerous, giving people takehomes they might sell or whatever—but in a public health crisis, people are going to have to make determinations about what makes sense. Having a few hundred people come into a clinic every day is a transmission nightmare.”

It’s impossible to know what every single state and clinic will do with their expanded discretion. Reports coming in from patients and providers indicate the response is as varied as opinions on addiction.

Justine Waldman, the medical director of REACH, a harm reduction-based buprenorphine clinic in Ithaca, New York, has begun offering one and two month scripts to her buprenorphine patients, giving longer scripts to those who have a harder time getting in to the office or who have a history of missing appointments. Her emphasis is on access and patient health over surveillance. The caveat, she stressed, is that this is an entirely new situation that is evolving each day.

“We might decide tomorrow that the way we’re doing it now isn’t working. We are really having to come together and take it day by day,” she said.

Jana Burson, who is the medical director of an OTP in North Carolina, said that while her clinic is not giving most patients extended takehomes, they are utilizing measures to help keep the facility sanitized, and to enforce social distancing while patients are in the building. For example, the lobby chairs have been spaced to be at least six feet apart, and some counselors with smaller offices are moving individual counseling sessions to larger rooms. They are aggressively disinfecting chairs, door handles, countertops, and other shared surfaces.

Vanessa, a patient in North Carolina, reported that her clinic was not dispensing any extra takehomes. She normally receives takehomes for Saturday, Sunday, and Monday, but was called in this Monday for a drug test and bottle check, a practice observed by some clinics in which they count patients’ takehome bottles. She described her clinic as “really business as usual” besides seeing staff taking patient temperatures. She noted that her temperature was not taken when she stopped by for the drug test. On Thursday morning she texted me an update that she was going to be given seven takehomes, but would have to pay for them out of pocket.

Stephanie, a patient in Pennsylvania, says she has continued to receive her regular six takehomes, but that group meetings and individual counseling sessions have been canceled until further notice. When she pressed for more information, her counselor replied that for the clinic to shut down “it would have to be the end of the world and there would be zombies,” but conceded that they were giving some extra takehomes to medically fragile patients.

Emily, who has hepatitis C, has not been offered any takehome doses by her Lexington, Ky., clinic, but reported that all patients are being stopped upon entering the building and questioned about potential symptoms. People who report feeling unwell are dosed from their cars, and only five patients are being allowed to enter the building at a time. Groups have been canceled, and individual counseling sessions are being done over the phone.

Samantha, a pregnant patient in Central Florida, reported that she was given 13 takehomes and had a doctor’s appointment canceled so she would not have to go in on an extra day.

In South Florida, my husband Ricardo still goes in for dosing every day, but told me his clinic was advising patients to be prepared to pay two weeks in advance should the need for two weeks of takehomes arise. For my husband, that means shelling out $224. For patients at other clinics, the price can vary in either direction, but not typically by much.

My husband’s experience highlights another concern facing patients on these medications. For some, extended scripts mean more money up front. Some methadone patients who pay out of pocket are only able to do so daily, relying on cash tips or weekly paychecks to pay for their medicine. Buprenorphine patients who are used to paying for one or two weeks at a time might not have additional funds for a month-long script. Patients whose medications are covered by grants or insurance sometimes have caps on the amount of doses that can be covered at one time, leaving them to pay out of pocket for extra doses. If they can’t pay, clinics are not required to dose them.

Because buprenorphine prescribing is not burdened with as many stringent regulations as methadone, it is easier for providers to adhere to social distancing recommendations while still keeping patients appropriately medicated. Many providers have reverted to telehealth. On March 17, the Secretary of Health and Human Services lifted restrictions on telemedicine practices that prevented Medicare patients from engaging by using cell phones in homes or shelters. On the same day, the Drug Enforcement Administration also waived requirements that patients starting on buprenorphine have an initial in-person visit, temporarily allowing new buprenorphine patients to engage via telemedicine from the start.

But even with these changes, economically disenfranchised patients may struggle to utilize telehealth options. “Not all of my patients have the right smartphones to do telehealth, or the minutes. When I asked them about doing telehealth, they said no way,” said Waldman.

Like Talbott stressed, the response to this crisis is going to vary between states and clinics, with wide discretion placed in the hands of prescribers and medical directors. It is a situation that is changing by the day, as states and counties continue to evaluate the impact of COVID-19 in their communities and how they wish to respond.

“I think my biggest duty right now is to reassure patients that they will not be abandoned,” said Burson.

Correction: An earlier version of this articles stated that all registered nurses were able to prescribe buprenorphine. Only advance practice registered nurses can prescribe that medication.

I developed a severe case which turned into bacterial pneumonia; although otherwise fit and healthy, I have asthma, which makes me especially susceptible to respiratory illnesses. I spent Valentine’s Day flat on my back, wheezing and struggling to breathe while the antibiotics worked their magic.

Say what you will about azithromycin; it sure does kill bacteria good.

Get Talk Poverty In Your Inbox

I work as a server, and I almost certainly contracted the flu from my workplace; prior to becoming sick, I served multiple customers who told me they were ill, which means exposure to their breath, used plates, napkins and cutlery, and surfaces they have touched. Moreover, several of my coworkers were ill with the same symptoms on the last shift I worked before becoming sick.

If you are worried about infection from COVID-19, you should be less concerned about hoarding masks and hand sanitizer (which you really shouldn’t be doing) and more concerned about the ways that poverty, a lack of access to health care, and general class inequality in North America could contribute to spreading it.

In Canada, where I live, servers are usually paid at or slightly below provincial minimum wage, and in the USA it’s often less than the already abysmal minimum wage. Most food service workers — servers, like myself, as well as cooks, bussers, and a vast variety of other folks working for an hourly wage — do not get paid sick days, which means taking time off even when you are pretty much dying costs you money.

Money you probably don’t have, which means you come into work sick.

For me, this was the first time in my 15-year career in the service industry that I have ever called in sick for multiple, back to back shifts. Tips are variable, but I estimate my three days off cost me about $350, plus $100 worth of medication. That doesn’t include the cost of my emergency room visit, which an uninsured American would also have to pay for.

I’m really lucky that I work with good people and have a kind boss, who helped me cover my shifts; in many restaurants, the culture is not so forgiving, and calling in sick with anything less than a brain aneurysm is a sign of weakness. You’ve “screwed everyone over” by not coming in and making someone else work a double or else work shorthanded. In many other restaurants  I’ve worked in, you may find yourself missing shifts you would usually work on the next schedule — a “punishment” for the selfish act of allowing a virus to infiltrate your body and replicate within your cells, you lazy prick.

The main reason I was able to take a couple sick days this time around — regardless of the fact that I had to, since I couldn’t actually get out of bed — was that I have another job where I’m self-employed. In short, I had some extra money and could afford to not go to work and sweat and sneeze and cough all over people, food, and objects.

Not only does this mean I didn’t infect other people — COVID-19, incidentally, is primarily spread through respiratory droplets in the air, and by person to person contact — but I recovered faster because I got the medical care and rest I needed, which means I returned to work more quickly. Better for me, better for my boss, better for the health of everyone.

By contrast, as I recently tweeted about, this isn’t the first time I’ve had pneumonia; in 2013, I had walking pneumonia for two weeks, during which I worked the majority of the time handling food in close proximity to customers. I didn’t do that because I’m a selfish jerk unaware or unconcerned about the health of others, I did so because I wouldn’t make my rent if I took time off and because I was working in a place where I was afraid of what would happen if I called in.

Not only was I sick much longer in that case — and therefore capable of infecting others for a longer period of time — it took me months to fully recover, which had further economic impacts for me. I would have been a better worker, infected fewer people, and been less of a strain on the health system had someone just given me a goddamn paid sick day; it would have been cheaper and better for literally everyone in my community.

In 2017, 130 people were sickened by an outbreak of norovirus — a highly contagious gastrointestinal illness — which was directly linked to Chipotle’s management policies around sick workers. It’s not just about the policy, though; even if workers had been “allowed” to call in sick and supported by management to do so, they’re going to come into work if missing that shift means no gas in their car, or their kid doesn’t get lunch tomorrow, or it’s ramen for dinner every single day for the next week.

When you economically punish people for getting sick, more people are going to get sick.

All signs point to COVID-19 being a genuine pandemic that we should all be concerned about and thinking about — which means we need to care not only for ourselves, but for others. If you care about your health, care about how the people around you live and are treated in their everyday lives.

Viruses don’t care how much money their host makes, but how much money their host makes, and how we treat working-class people when they get sick, may impact how many opportunities COVID-19 has to spread.

“What’s wrong?” my friend asked.

“I think I just chipped my tooth.”

My other friend waved her hand at me. “Just go to the dentist.”

It wasn’t an unreasonable suggestion, but I didn’t have medical insurance, let alone dental: a whopping 33.6 percent of US adults don’t have dental coverage.

Get Talk Poverty In Your Inbox

Not only did I not have dental insurance, but I hadn’t been to the dentist in more than a decade. My parents, who both had all their teeth pulled in their forties, had stopped taking me to the dentist when I was around ten. I assumed it was because of the cost. Even with dental insurance, most plans only cover one to two grand of dental work per year, with a deductible. This seems reasonable until you need something more than a cleaning, like a crown, which costs between $750 and $1200.

When I got back home, to the house that I lived in with six other people, I looked in the bathroom mirror and discovered a whole side of the tooth had come off, right down to the gum line. I didn’t want to get an infection, so I did a Google search for cheap dental care.

There was a college nearby with a teaching school, meaning that students worked on you while supervised. The only problem was that it required an initial interview and then a separate exam on a different day before they even started treatment. A car was a luxury that I couldn’t afford, and the trip to the dental school would take hours and multiple buses, not to mention unpaid time off of work.

The next best option was Superteeth, a dental clinic that advertised most basic dental services at $99. Fortunately, Superteeth was on a busy road easily accessible by one bus. A few days later, I headed to the clinic. It was hard to miss, as the outside of the building was covered with signs advertising cheap dentistry.

I walked in without an appointment and filled out some forms, crossing out the insurance section. After an hour, the dentist saw me and told me, without even doing an x-ray, that I needed a root canal.

“How much is that going to cost?”

“The procedure is between six and eight hundred dollars.”

Six hundred dollars was what I made in two weeks. I did not have that kind of money. Then she explained that it was just the cost of the root canal. I’d also need a crown, which would push the total past a thousand dollars and require multiple visits. I must have looked shocked, because she added that they could just pull the tooth for $99.

“Can I think about it and come back?” I asked.

“Sure, but don’t wait too long.”

For the next week, I smiled in front of mirrors and windows, trying to figure out if a missing tooth would be noticeable. The tooth was on my left side, third from the back. My biggest concern was how a missing tooth would affect my job prospects. In a list of common nonverbal mistakes made during job interviews, not smiling came in third, with 38 percent of hiring managers citing it as an issue. Smiling is hard when you’re self-conscious about your teeth. Sure, I could do a closed-mouth smile, but it doesn’t have the same effect on people.

In the end, I decided that I’d rather have a missing tooth that wasn’t too noticeable than a rotting tooth that could get infected and cause further, more expensive issues. Even if I could get my hands on a thousand dollars, I would have used it to pay down my credit card that was maxed out from college expenses instead.

When I got the courage to go back, the dentist asked for the $99 upfront. I wasn’t sure what to expect, since I’d never had a tooth pulled before. My friends all had their wisdom teeth pulled and they were all knocked out for the procedure. This was not the case for pulling other teeth.

The dentist shot up my gums to numb them. She then grabbed what seemed to me like regular pliers that you would find in a hardware store. I was awake as she clamped down on the tooth and used all her strength to yank it out.

I was expecting something more surgical and less brutal. I heard the tooth shatter and then the sounds of the dentist scraping the area.

“I think I got all the bone fragments out, but it’s hard to tell. You might have some bone fragments come through the gums in the next few weeks. You can just pull them out yourself or you can come back and we can do it.”

She didn’t mention if it would cost me or not to come back. I didn’t ask, because I knew I’d just go the DIY route. She told me not to drink from straws, as this could cause the blood clot to dislodge, and then sent me on my way without so much as a Tylenol.

I was planning to take the bus home but called my sister for a ride instead. I didn’t want to scare strangers with my bloody gauze and slack mouth. A day later, I was back at work, as I didn’t have vacation days and was now out $99.

I remembered the dentist telling me to “get back in for an exam soon.” She looked concerned. I was having pain in other teeth and was using copious amounts of Orajel to deal with it.

I landed a job with better pay and benefits a few months later. As soon as my dental insurance kicked in, I made an appointment. I had 16 cavities and had to get them filled four at a time over four sessions. As I’d just started work three months earlier, I still didn’t have the money to pay all the out-of-pocket costs and ended up putting some of the expenses on a high-interest credit card.

My dentist kept pushing me to get a dental implant. He warned me of gum loss that could disfigure my face. He also told me my teeth would shift to fill in the gap, causing my bite to change. He did a thorough job of scaring me, but I didn’t have the $2400 to cover the out-of-pocket costs.

A few years and a few raises later, I was able to get the dental implant. I had been experiencing TMJ jaw pain due to the shifting teeth that got so bad that I went to the dentist to make sure I didn’t have an infection.

Like getting the tooth pulled, I was awake for the whole implant procedure. The dentist drilled into my gums, placed a metal screw in the hole, and stitched my gums back up around it. It would be a couple of months before the gums were healed enough to place the fake tooth on top of the screw. Again, I was thankful that the tooth was in the back. A missing tooth was one thing, but a screw sticking out of the gums was quite another.

Years have gone by and the fake tooth still gives me issues. Because I waited too long, I lost a lot of gum tissue and the fake tooth doesn’t fill the space well. Food gets stuck underneath the tooth and when I run the floss all the way under, I sometimes cut the gums. This leads to bleeding, puffiness, and a few days of pain. Once, it led to an infection.

The implant troubles are a constant reminder of how lucky I was to find a job in time, before I — like my parents — lost all my natural teeth. Not everyone is as fortunate.

I have firsthand experience with one: Rhogam. Like 15 percent of the population, I lack the Rhesus factor in my blood, which means I have a negative blood type. If your partner has a positive blood type (or if their blood type is unknown), the fetus can inherit their factor, causing problems with the pregnancy. Pregnant people in this position can be given an injection of rho(D) immune globulin, such as Rhogam, to create antibodies that desensitize our physiological response if our blood comes into contact with the fetus’ blood, should it be Rhesus positive. Without the injection, it could be problematic for not only the health of the pregnant person and developing pregnancy, but the development of future pregnancies. Normally, Rhogam isn’t given during pregnancy until the 28th week, but abortion providers still routinely provide it at earlier gestations.

Get Talk Poverty In Your Inbox

I had the privilege of using insurance when I delivered my two children, including one through a cesarean section. Unexpected fees weren’t something I anticipated when I needed an abortion while living uninsured — and I live in Texas, where in 2017 a bill passed prohibiting insurance plans from providing coverage for abortion unless the pregnant person has a separate premium they’ve purchased specifically for abortion. And for most people, Medicaid won’t cover it, either. I learned I’d need to pay $100 because of my blood type, on top of $450 for a surgical abortion. My local abortion fund helped, but it wasn’t enough for me to afford Rhogam and sedation. So I experienced my surgical abortion completely aware, which wasn’t comfortable for me. Nor what I wanted, since medical settings give me anxiety.

Some clinics have taken measures to address the challenges of added fees. And abortion funds, such as the Mississippi Reproductive Freedom Fund, also provide financial assistance. Some abortion providers combine what would typically be additional costs with the price of the abortion, or try to be up front about these fees on their websites. But not everyone has access to the internet, or if they do, it isn’t always easy to find accurate information. Crisis pregnancy centers often use similar names to trick people, who may not realize they’re on a site that isn’t legitimate. So it isn’t unusual for us to learn — for the first time — that we have to pay hundreds of dollars upon visiting the clinic.

“We’ve had patients who choose our clinic specifically because we don’t charge for Rhogam,” one clinic told me. Other clinics may waive the fee for those who need help paying for it, when resources are available to do so. “We received a grant that allowed us to provide our patients with financial assistance for things, and at the time we decided to use it on Rhogam, so people wouldn’t have to miss their appointment over an unexpected thing,” another clinic said. “We recognize the hardship this creates for many people, especially when a lot of people have no idea what their blood type is to begin with.”

The extra cost of Rhogam increased the time one patient needed to pay back a loan they took out on their car in order to afford the procedure. “I had to travel to a different state because it was closer than the clinic where I lived. I had the money from a loan I took out already, but when I found out I’d need to pay $100 more because of my blood type — in addition to the barriers I was already facing — I realized I’d be stuck in this cycle of debt longer than I hoped for,” they said.

I also spoke with Desiree — whose name has been changed to protect her privacy. “I remember standing at the window and being told it would be an extra $100 because of my blood type. It had already taken me weeks to get the $400, and I needed an abortion a few days before rent was due. I had to step aside and really think about what this could mean for my living situation,” she said, since she’d already needed assistance from a local abortion fund.

Laurie Bertram Roberts, co-founder and executive director of the Mississippi Reproductive Freedom Fund, told TalkPoverty: “We hear from many callers that struggle more because of these extra costs. It’s already hard as it is to raise hundreds of dollars for the procedure, especially for our callers who are experiencing homelessness and other barriers related to accessing abortion.”

This issue also affects those who don’t have a negative blood type. “I wasn’t even Rh-negative, but the clinic I went to gives everyone Rhogam,” said another patient. She said the additional cost caused her to drive home on “fumes,” because she had to use her last $50 that was originally intended for gas after driving out of town for her abortion.

When it comes to the extra cost associated with Rhogam, fortunately, things are changing. In Contraception Journal, the National Abortion Federation (NAF) recognized last year that testing for the Rhesus factor in abortion care has become a barrier. They refer to Dutch guidelines, which say the injection is unnecessary for pregnancies less than eight weeks — and Sweden also recommends against the injection for early medical abortion.

NAF recently updated its recommendations regarding when Rhogam is required. They no longer recommend it for early abortions less than eight weeks, most of which are medical abortions and account for two thirds of the abortions performed in the U.S., according to the Guttmacher Institute. Now, people with a negative blood type — who find out about their pregnancy early on — may have the ability to forego Rhogam at NAF-member clinics. Some experts say it isn’t necessary for a first pregnancy at all.

Dr. Alice Mark, NAF’s Medical Director, told TalkPoverty: “We know giving the Rhogam injection at 28 weeks decreases the risk of sensitization, but what we don’t know is that any intervention before that has any impact on the outcomes…The studies [on sensitization] use methods that are outdated, and we were doing this intervention without knowing whether or not it benefited patients.” They drew heavily on data from Europe, where not providing Rhogam early in gestation has “no appreciable impact.”

Dr. Mark stressed that some clinics may want to follow American Congress of Obstetricians and Gynecologists (ACOG) recommendations to protect their patients, and that’s not wrong. “But because we’ve made this change, it’s been taken to ACOG to be discussed on their committees,” said Dr. Mark.

One clinic I spoke with told TalkPoverty that, “We’re going to follow the [NAF] recommendations, and we should be updating the guidelines in the next month. All of our physicians are really excited to follow these guidelines — there’s a lot of research on it. It’s an extra barrier for patients.” Patients are also growing more aware. “I didn’t need it because I’m less than eight weeks,” said one person I spoke with before her abortion.

This isn’t the fault of clinics. It is the result of the systemic issues related to extreme abortion restrictions. After all, paying for abortion could be a lot easier if there wasn’t a federal ban on public funding. Independent clinics perform the majority of abortions in the U.S., but they receive absolutely no support from our government. Use of state dollars for Medicaid reimbursements for abortions is highly restricted in Texas and a number of other states, so while some providers may combine these additional fees in the cost of the abortion, it’s inevitable not all would be able to in order to sustain the operation of the clinic. In eleven states, including Texas, most people can’t use their private health insurance for their abortion, either.

And with providers across the country facing closures due to medically unnecessary restrictions, accessing a clinic becomes less of a reality for many even without these additional costs. Next month, Missouri will give a final ruling in the case of the state’s only abortion provider shutting down. Six states currently have only one clinic, and Missouri could be the first with zero. In Texas, we have the most cities more than 100 miles away from an abortion clinic. For some of us, there is no choice: we’re forced to continue a pregnancy we don’t feel ready for.

Because even though we have a legal right to have an abortion, lawmakers continue to remind us that our right to choose means nothing if we can’t access it.

I lived with that smile for 16 years. My family constantly struggled to stay afloat, and even though my single mother worked a full-time job, she couldn’t always afford health care. We went to the doctor when we were sick, not for checkups. Sometimes important issues got pushed to the back burner to make room for the day-to-day necessities, and one of those issues was dental hygiene. The appearance of my teeth felt like a declaration of my family’s lack of wealth. There are photos of me smiling brightly throughout that time, though, because even though a sense of shame followed me, I tried not to allow myself to be defined by what I looked like.

Get Talk Poverty In Your Inbox

When I turned 17, my best friend’s mother started bringing me to and from the dentist’s office, a place that I hadn’t visited in almost a decade, though I don’t know how those trips came to fruition. The topic of health insurance was never brought up, and my friend’s mother never mentioned having to pay a cent. It was suddenly available to me, and I didn’t bother to ask any questions. All I knew was that I was being helped and I was so grateful. I didn’t realize just how much pain the years of neglect would cause me, though.

My mouth would fill up with blood at any opportunity, to the point where my dentist would whisper to his assistant that he wasn’t sure if he would be able to continue with that day’s work. Even a basic routine cleaning would cause my hands to shake, and soon the assistant would be packing my mouth with cotton balls in an attempt to soak up the blood. The assistant would change with every session, but the dentist and I developed a routine because he never changed. He was a kind man, always asking how my classes were and if I needed more procaine. I’d shake my head or make a noise to answer, and then he would stare back into my mouth while tears ran down the side of my face.

On the worst days, the room filled with the smell of my teeth being filed down to make room for silver caps. One evening, as I was coming home from the dentist, I coughed up blood onto a bus seat as it was pulling up to my stop. I confessed to the driver and quickly ran out the door. At home I would eat soft food, wincing when cold hit the caps, freezing them for a moment. They weren’t joking when they said beauty was pain, but “it will all be worth it,” I told myself, massaging my sore jaws.

When I listened to the voicemail from my dentist telling me my insurance was covering the cost of five porcelain veneers, I smiled to myself as I cried on the school bus. I replayed that message over and over, and the next time I climbed into the dentist’s chair, I did it with pride. It still hurt, don’t get me wrong, but when he handed me the mirror and I saw myself with my new teeth, I burst out in tears. The sounds of those children taunting me were gone; I was one of the lucky ones.

Then I grew up.

As I grew older, I fell into the same trap as my mother. Cleanings became few and far between because I was working two jobs and the dentist’s office closed too early. When I was 22, the veneer placed on my right tooth fell off in the middle of the night and I swallowed it in my sleep. That morning, I had to rush to the emergency dental clinic on my one day off. The location closest to me was a short bus ride away, and I managed to keep my mouth shut tight the entire ride there, nodding “yes” or “no” in response to questions that were thrown in my direction by the bus driver or other friendly riders.

The office receptionist told me the procedure would cost me around $2,000, and when I told them I didn’t have anywhere near that amount in my bank account, they told me to sign up for the credit card the practice offered and start a payment plan. I sat in the chair, filling out my personal information, and was approved for an even $1,000. I sobbed as I walked down to the bank, punching my PIN into the ATM to get some cash for my first payment. I got a new temporary crown, and while I knew it was important and I desperately needed it, I asked myself if the cost was worth it.

I still believe that it was. I knew that if I went backward, if I came anywhere close to having my former smile, I would be screwed. I hadn’t been able to get a job with my old grin because the boss would spend the whole interview watching my mouth move, but after my teeth were fixed, the job offers came closer and closer together. I hadn’t been able to date comfortably beforeand now, with the gift of new teeth, I was suddenly lucky and in love. These teeth had saved me from a life that I was too afraid to think about.

It has been almost five years since I last went to the dentist. Every morning I wake up and press the tip of my tongue along the backs of my front teeth, hoping I haven’t swallowed another one in the middle of the night. I brush my teeth, ignoring the way the toothpaste turns a brownish-red color, and head off to work, where I work close to 50 hours a week between two jobs. Because I can’t afford to leave one and work full-time at the other, I don’t have health insurance, much less dental insurance. My dental plan consists of aspirin and liquid numbing medicine. It runs me an average of $12 every couple of months. I didn’t even know the pain in my tooth could be connected to the pain in my ear until I googled it. (That’s another thing that people don’t tell you about being poor: Google and WebMD are part of your health care plan.)

Now when people stare directly at my teeth, they are noticing how white the front row is. They remark that my teeth are perfect and want to know my secrets: Is it a special toothpaste? Mouthwash? Did I just get lucky? I always joke and tell them that they better be perfect because they cost me a lot, physically and emotionally.

The dentist still scares me, and I don’t know when I will be able to schedule another visit. I hope that one day, I’ll scrape together the money to have my wisdom teeth taken out. Better yet, I hope that one day, I’ll be able to work one single full-time job, a job that will offer me benefits including dental. I hope that one day, I’ll be able to have my teeth cleaned every six months instead of once every decade.

It occasionally hits me that even after all this, I’m still one of the lucky ones. People still think that I’m beautiful, and that’s enough to get me through this life. All I can really do is keep smiling.

“The end result is a lot of people are going to suffer,” he said.

D.C.’s council recently gave preliminary approval to a plan that would close United Medical Center, known as UMC, in January 2023, while reducing the city’s financial contributions to the capital’s only public hospital in the intervening years. Hospital officials say they need some $40 million to keep operating in this fiscal year alone, but the city’s payments going forward would be capped at $15 million annually.

Get Talk Poverty In Your Inbox

The move — which will be up for a final vote on Tuesday — has activists and workers at the hospital concerned, for a whole host of reasons. It also fits into a wider recent trend of hospitals closing up shop in the neighborhoods that can least afford it.

UMC is currently the only hospital in Washington that is not in the city’s northwest quadrant — which is both its whitest and richest. The city is grappling with the effects of widespread gentrification and rapidly changing demographics. By one measure, it is the fastest gentrifying city in the country, and in the top four for most black residents displaced. The population UMC serves is majority black, the poorest in the city, and disproportionately composed of Medicaid and Medicare patients.

If the budget cap is implemented, UMC will have to cut back services before ultimately closing. Already, UMC has reduced services due to budget constraints and financial woes, including closing its cancer clinic; a notice that the hospital will lay off employees within the next 60 days was circulated recently. Meanwhile, a proposal to open a new private hospital in that part of the city is far from a done deal, meaning the current hospital has an explicit end date, but the plan for replacing it is only half-baked.

“There is a closing date in the legislation that is not tied to the opening of any other hospital and right now, the city is still only in negotiations with the new Ward 8 hospital provider, which seems to have many roadblocks. So we don’t know what a realistic timeline is to have a new hospital in that part of the city,” said Elizabeth Falcon, executive director of D.C. Jobs With Justice, which is fighting the budget cuts.

Cutting back at UMC will mean longer wait times for its patients, and according to Jean-Pierre, higher mortality rates for those who suffer from strokes, heart attacks, and gunshots, as they are the most vulnerable when delays occur.

“There’s a lot of delays now, but to even cut more is going to create a catastrophic event,” he said. “They’re paying taxes just like the folks in Georgetown, [the richest part of D.C.]. Why should they have the delay in health care when they face a stroke?” For some residents in the area, the next nearest hospital after UMC is a nearly nine-mile drive away, which can take more than an hour in rush hour traffic. And the hospitals closest to UMC already say they have more patients than they can handle.

“Too many of our debates in DC are win-lose or lose-lose. UMC is another example. The debate shouldn’t be: New hospital in Ward 8 or responsible patient care at old hospital in Ward 8. It needs to be both. Vulnerable lives are at risk,” tweeted D.C. council member Elissa Silverman.

But the closing of UMC is about more than just one hospital in one part of one city. It is also emblematic of larger trends in which hospitals are closing, consolidating, and moving out of low-income urban neighborhoods in favor of neighborhoods with richer residents.

In 2014, a Pittsburgh Post-Gazette/Milwaukee Journal Sentinel analysis found that the number of hospitals in major U.S. cities fell by nearly half between 1970 and 2010, and most of those that closed were public hospitals or hospitals located in low-income neighborhoods. Meanwhile, two-thirds of hospital openings during the same time period were in more affluent neighborhoods.

That tracks with D.C.’s experience. The city lost Providence Hospital, in its northeast quadrant, earlier this year, and now UMC has been put on life support, while its four other major hospitals are in wealthier or rapidly gentrifying parts of the northwest.

Not surprisingly, hospital closures lead to worse health outcomes, particularly for those who suffer from heart attacks or injuries that require immediate medical attention. Areas that lose hospitals also tend to lose other medical services as well, as doctors and other practitioners move away or decide to open new practices elsewhere. This turns low-income areas into health care deserts.

Plus, those same areas tend to be the least served by public transit, and have the most residents who don’t own their own modes of transportation, putting ever-higher barriers between patients and the care they need.

“Localities are getting out of the business of running hospitals. That doesn’t mean people are out of the business of getting sick in every neighborhood,” said Falcon. “We are at a moment in history where governments don’t like paying for government services.” Available data on hospital closures is not great, but between 1996 and 2002, per one study, at least 13 public hospitals closed; another study found that public hospitals that closed between 1990 and 2010 were in neighborhoods with significantly higher percentages of black residents than public hospitals that remained open.

On the private side, meanwhile, powerful, multi-facility health systems are responsible for much of the hospital consolidation cities have experienced. Between 2005 and 2017, there were 1,000 hospital merger and acquisition deals announced. 40 percent of hospital stays now occur in markets in which there is only one hospital owner. Such consolidation, in addition to making hospitals fewer and farther between, drives up prices and drives down management quality.

UMC has had its struggles, of course. A slew of errors led regulators to shut down its obstetrics ward in 2017. The only reason the city has been running the hospital at all is that its financial misadventures necessitated a 2010 rescue from bankruptcy. But few think that the city would let it collapse completely. Organizers are moderately confident that, if a new hospital is not completed in the neighborhood by January 2023, the council would at least continue to keep UMC’s emergency room open.

But none of that stops the slow bleeding already occurring there, or makes up for the preventable illnesses, injuries, and deaths that will happen in the intervening years due to the cap on funding; it says nothing good about the city that its poorest residents are saddled with its least-functional hospital. None of UMC’s problems change the fundamental fact that the bulk of D.C.’s available health care services are in the parts of the city where the residents are the wealthiest.

“We are trained to do no harm,” said Jean-Pierre, the UMC nurse. “But the D.C. council does not live by the same code of ethics. Based on the cutting, they’re doing a lot of harm.”

During a recent visit to her pain clinic, Stern’s pain management doctor informed her that her treatment plan was going to need to change again: Now, she would have to choose between taking Xanax and taking hydrocodone (also known as Vicodin). The doctor was not concerned that she was misusing her medications, but that law enforcement would come after him if “something happened to [her].” So, Stern had two options: medicate her pain, or get enough sleep. She chose the latter.

Get Talk Poverty In Your Inbox

While Stern’s story may seem extreme, her experience is representative of many chronic pain patients who have come up against various barriers that have been set by state governments, the medical field, and corporate pharmacies. According to recent CDC findings, 50 million Americans have chronic pain; although chronic pain affects people from all economic backgrounds, it tends to hit those in poverty the hardest. People in chronic pain tend to experience greater poverty, and struggle with the cost of medications and frequent pharmacy or doctor’s visits. The treatment of chronic pain also has major disparities when it comes to race, and black women in particular have suffered the consequences of those disparities.

Many of these access issues stem from a response to the opioid addiction and overdose crisis, declared a public health emergency by the Department of Health and Human Services in 2017. However, early response efforts have increased chronic pain and its consequences, leading to worse outcomes for chronic pain patients that should be addressed as a new public health crisis.

This crisis accelerated when the Centers for Disease Control (CDC) released their set of guidelines on opioid prescribing, intended for use by primary care providers, in 2016. The CDC has since clarified that the guidelines were recommendations, not strict policy, but the harm to many chronic pain patients like Stern has been done.

“The only treatment available [for my condition] at this point is treating the pain and the chief of urology at OHSU instructed my primary care doctor to allow me to have a monthly supply of opioid pain medication,” Stern said, but the results of opioid scaremongering have left her in agonizing pain instead. Part of the CDC’s 2016 guidelines, under the heading “Assessing Risk and Addressing Harms of Opioid Use,” stated that “[c]linicians should avoid prescribing opioid pain medication and benzodiazepines concurrently.” For someone with complex medical issues like Stern, this guideline is not useful.

Some government agencies are starting to recognize the consequences of cracking down on pain patients’ opioid prescriptions; the Food and Drug Administration (FDA) recently released a safety alert on the negative effects of sudden discontinuation or abrupt tapering of opioids, which can include “serious withdrawal symptoms, uncontrolled pain, psychological distress, and suicide.”  The authors of the 2016 CDC guidelines for opioid prescribing also recently clarified how its guidelines are meant to be used as a response to widespread misapplication of those guidelines.

The misconception that opioid prescriptions lead to opiate addiction has been widespread, and overarching state and federal measures to combat the opioid overdose crisis are reaching a fever pitch. There’s the Oregon Health Authority’s (OHA) now-tabled proposal to force-taper all Medicaid patients on opioids for certain chronic pain conditions; Senators Kirsten Gillibrand and Cory Gardner’s controversial proposal to limit all acute pain medication prescriptions to a seven day fill, which sparked massive pushback from the chronic pain and disability communities; and Ohio Senator Rob Portman, who favors a three-day fill limit. In contrast, the American Medical Association (AMA) has come out against arbitrary pill limits, as has a group called Health Professionals for Patients in Pain (HP3).

Very few opioid addictions begin with a patient who has a doctor’s prescription: Up to 80 percent of people with an opioid addiction illegally obtained pills from another source like a friend or relative first. While the opioid overdose epidemic from illegal heroin and fentanyl is a serious problem, federal and state actions to decrease the number of opioid prescriptions and/or pills in circulation overall will have — and are already having — a hugely negative impact on chronic pain patients who take opioid medications. While the number of pain prescriptions has declined since 2010, the number of deaths due to overdoses involving heroin and synthetic fentanyl has increased.

According to Thomas Kline, MD, a physician in North Carolina who maintains a list of chronic pain patients who committed suicide after being forced off of their medications, the anti-opioid hysteria that has taken root in the medical field and the federal government has resulted in “people [being] killed.”

Senators and state representatives are not medical doctors, and overarching government intervention of the kind that we are witnessing in private medical treatment can and does have consequences that are bad for chronic pain patients.

A one-size-fits-all policy, whether at the state or federal level, when it comes to chronic pain and opioids may have unintended consequences for chronic pain patients. Dr. Kline puts it more starkly: “Limiting the number of pills [that patients can get] is not going to work. All it’s going to do is screw people.”

The only thing that made paying them realistic, she said, was that she received a $4,200 tax refund this year.

“I would have put off my medical payments [without the refund],” she told me via email. “Between rent and day to day expenses, I don’t have the income to pay both. … Even with insurance the numbers seemed insurmountable until I got my refund. If it wasn’t for that I would have had to reapply for payment plans with the risk of being sent to collections.”

Get Talk Poverty In Your Inbox

Tax returns were officially due this week, which means that the roughly 80 percent of filers who receive refunds will soon have their money, if they don’t have it already. The average tax refund so far this year is $2,995, which is roughly in line with last year. For the average family that receives a refund, the amount is equal to nearly six weeks’ income. And a big proportion of the money Americans receive during refund season, like Megan’s, goes to pay for health care.

According to a report from the JP Morgan Chase and Co. Institute, families who receive a tax refund increase their out of pocket health care spending by 60 percent the following week. Spending on health care remains higher than normal for 75 days post-refund.

“The cash infusion represented by a tax refund payment allowed more people to make more purchases of healthcare goods and services, but, even more consequentially, it facilitated larger payments,” the report said. “This implies that the cash infusion generated by a tax refund payment triggered additional spending on large healthcare ticket items that consumers could have least afforded out of their pre-refund cash flow.”

“100 percent of ours is going to pay for prenatal care and the birth of our second child, due in June,” said Molly, who received a refund of around $2,000 for her family’s state and local taxes. “Our first child’s 2017 birth was uncomplicated and routine, and while I don’t remember what we paid out of pocket versus what insurance covered, the birth, the epidural anesthesiologist, the recovery, and a one-day stay in pediatrics (due to jaundice, probably the most common newborn treatment there is) was a little over $20,000. So we’re counting on the 2019 refunds going to paying off this birth as well, as we will easily hit our deductible.”

62 percent of the additional health care spending triggered by refunds went to in-person payments to health care service providers. That indicates that the higher spending isn’t limited to paying bills for past services, but that tax refunds actually led families to seek care that they had put off until they received a cash infusion. Dentists receive a disproportionate share of the additional spending: One in four adults with incomes below the poverty line skip needed dental work because of costs, and dental-related issues are responsible for about $1 billion per year in emergency room spending.

That so many Americans need a refund windfall in order to access medical care, sadly, makes sense. About one in four adults – 65 million people – reported skipping a medical treatment due to costs in the last 12 months, according to a recent West Health-Gallup survey. Last year, Americans borrowed a collective $88 billion for medical treatments, which doesn’t include the totals from the now ubiquitous medical crowdfunding campaigns that have proliferated on social media.

So tax season injects cash for those households to get the care they either would have had to delay or go into debt to obtain.

It’s worth noting that receiving a big refund means a taxpayer overpaid her taxes during the year, whether via automatic withholdings from paychecks or by paying quarterly estimated taxes (which is a requirement for the self-employed and independent contractors), thus giving the government an interest-free loan. A refund is just that overpaid amount being paid back.

However, the public doesn’t really view it that way: According to a recent New York Times poll, 77 percent of people would prefer to overpay and receive a refund come tax time, which makes sense. 40 percent of people don’t have $400 to cover an emergency cost, and the average savings amongst the poorest 20 percent of households is zero dollars, so an unexpected tax payment can deal a real blow.

But people also use their refund as a way to enforce savings: Paying their money to the government and then getting it back means they can’t spend it in the interim. Recent reports have shown that the Trump administration, in an attempt to inject money from its 2017 tax bill into the economy sooner, decreased withholdings so that people had less taken out of each paycheck for taxes throughout the year, meaning they were less likely to overpay their taxes and require a refund. But that ploy has backfired spectacularly. Many taxpayers were reportedly upset at getting smaller refunds than they expected come Tax Day, even if their overall bill was in many instances lower than the year before.

“We actually aren’t those types who try to have a big refund each year. We’d rather not allow the government to keep an interest-free loan all year. My husband has tweaked his withholdings so we do get more in the paycheck each week because we need it for all the copays, gas, etc,” said Lindsey Cox of Thomasville, North Carolina. Both she and her husband carry a gene for a rare disease called Van Maldergem Syndrome, which two of her three children have, while the third has severe nervous system issues. Their health care bills total hundreds of thousands of dollars annually. This year, their tax refund of $2,940 went to an array of household needs.

“Our tax return went to catch up on the house payment, electric bill, other small miscellaneous bills, and some car maintenance we had been putting off, like inspections, tire rotations, oil changes, etc.,” Cox said. “We’ve become experts at gaming our system and know for instance, we can be 60 days behind on electric before we face it being cut off. We’ve learned very well how to rob Peter to pay Paul and stay afloat in the process.”

That so many Americans need a quick injection of money in order to see a doctor or access other necessities is a problem that can be addressed by policy: Think universal health care, or the proposals to both expand the pool of those eligible for the Earned Income Tax Credit and allow low-income households to receive some of their refund early. As Bryce Covert explained, “as powerful as the EITC is, there are plenty of people who receive barely any money from it or miss out entirely.”

Tax Day should be a celebration of America’s commitment to civic responsibility and collective welfare, not a grim reminder that far too many people can’t access things that should be basic human rights. However, for too many, a tax refund isn’t just the difference between staying afloat and not, but between seeing a doctor and not, which can literally be the difference between life and death.

Editor’s note: When requested, last names have been withheld to allow people to talk freely about their finances.

My doctor, recalling my poor insurance, asked, “Do you ever get to the other side of the state?” I looked at her quizzically. “Because there’s an imaging service over there that offers ultrasounds for …” She paused and searched her computer. “Let’s see … $137, maybe closer to $300 if they think you need both abdominal and transvaginal. But it’s like a two-hour drive.”

My eyes bulged out of my head. I was billed more than $1,000 for the last ultrasound I’d had at my local hospital years earlier.

“I’ll drive,” I said.

I was relieved that my doctor told me about the discounted service. If I’d had to pay $1,000 or more out of pocket then I would have put off the procedure, like so many Americans do (and that’s if I ever got it at all). I had no idea that health care service costs could vary so wildly.

Get Talk Poverty In Your Inbox

Not only do prices vary from place to place, but the amount a patient will pay for the same service within the same hospital can vary depending on whether a patient has health insurance and what health insurance plan a patient has. When I called my local hospital to compare their prices for the ultrasound, I was told that it would cost around $700 with my insurance. If I were uninsured, that price would go up to almost $1,200. Meanwhile, that $137 option was a two-hour drive away — I just had to know where to look.

People looking for a car are told to shop around, maybe get a used car, or borrow one from a friend. Too often that same ethos is pushed into the health care space, with patients told to look around for the best deal or negotiate prices with providers. But price shopping for health care services is not as straight-forward as price shopping for a vehicle, despite legislative attempts to solve the problem.

At the beginning of the year, a new rule went into effect that requires hospitals to post their list prices online. But, as Kaiser Health News points out, that kind of transparency won’t have much of an impact because patients can’t understand those prices. The lists are full of incomprehensible abbreviations, list services separately that would always be bundled together, and vary depending on a person’s specific health plan, so consumers cannot get the type of information they need for comparison shopping. Moreover, these are just the list prices charged by hospitals; they do not include the price of physicians’ services during the hospital stay.

Not everyone has a doctor like mine, who actively looked out for my financial interests. And many times, even when people do try to calculate costs ahead of time, the tools they’re given turn out to be wildly inaccurate. One person profiled by the Philadelphia Inquirer, who proactively used her insurer’s price estimator tool to calculate the out-of-pocket cost of a breast MRI, was shocked when she was billed more than twice what the tool had suggested would be the upper-end range of out-of-pocket costs for the procedure.

Plus, finding the cheapest care is just the first hurdle.

My ability to access more affordable diagnostic services depended on a lot of things aligning — I had to have flexibility in my schedule to drive to a discounted imaging service provider, and I needed a vehicle that could make the trip. When all of those things did happen, I still had to shuffle work deadlines, time the appointment so that the drive there and back didn’t conflict with my kids’ school drop-off, and arrange for after-school care for them.

That same flexibility simply isn’t possible for everyone. Nearly 1 in 5 workers experience unstable work hours, which makes it impossible to schedule time to head to a different health provider in order to take advantage of cheaper care. Also, around 9 percent of Americans don’t own a car, and in recent years the number of people obtaining driver’s licenses has been trending downward. In rural areas, the nearest health care provider could be hours away. Though I live in an urban area, the nearest discounted service provider was a two-hour drive.

In an emergency, no one has time to inquire about costs. And even in less urgent situations, there is often no way to accurately determine prices. While hospitals are now required to post their price lists online, health care isn’t Amazon, where items are easily searched for, compared, and where prices are fixed. And high-deductible insurance plans are increasing in number, including in employer-sponsored plans, as insurers attempt to cost-shift onto consumers. That means more people are going to be in the same place I was over time.

On my drive to the other side of the state, I considered how fortunate I was to be able to access discounted health services. But being a self-employed person with a vehicle should not provide me with more options than someone with a less flexible work schedule or who doesn’t have a car. No one should have to waste precious time searching aimlessly for the best deal for treatment, and no one should have to go without because they didn’t know it was more affordable elsewhere or because the more affordable location was not accessible.

Until the U.S. chooses to recognize health care as a human right, rather than a commodity or entitlement, the poorest Americans will continue to suffer.

The rule proposed by the United States Citizenship and Immigration Services would require most immigrants seeking green cards to show that they have a middle-class income: specifically, more than 250 percent of the federal poverty line (about $62,750 for a family of four). Immigrants could also fail the test if they have received government benefits, including Medicaid and Medicare Part D, in the past or if officials feel they are likely to receive them at any point in the future. The test would also penalize use of the Supplemental Nutrition Assistance Program (SNAP, formerly known as food stamps) and housing assistance programs.

Researchers at the consulting firm Manatt found the proposed changes could drive disenrollment from Medicaid, even for people who are lawfully in the United States, eligible for coverage, and wouldn’t be subject to the public charge rule, because they fear running afoul of the new requirements. Similar fears are already pushing eligible immigrant families off SNAP, especially those in “mixed status” households that include lawful residents, citizens, and/or undocumented people.

Get Talk Poverty In Your Inbox

Overall, the researchers estimate public charge could affect 13.2 million immigrants on Medicaid, including 7.6 million children, who consume nearly $70 billion in Medicaid and Children’s Health Insurance Program services annually.

When people begin to unenroll from Medicaid, the rise in uninsured people who still need health care will lead to fewer Medicaid reimbursements and a corresponding increase in uncompensated care costs. That will be particularly hard on rural hospitals, in part because rural communities rely more heavily on Medicaid coverage than their urban counterparts due to the lower number of other insurance options and high poverty rates.

While the majority of immigrants in the United States live in urban areas, they are making up an increasing share of rural communities. When rural hospitals experience even a relatively small drop in income from losing these patients, Manatt researcher April Grady notes that it “can have an outsized impact.”

Texas, California, and Nevada could see particularly acute chilling effects for their immigrant residents in both urban and rural areas if the public charge rule is approved, thanks to their large immigrant communities. Texas is already struggling with hospital closures, where changes to Medicaid policy, along with the state’s refusal to expand the program, have hit rural facilities hard.

Sharita Thomas, a research associate with the North Carolina Rural Health Research Program (NCRHRP), observed that there have been 90 rural hospital closures since 2010, many in the South, with more on the horizon. 68 percent of rural hospitals vulnerable to full closure are Critical Access Hospitals, which are facilities that are at least 35 miles away from other hospitals, maintain 24/7 emergency care, and meet several other criteria to receive unique benefits designed to make them more financially stable, including cost-based Medicare and in some cases Medicaid reimbursement.

When the sole hospital in a rural community closes, it forces patients to search further afield for care, a particular concern with obstetrical and emergency treatment. It also has a wider negative economic impact. “In rural communities,” said George Pink, Deputy Director of the NCRHRP, “the hospital is the largest or second-largest employer in the region. When that source of employment goes away, there are often ripple effects.” This can extend to companies considering relocation but reluctant to do business in an area that lacks a hospital or doesn’t provide sufficient hospital services, depriving rural regions of economic opportunities.

Even if hospitals facing budget constraints don’t close, they could start cutting programs, with labor and delivery a frequent early target. When cuts fail to achieve the desired goal and get more drastic, a floundering hospital may ponder a merger with another health care entity. Hospital mergers in urban and rural areas alike are rapidly accelerating, with 102 in 2016 alone and a comparable number in 2017. Many of the hospital chains gobbling up smaller competitors are Christian, with the Catholic hospital system in particular expanding rapidly and cutting off access to reproductive health services in the process.

Public charge could have another unintended consequence on rural hospitals, where physicians from immigrant backgrounds make up an important component of health care access. Many rural communities are counting on immigrants to meet health care provider shortages, offering incentives to those willing to work in underserved communities. Physicians have already warned that the executive order restricting entry from majority-Muslim countries is detrimental to health care access in the U.S. and this rule could be another deterrent.

Determining the impact of public charge on rural hospitals “really is a bit of a numbers game,” said Grady, but it’s a game that the federal government has been unwilling to play. She added that while the proposed rule hints at issues like people being afraid to seek emergency care and mixed-status households withdrawing from benefits, it declined to provide estimated fiscal and social impacts.

“There’s administration hurdles that are not fully explored in the proposed rule,” she said.

Tara is running a campaign  on the popular crowdfunding site GoFundMe. She has fibromyalgia and a host of complications, and needs to relocate to access health care. She started fundraising in March 2017, and a year and a half later, she’s raised less than a quarter of what she needs. She’s not alone. Medical expenses are already the leading crowdfunding cause and donations can’t keep up with demand; a 2017 study showed that 90 percent of medical crowdfunding campaigns failed to reach their goals.

Get TalkPoverty In Your Inbox

The use of crowdfunding to pay not just for medical care but adjacent costs, such as lost work associated with being ill, caregiving costs for ill family members, utilities, travel and lodging costs to access care, and other externalities, is growing common. For low-income people who are under and uninsured, these cost burdens can be particularly high.

Faced with urgent financial needs, some may turn to payday lenders and other high-interest, high-risk “alternative financial services.” An increasing number are looking to crowdfunding, but Lauren S. Berliner and Nora Kenworthy at the University of Washington Bothell, authors of the 2017 study finding that these campaigns often fall short, discovered success can hinge on things like socioeconomic networks, media literacy, and the ability to translate needs into a compelling and understandable narrative. Campaign success can also be contingent on the nature of the ask; asking for help with ongoing caregiving costs, for example, is less straightforward than requesting assistance with the costs of a specific medical procedure.

Perusing crowdfunding sites reveals ample glossy, well-prepared pleas for help that are netting healthy proceeds, like “Join Oscar’s Village,” featuring a baby with acute flaccid myelitis, a brief, emotive story, and pictures of a happy family. Other campaigns have few to no donations and haven’t been optimized for an audience, like Tara’s: rambling, poorly-punctuated pleas for help, lengthy and apologetic stories, and blurry photos that don’t catch the eye of visitors. It’s a brave new world of health care financing in which those with socioeconomic privilege are better positioned for success than others.

Berliner and Kenworthy fear crowdfunding may be exacerbating socioeconomic inequalities. “Crowdfunding normalizes a means of health care financing that runs counter to a more rights-based system of values,” says Berliner. “

” Their work finds that crowdfunding promotes “hyper-individualized accounts of suffering” — the kind of tearjerker personal stories that get picked up in the media, like the widow of a shooting victim who needed help with his lung disease or the woman who saved her husband’s life with CPR while 39 weeks pregnant — that depend on individual ability to leverage media platforms. Crowdfunding sites themselves are also pulled into this debate as they become “an arbiter for public problems,” they say, developing the algorithms that can determine success or failure, verifying high-profile campaigns, and making decisions about what gets highlighted.

With crowdfunding occupying a growing role in the health care landscape, it should be noted that campaigners may also not be aware of the financial implications of participation, including tax liabilities or jeopardizing eligibility for need-based programs like Medicaid. Those most in need of advice on these issues may be least able to access it, lacking attorneys and accountants in their friend networks and unaware that they may need to consult a professional for advice.

The rise of medical crowdfunding demonstrates that insured and uninsured alike are struggling with health care expenses, especially among low-income people. In states without Medicaid expansion, medical debt is particularly high. Medical debt may be ubiquitous, but the amount of debt is often surprisingly small. A 2018 Health Affairs study discovered over half of medical bills sent to collections were under $600. Still, that’s much more than most Americans can pay. In 2017, the Federal Reserve found that 40 percent of people would struggle with an unexpected expense of $400 or more.

Far from being a grassroots solution to disparities in health care access, crowdfunding may just be making the problem worse by foregrounding personal responsibility over institutional accountability. It’s an extension of the argument we saw during the Affordable Care Act fight, put succinctly by Republican Representative Steve King when he said “I think a national health care act substitutes for a lack of personal responsibility.” The belief that the ACA was a handout rather than a hand up is ubiquitous among Congressional Republicans, who enjoy a comprehensive and very affordable health care plan as part of their jobs.

But more and more, we’re seeing voters disagree. Health care affordability was certainly on the minds of voters last week as they turned out to vote for Medicaid expansion in three states, Democratic governors who can drive Medicaid expansion like Laura Kelly in Kansas, and members of Congress who made health care part of their platform.

Stabilizing the Affordable Care Act and moving to protect Medicaid and Medicare may help bring some direct health care costs under control for currently vulnerable groups. This includes those in states currently without Medicaid expansions and moderate-income people who don’t qualify for subsidies or have high-deductible employer-sponsored insurance.

In the meantime, those facing high health care costs and associated expenses will have to keep turning to the internet for help. “I’m white knuckling it to California in a thyroid storm and was just told I need a biopsy now! It may be a long journey, if I have a surge it’s a hospital or hotel! Please pray and god bless you all!,” says Tara in her last update, featuring a photo of her in a hospital bed. It was posted 18 months ago.

Across the United States, people are mandated to take drug tests for a variety of reasons, ranging from employment, to drug treatment, to probation. While employers and insurance companies typically cover these fees, court-ordered tests are often at the expense of the individual. The costs vary widely, and can result in hundreds of dollars of fees depending on type and location. For urine and saliva tests, costs run $25 to $80—though one facility in West Palm Beach, Florida is reported to charge as much as $2,300 for a urinalysis. Hair tests range from about $100 to $150 each. Regular breathalyzer tests are usually only a few dollars, but ignition interlock devices—the breathalyzer tests some people are required to install in their cars after getting a DUI—range from about $50 to $100 per month. As for how often individuals have to pay, it is entirely up to the courts. Most people are tested once or twice a week—or even just a few times a month, depending on the severity of the offense—but as Keck discovered, that number can go up drastically.

Get TalkPoverty In Your Inbox

As part of her probation sentence, Keck was required to attend a Mothers Against Drunk Driving seminar but was given no formal treatment for alcoholism. The most demanding mandate was, by far, her drug tests. As she put it, “Basically all I had to do for a solid year was drug testing … There was no follow-up. They didn’t care if I was actually getting clean.”

Average urine tests can’t detect alcohol, so Keck was instructed to take an ethyl glucuronide urine test. Today these tests generally cost around $25 a piece, with some testing centers charging $75 to $100, but Keck was lucky—she only had to pay around $12 to $15 per test in 2012. It was the frequency of the tests that hit her pocketbook the most. Working as a waitress while also paying for living expenses, textbooks, and other school-related costs, Keck says she got by, but just barely.

Like many college students, Keck liked to drink with her friends. She says she was able to recognize that she was a problem drinker, but without any evidence-based treatment offered as part of her probation, she didn’t have much motivation or help discontinuing use. Instead of actually ceasing her drinking, she researched ways to get around the test. She discovered that if she drank about 10 cups of water before providing the sample, she could dilute her urine to the point that alcohol metabolites would be undetectable.

“I kept getting false negatives because I kept having diluted pee,” Keck admits. “Because of the false negatives I started having to go three to four times a week.” By the end of her probation she was required to test six days a week, costing her close to $100 weekly in drug testing fees alone. That doesn’t account for transportation costs or other probation fees, like the cost of classes and a mandatory donation to Mothers Against Drunk Driving.

Some might say it was Keck’s own fault that she had to test so much. After all, if she simply quit drinking, she could have passed without raising suspicions. But addiction is defined by the inability to stop despite negative consequences. It makes sense that someone faced with a penalty but no treatment would have difficulty discontinuing use.

“I’m not drinking and driving,” she says. “I don’t want to deal with that anymore. So at least that aspect worked out, I guess.” Nevertheless, she admits to nursing a hangover during the interview. Maybe there’s one less drunk driver on the streets—certainly a good thing—but it seems Keck’s money could have been better spent in a treatment program that provides real help for her problem drinking.

It’s not just people who “cheat the system” who are paying exorbitant costs. Kenny Ernst was placed on probation in Palm Beach County, Florida for one year in 2016 on a petty theft charge. He traded five years in prison and a felony larceny charge for the year of probation, which is a common trade-off among people who accept plea deals instead of going to trial. But unlike prison, probation shifts the financial burden of the sentence from the government to the probationer—and drug testing fees are no small part of that burden.

There are currently 3.7 million people on probation in the United States and 840,000 on parole. Arrest rates are already considerably higher for people of color and low-income individuals, especially for drug-related offenses. Because probation is often offered as part of a plea bargain, low-income offenders who can’t afford private lawyers or trial costs are more likely to become caught up in this financially demanding system.

Ernst, who studied photojournalism in college before becoming addicted to heroin, says he was stealing to fuel his addiction, which was in full swing when he was arrested. Opioid addiction is notoriously difficult to kick; in Ernst’s case this was one of many relapses during his long struggle for sobriety. Unlike Keck, Ernst entered a recovery program and managed to kick his habit in order to genuinely pass his drug tests. Unfortunately, the probation fees prevented him from enjoying the financial benefits that should accompany the cessation of an expensive drug habit.

“I paid 50 dollars a visit [to my probation officer],” he says, “and 25 whenever I had to be drug tested.” Probation drug tests are random, so Ernst essentially had to be ready with $75 at all times, just in case. He says he had to take up to three tests per month, in addition to regular probation visits.

In response to the question of whether probation helped his recovery, Ernst said “absolutely not.” “If anything, it made you want to use more. Imagine the pressure. Bills are hard enough to cover, then I have to go in and pay for a drug test.” He describes days when he would have $100 set aside for groceries, until he got the call that he needed to come in for a test. Suddenly that $100 was reduced to $25.

If someone doesn’t have the money for the drug test, probation officers get to decide whether or not to “violate” someone, which could lead to incarceration. The single time Ernst didn’t have the money for his test, his probation officer let him off the hook until he was able to borrow the $25. But that was a choice; if his probation officer had been in a bad mood or simply didn’t like him, Ernst could have been sent to jail or prison.

It’s supposed to be illegal to incarcerate people for being unable to pay debts, but court-ordered fees like probation and drug testing open the doors for exactly that. Human Rights Watch has published several reports following the stories of low-income people involved in probation who have experienced consequences like homelessness and imprisonment due to the cost demands of these programs.

Ernst and Keck were relatively lucky. Their finances were consumed by drug testing and other related fees, but they were able to pay. What about those who aren’t? Some judges will waive fees when clients can prove they are indigent, but again, that’s the judge’s choice. For many who are caught up in a substance use disorder, the difference between freedom and incarceration is little more than dollars and chance.

Today, Colburn works on her brother’s farm and is covered by Medicaid. As a manual laborer, Colburn has developed nerve damage, which flares up in her hands and wrists with overuse. “I cut back my hours to deal with it. I can’t afford to not be able to use my hands,” she says. “That’s how I make all of my money.”

Get TalkPoverty In Your Inbox

As a child who grew up in a farming community, Colburn says she observed that pain is just a part of being a farmer. “It’s taken for granted that your body hurts every day, that your back always hurts.” That’s true for workers employed in some of the most dangerous jobs: Many manual laborers with high rates of injury and repetitive stress injuries are also more likely to be uninsured. In fact, a 2015 study found that 65 percent of commercial farmers identified health insurance costs as the most serious threat to their farms.

Alana Knudson, co-director of the Walsh Center for Rural Health at NORC at the University of Chicago, prefers to discuss rural health care in terms of strengths, but she does recognize the real barriers demonstrated by statistics. “Overall, we know that people who live in rural communities are likely to have lower incomes than their urban counterparts,” she says. Rural residents are also more likely to have multiple chronic conditions and lower educational attainment, and they’re more likely to face barriers in accessing transportation to medical care.

But there are also less tangible barriers. Colburn says that many people she knows don’t feel comfortable navigating the complicated web of professional medical interventions when experiencing health issues. And the Medicaid system can often lack efficiency. Colburn says her state’s website often doesn’t work, and she still hasn’t figured out how to find a primary care doctor who takes her insurance. Once, a computer glitch resulted in her being removed from her insurance plan, and she was charged hundreds of dollars in out-of-pocket expenses. Even though it was an error on Medicaid’s part, Colburn was still responsible for the bill. “Generally when we’re talking about rural health care issues, we’re talking about access, as if once you get access that actually means something. But when you get access, it still can be a nightmare,” she says.

Faced with whether to seek medical attention or “make do,” Colburn says many people simply don’t go. She notes that farmers especially have a hard time leaving their farm obligations to take care of themselves. They also spend significant time outdoors, and it’s difficult to imagine a hospital stay. Colburn says, “I have treated myself or not gone a million times.” One spring, she stepped on a potato fork and punctured her foot. Instead of going to the doctor, she spoke with a community herbalist, used an herbal tincture, and soaked her foot in salt water.

“I know for a fact that I need a root canal,” Colburn says, “It used to hurt and now it doesn’t hurt, so I just deal with it.” She pauses. “I know a lot of people who just get their teeth pulled. And the dental piece is important because what your teeth look like has [a] direct impact on what opportunities you have.”

This reality is echoed by rural journalist Sarah Smarsh. “In the past year, the Affordable Care Act, or ‘ObamaCare’, has changed many lives for the better—mine included,” she wrote in an essay for Aeon. “But its omission of dental coverage, a result of political compromise, is a dangerous, absurd compartmentalization of health care, as though teeth are apart from and less important than the rest of the body.”

*          *          *

The fabric of rural America is shifting, in large part due to changes in agriculture. Knudson grew up in North Dakota and says she’s seen that change firsthand. “Our neighbors are farming our land and they seed over 10,000 acres. A lot of the small farms are not there anymore.”

Many children of farmers choose not to take over the farm. Land is then sold or leased to larger farms. Small businesses that once depended on a critical mass of farm families as customers also go out of business. The effects of this rural migration are particularly severe on rural elderly with complex medical needs—and no younger generation remaining in the area to care for them.

Last year, a photographer and I drove across Kansas and Iowa to report on the hidden crisis of farmer suicide. We visited Onaga, Kansas, a small town with a newly renovated hospital. Just blocks from the hospital’s beautiful lobby and squeaky-clean floors were empty streets and boarded up storefronts. One doctor said the hospital had a hard time attracting medical professionals to practice there. The therapist had left months ago, she said, and they were struggling to fill the position.

An online search for “benefits for rural medical professionals” turns up a slew of sites about attracting medical talent to rural communities. Rural medical establishments are advised to advertise the lower cost of living and ability to buy acreage, less traffic, a quieter life, student loan forgiveness in certain underserved areas, “the potential to become the ‘town hero,’” more time spent with patients, and increased proficiency due to physicians seeing “a broader scope of illness.”

Still, rural communities are facing the closure of hospitals and clinics. In 2016, The National Rural Health Association (NRHA) announced that 673 rural hospitals were at risk to close. Of those, 210 were at “extreme risk” of closure. The NRHA warns that “Medical deserts are forming across the nation, significantly adding to the health care workforce shortage in rural communities. Seventy-seven percent of rural U.S. counties are already considered Primary Care Health Professional Shortage Areas.”

Knudson says the health care industry is undergoing a significant transformation in terms of how medical care is being reimbursed. “Our reimbursement system is moving from a volume to value,” she says. ”Historically hospitals have been reimbursed by the number of hospitalizations they provided—you have 10 hospitalizations and you get reimbursed for 10 stays. Our country has really shifted as much as possible to outpatient to make health care more affordable.”

That means a decrease in admissions, more outpatient procedures, and less reimbursable care for hospitals. Additionally, Knudson says many of the rural hospitals closing are in states that have not expanded Medicaid, which has led to a higher number of uninsured patients. “When people are uninsured, it’s difficult to collect payment for that hospitalization.”

Hospital closures can be devastating to rural communities, creating gaps in access to the detriment of residents. “Many of these hospital closures are happening in areas with the highest concentration of heart disease and diabetes, and in some of the poorest communities in the country,” says Maggie Elehwany of the NRHA. “When that hospital closes, it’s like putting a nail in the coffin of that community. You can’t attract businesses or families with kids or keep retirees. So we’re fighting not only for rural hospitals, but also for the economies of these rural communities as well.”

In June 2017, Missouri Congressman Sam Graves introduced the Save Rural Hospitals Act (H.R. 2957). The bill doesn’t increase reimbursements, but it does offer stability for “the closure crisis” by eliminating cuts and Medicare Sequestration for rural hospitals. It also establishes a new Medicare payment designation, called the Community Outpatient Hospital, that would guarantee rural access to emergency care and give hospitals the choice to offer outpatient care. The bill was co-sponsored by 21 representatives (14 Republicans and 7 Democrats), but it is still waiting for a vote.

*          *          *

Rural residents can’t afford to wait, so they are using the assets they have. Rural communities are known for being innovative, self-sufficient, and used to organizing quickly in an emergency. Families may have been rooted in one area for generations, which manifests in a deep knowing of their neighbors, as well as each other’s talents and stressors. And rural communities are often filled with people who want to help one another.

One story Alana Knudson tells me goes like this: One winter, in a northern rural community, an elderly man was treated for chronic urinary tract infections. He was treated and advised by medical staff to flush his kidneys as much as possible by drinking water. But he soon returned with another infection. When a community health worker visited his home, she discovered the man lived in the back of a shed, did not have an indoor toilet, and had to haul his own potable water.

At last, the urinary tract infections made sense. Knudson says, “It was not easy for this elderly man to traverse the snow and the cold in the dark to access the outdoor restroom, so he limited his fluid intake which contributed to reoccurring UTIs.”

To serve the health care needs of the nearly 60 million Americans who live in rural communities, Knudson says “it takes an entire team.” Ideally, Knudson says community health workers are part of that team. As public health workers who are also trusted members of the community, community health workers are particularly equipped to provide valuable connections between health or social services and the community. Primary care providers, pharmacists, social workers, health departments, and even agriculture extensions are critical members of the rural health care team. Knudson says, “A lot of different entities come together and complement each other. We can’t afford the luxury of duplication, so we really work together.”

“People come together to support others,” she says. “In my home community in North Dakota, we had a neighbor who had a heart attack during harvest, and all of us got together and finished the harvest for him. If you needed the help, you could count on your neighbors doing that.”

This frame is important, Knudson says, as much of the media attention about rural communities has been negative. As a result, she says, “There is such dystopia about rural America. We’re hearing from some rural communities that potential businesses are saying ‘we’re not interested in investing in rural America.’”

New analysis from the Center for American Progress estimates that as many as 6.3 million people could be at risk of losing Medicaid under this new policy.

Get TalkPoverty In Your Inbox

Adding so-called “work requirements” to Medicaid has long been on GOP leaders’ wish list. Most recently, it emerged as part of Congressional Republicans’ unsuccessful efforts to repeal the Affordable Care Act last year. And Republican governors in a slew of red states have been chomping at the bit to add work requirements to their Medicaid programs; while all eyes were on the health care debate in Congress, at least 10 states requested authority to do so last year alone, with the potential to impact 640,000 people. More states are likely to follow suit after the release of today’s guidance.

While the policy might sound reasonable at first blush, upon closer inspection it’s just another strategy for ripping health insurance away from the people who need it most—unemployed and underemployed workers struggling to make ends meet.

According to the Kaiser Family Foundation, about 25 million working-age people were covered by Medicaid in 2016. Most—roughly 60 percent—were working themselves, and nearly 80 percent lived in working families. And of those not currently working, 6 percent were looking for work, 30 percent reported caregiver obligations, 15 percent were in school, 9 percent were retired, and just over one-third reported facing health problems.

Taking away these people’s health insurance isn’t just cruel; it’s wildly counterproductive. Study after study shows that having health insurance is associated not only with better health but also with increased work capacity, which translates into higher wages and earnings. Medicaid plays a central role in making it possible for people with disabilities and chronic health conditions to work, as it is the nation’s largest provider of home- and community-based services such as personal attendant care.

History also shows that work requirements not only fail to improve long-term employment outcomes—they actually leave people worse off.

In 1996, as part of the legislation that famously “[ended] welfare as we know it,” Congress converted Aid to Families with Dependent Children into Temporary Assistance for Needy Families (TANF) and introduced a new policy requiring most adult recipients to participate in qualifying work activities as a condition of receiving cash assistance. While some TANF recipients did initially experience gains in employment—thanks in large part to the strength of the labor market during the booming economy of the 1990s—those gains ultimately proved to be short-lived. Few TANF recipients were able to secure stable, long-term employment with decent wages. Many others were unable to meet TANF’s stringent work requirements at all, due to employment barriers such as caregiving obligations, health problems, low levels of education, and criminal records. As a result, they were left without assistance even though they hadn’t found work.

Notably, while the letter sent to state Medicaid directors today says Trump’s new policy won’t apply to pregnant women or people receiving Medicaid on the basis of disability, the guidance itself admits that this will fail to protect the many people with disabilities and health conditions who don’t fall into that bucket, noting: “CMS recognizes that individuals who are eligible for Medicaid on a basis other than disability (and are therefore classified for Medicaid purposes as ‘non-disabled’) may have a disability under the definitions of the Americans with Disabilities Act.”

A study by researchers at the University of Michigan released in December suggests that people with disabilities and health conditions make up a large part of the population at risk of losing Medicaid under this cruel new policy. Two-thirds of Medicaid enrollees in that state who were not currently working reported a chronic physical illness, 35 percent reported having a diagnosed mental illness, and one-quarter reported having a physical or mental condition that interfered with their ability to function at least half of the time.

Meanwhile, the letter also concedes that many people may need “supportive services” such as job search help, child care assistance, transportation, or disability-related supports in order to work. But it goes on to make clear that states cannot use federal Medicaid funds to provide these types of services and supports.

In short, work requirements don’t help anyone work. Rather, at their core, work requirements are premised on a set of myths about poverty. First, that “the poor” are some stagnant group of people who “just don’t want to work.” Second, that anyone who wants a well-paying job can snap her fingers to make one appear. And third, that having a job is all it takes to not be poor.

Reinforcing these myths is core to Trump’s divide-and-conquer playbook. That’s why he’s so keen to smear Medicaid and other popular programs as “welfare”—a term with a deeply racially charged history, evoking decades of racial stereotypes about who is poor in this country. By using dog-whistle terms like “welfare,” he’s betting that he can paint people who turn to Medicaid and other public programs to make ends meet as modern-day “welfare queens” so we don’t notice that he’s coming after the entire working and middle class.

Meanwhile, a big part of the story here is an unforgiving low-wage labor market dominated by poverty wages and unpredictable work schedules. A minimum wage worker in 2016 had to clock an additional 244 hours to earn the same amount in real terms as she did the last time Congress raised the federal minimum wage back in 2009. As a result, many low-wage workers need to turn to public programs such as Medicaid and nutrition assistance, which have come to function as work supports when wages aren’t enough.

If Trump wanted to keep his campaign promises to the “forgotten man and woman,” he’d embrace policies that address the real problems facing struggling workers and families, like raising the minimum wage. Instead, the president remains hell-bent on taking health care away from tens of millions of Americans, over the objections of the American people—and he’s made it clear that he’s done waiting for Congress.

Editor’s note: To get involved and fight back, visit HandsOff.org to learn more about the Hands Off campaign to stop cuts to health care and other basics that help families make ends meet. 

Updated: This article was edited to include the number of people who would lose Medicaid in the ten states with pending waiver requests. 

By the time I learned I was pregnant, I knew abstinence didn’t work. I also knew I had to do something if I wanted to have a healthy baby. So, I enrolled in methadone maintenance treatment. My doctor insisted on it—he told me it would keep my body from going through withdrawal, which could have caused a miscarriage. But I almost couldn’t afford it. I was in Colorado, one of 17 states that did not cover methadone through Medicaid or state funds. Luckily, I was able to get my treatment paid for through grant money specifically designated for pregnant methadone patients.

Get TalkPoverty In Your Inbox

Because of that grant, I never had to worry about the cost of my treatment. I was able to stand to the side and watch while other patients came into the clinic, begging for an extra couple days to come up with their fee, only to receive the same response from the receptionist: “You could get together money for your drugs, why are you having a problem getting money for treatment?”

I lost count of how many times I heard her say that.

Approximately 2 million people in the United States are addicted to pharmaceutical opiates, and half a million to heroin. The latest report from the Centers for Disease Control and Prevention estimates more than 60,000 overdose deaths in the United States last year. Opioids are now more fatal than car crashes and gun violence. And those numbers don’t include the many people who survive but live with complications such as brain damage for the rest of their lives.

Despite the broad scope of the crisis, data compiled by Rockefeller University’s Addictive Diseases lab show that there are only about 350,000 Americans in methadone treatment, a long-acting opioid agonist An agonist is a chemical that binds to receptors and causes a biological response (in the case of opioids, that response is pain relief). Methadone is an opioid agonist that causes a similar biological reaction to opioids without the euphoric high, preventing the severe physical symptoms of withdrawal. that has historically been the gold standard of care for opioid addiction. Only about 75,000 are in buprenorphine treatment, a newer alternative that is similar to methadone in function and purpose.

There are some basic reasons that so few people receive treatment: More than 30 million people live in counties without a licensed provider of buprenorphine, and the daily process of receiving methadone maintenance treatment at a specialized clinic is incredibly time consuming.

And it’s expensive.

In addition to the limits on Medicaid funding, opioid treatment providers can decide whether or not to accept private insurance. Many decide against it, or contract with just one or two providers, because methadone treatment is difficult to translate into insurance billing terms. Every state provides coverage for buprenorphine/naloxone (naloxone is an additive that prevents abuse of the drug), but patients often have to find cash for treatment regardless of whether the medication itself is covered.

The National Institute on Drug Abuse estimates that the per-patient cost of methadone for providers is $4,700 yearly, but for-profit opioid treatment programs get to decide what they charge their patients. This means the actual cost to patients varies by clinic. Methadone patients I interviewed reported rates that ranged from $350 per month to $200 per week. Buprenorphine patients reported clinic costs between $100 and $300 per month, with medication costs broaching the thousands for those without insurance.

Zac Talbott owns two opioid treatment programs—one in Georgia and one in North Carolina—and is also a methadone patient (through a different provider). He explains to me over the phone that just because Medicaid covers methadone in a certain state, that does not mean the clinics actually accept it. Take Georgia, for example: Although Medicaid has covered methadone for several years, programs that were not directly affiliated with behavioral health entities could not bill Medicaid prior to 2016. Only two clinics met that standard, out of 62 in the state. The rules recently changed, and Talbott’s Georgia clinic, Counseling Solutions Treatment Centers, is now six months into the process of setting up Medicaid billing. He’s unsure how many other area clinics will actually take on the new insurance option.

“[Opioid treatment programs] don’t speak in insurance terms the way the rest of health care does. Insurance bills based on codes. There’s no code for a daily bundled rate,” he explains, referring to the daily or weekly flat-rate most clinics charge their patients.

“For a lot of the bigger corporate entities, it’s easier and more profitable to just take that cash, baby,” Talbott adds, punctuating his point with a morose chuckle.

Patients who struggle to find the money for treatment may live with the threat of an administrative detox hanging over their heads. This is a common technique practiced by many methadone clinics, in which a patient who is no longer able to pay is placed on a rapidly tapering dose to wean him off the medication. The length of these tapers varies by clinic, but they often mean going down by 10mg a day, usually with one- or two-month limits. That’s a far cry from the slow, medically supervised taper recommended for patients choosing to withdraw from treatment.

Medication-assisted treatment is designed for long-term use—sometimes even lifelong. Mary Jeanne Kreek, who was part of the team that developed methadone treatment, explains that methadone and buprenorphine help correct brain changes that may require years of maintenance.

“It’s just like treating depressive disorders. Most people on chronic antidepressants need those for a long time or life,” says Kreek.  “I think they’re very analogous.”

But even these administrative detoxes are less harsh than what patients face at clinics that simply cut them off. Because methadone is designed to remain stable in the body for long periods of time, withdrawal from a therapeutic dose may take up to a week to begin. Once it does, however, it is nearly unbearable. It’s not necessarily the sweats and cold chills, aching bones, diarrhea, racing heart, nausea, and restless legs that make it so difficult. It’s the fact that your brain thinks it’s dying without the drug. That is part of the reason relapse rates after opioid detoxification are so high—some estimates say 88 percent within three years, and up to 70 percent within six months.

Liz Hock Clark, a 59-year-old woman who has been on methadone for 34 years, says her clinic is one of many that simply ceases to dose patients who come in without payment in hand. She isn’t sure if it’s legal, but she’s seen it done, and she’s terrified it will happen to her.

Clark lives in a small apartment in West Virginia. She doesn’t have much furniture, and there’s no internet connection. If she needs to go online, she hops into her beat up 2000 Chevrolet Cavalier and drives to her cousin’s house. She picks up odd jobs, like house cleaning and dog walking, in order to pay for her medication. She does janitorial maintenance for her building in exchange for rent on the apartment. It’s tough on her body, but it allows her to put every penny she makes into methadone. Her clinic charges $15.50 a day. She says when she started methadone 34 years ago in Texas, it was $2 a day. She is terrified of the day when she doesn’t have the money for her clinic, which she fears will be soon.

“I’m not afraid of relapse,” she explains in her soft Southern drawl. “I’m afraid of dying. For someone my age, going cold turkey off 118 milligrams, I don’t know if I’d survive.”

Death from opioid withdrawal is rare, but because of her age, complications like cardiac arrest from a harsh detox are a credible fear.

“The thing is,” she adds wistfully, “I don’t want to get off methadone. I want to stay on it my whole life.”

How do we help patients like Clark access these essential medications without becoming enslaved by the exploitative tactics of some providers? For starters, the burden of methadone and buprenorphine regulations needs to fall on providers rather than patients. And we need to have a lot more payment options for low-income people, who are already more vulnerable to addiction in the first place.

The preliminary report offered by the White House opioid commission asks for expansion of access to medication-assisted treatment. It does not, however, express the need for a mandate on clinics to accept Medicaid, or for any kind of internal restructuring that will make accepting Medicaid and other forms of insurance more attractive to clinics. Trump’s attitude during his recent public health emergency declaration does not leave much hope that the commission’s advice will be followed—his $57,000 allocation will not come close to covering the cost gap. We’ll need to do a lot more if we are going to serve Clark and other patients like her—or like me—before it’s too late.

Now the Trump administration and congressional Republicans seem to be coalescing around a response: They are preparing to open a new front in the war on drugs.

Get TalkPoverty In Your Inbox

The House’s fiscal year 2018 budget, which could be up for a vote as early as next week, shifts resources from treatment to enforcement. It strips hundreds of millions of dollars from public health agencies: $306 million from the Substance Abuse and Mental Health Services Administration (SAMHSA) and $198 million from the Centers for Disease Control and Prevention. Furthermore, the Centers for Medicare and Medicaid Services will lose $219 million if the bill is passed, and Medicaid itself—which covers more than 40 percent of opioid treatment in the hardest-hit states—is also facing extreme cuts. Meanwhile the FBI will get $48 million more, the Department of Homeland Security will get nearly $1.9 billion more, and the Drug Enforcement Administration will get an increase of $98 million from 2017 levels.

By beefing up law enforcement and cutting funding for treatment, the House budget builds on the priorities outlined in Attorney General Jeff Sessions’ notorious memo that re-ignites the war on drugs. In it, he orders federal prosecutors to seek maximum sentences for nonviolent, low-level drug offenses, re-implementing draconian policies that are emotionally and economically devastating to low-income and minority communities.

Decades of evidence already make it clear that war on drugs policies don’t work. The United States’ last experiment with this approach left the country with the largest prison population in the world, without addressing the root causes of drug use and addiction. Ninety-five percent of addicts return to substance abuse when they’re released from prison, compared with just 40 to 60 percent who complete a rehabilitation program.

These relapse rates are especially relevant now, as the opioid epidemic spreads on a massive scale. There were 33,091 opioid drug overdose deaths in 2015—roughly the same amount of lives claimed by firearms and motor vehicle accidents the previous year.

Source: Kaiser Family Foundation.

To minimize this widespread growth, addiction must be met with treatment—not punishment. But currently only 1 in 10 of the roughly 20 million adults in the United States with an addiction disorder receive the treatment they need. Hacking away at the limited budget that does exist for treatment is unlikely to improve the likelihood that people with addiction disorders get help.

Unlike previous drug crises, the American people want addicts to receive treatment. At least in part due to the race of the people affected—about 90 percent of the people who died from opioid overdose were white—this crisis has garnered sympathetic attention from politicians, the media, medical researchers, nonprofits, and the public, and has largely been framed as a public health crisis. Until recently, the attention set the country up to craft a progressive, proactive policy response to the crisis; a response that needs to be scaled up in order to effectively fight this epidemic.

In March 2016, for instance, the Department of Health and Human Services released $94 million in new funding to 271 Community Health Centers with a special focus on expanding medication-assisted treatment (MAT) in underserved communities—expected to treat nearly 124,000 new patients with substance abuse disorders. Furthermore, up to 11 states expanded their MAT services due to SAMHSA funding grants.

If Congress passes this budget and builds on the Sessions approach to criminal justice, the progress that’s been made in treating addiction as a public health issue—along with hundreds of thousands of American lives—will be lost.

It took the entirety of both the state’s regular legislative session and a month-long special session, but the bipartisan bill finally crossed the finish line. The new law will extend the state’s Maternal Mortality and Morbidity Task Force’s expiration date to 2023 and require it to report on disparities in pregnancy-related deaths (including socio-economic status) and best practices in lowering mortality rates in other states, as well as actually evaluate options to reduce maternal deaths.

Get TalkPoverty In Your Inbox

The task force, which was created in 2013, has already identified a lack of early pregnancy care as a significant contributor to death. In some ways, that’s unsurprising: Nearly 25 percent of Texas women are uninsured, and the state leads the country in the total uninsured rate. Because of cost, over the past year 52 percent of Texas women reported skipping a doctor’s appointment or test, not getting specialist care, or being unable to fill a prescription. This is a far higher percentage than what was found in states with similar uninsured rates, such as Florida, as well as in states with similar populations, such as California.

Despite this bleak picture for women in need of care, the legislature failed to send any proposals to the governor that would have actually provided for greater coverage for the treatment and care of women struggling financially.

One reason for the high uninsured rate is the state’s extremely restrictive Medicaid eligibility standards: In addition to failing to expand Medicaid under the Affordable Care Act, parents of two children in Texas must earn less than $386 a month to qualify for Medicaid coverage. (That’s only one-fifth of the federal poverty level, which is $2,050 for a family of four). Texas allows more women to gain care through Medicaid during the duration of their pregnancy, but drops them 60 days after delivery. The task force also found that the majority of deaths occur more than 42 days after birth—likely after many women at risk for death lost access to the program.

In discussing Texas’ maternal mortality rate, many advocates have noted that births paid for by Medicaid (which are unfortunately higher-risk than those paid for by private insurance) significantly increased after the state cut family planning programs by tens of millions in 2011. The cuts must also be factored into understanding why Texas’ mortality rate has stayed consistently high for years after the initial spike.

But, though the state has undoubtedly been slashing family planning funds and shuttering clinics at a reckless rate for several years now, the fact is that the dramatic increases in deaths began before these reckless policies were passed and implemented.

There are other early findings that do not have clear answers yet. Despite being among most likely to be uninsured, Latina women were found to have an even lower mortality rate than white women. In contrast, African American women are disproportionately likely to experience maternal death: While only accounting for approximately 11 percent of births, these women make up about 29 percent of deaths.

The task force’s new responsibility to evaluate approaches in other states will prove illuminating for some of these unanswered questions: North Carolina, for example, implemented a variety of programs to incentivize doctors examining women for conditions that could lead to high-risk pregnancies and provide wraparound supports for those expectant mothers facing health dangers. By doing so, the state made a huge stride forward that should—and must—catch the attention of Texas’ policymakers: It closed the racial gap in the rate of maternal deaths in white and black mothers.

After an onslaught of statistics, it’s important to remember that behind every death statistic is a woman who suffered. Expectant parents everywhere wake up worried about coping with the newborn months. Too many mothers-to-be in Texas, however, must also wake up worried about whether they will even live to see their child crawl or walk.

Given that mothers are the primary or co-breadwinners in more than 60 percent of Texas households, these deaths are not only personal tragedies but ones that can devastate the economic standing of a family. Already, 1 in 4 Texas children live in poverty. And since the average age of new mother is 26, health problems related to birth may hit as a young woman is still working to launch her career with little savings built up.

It would be unacceptable to allow this to continue. The legislature passed a law that will spur research that will illuminate a greater understanding of how to effectively improve maternal health and lower the rates of maternal death. It will be essential, however, for those who truly care to turn that analysis into meaningful change.

Under the Senate’s latest health care bill, my caregivers are at risk of losing their jobs. And if they lose their jobs, my life will be at risk.

Get TalkPoverty In Your Inbox

Six years ago, I was diagnosed with a multi-system disease—myalgic encephalomyelitis, or chronic fatigue syndrome—that inhibits my body’s metabolic system. Although the disease differs from person to person, my condition has been degenerative over the years; for more than a year starting in 2015, it left me unable to speak, eat, or lift my head higher than a pillow.

This is the type of physical debilitation that requires a caregiver.

For the past two years I’ve been completely bedridden, and I’ve hired numerous caregivers to perform myriad tasks for me. They have administered my daily oral medications and flushed my IV with syringes full of saline and heparin. They bring me my toothbrush every morning, and they help me go to “the bathroom” by emptying a plastic urinal beside my bed. They help me bathe by placing a flattened inflatable bathtub on my bed, which I scoot onto so they can inflate it around my body. They fill the tub with water so I can clean myself, then they drain it, I towel off, and they deflate the tub so I can crawl out.

These tasks are essential to my health, and I depend on my caregivers to help me perform them. But the stark reality is that I simply couldn’t afford to employ caregivers without Medicaid.

I receive around 48 hours of paid caregiving every week through California’s In-Home Supportive Services (IHSS), which gets half its funding from the federal government. For the 48 hours a week they cumulatively work, my caregivers are paid California’s minimum wage: $10.50 per hour. Because I believe that is an unfair wage for such a demanding job, I supplement their pay as much as I can —usually an extra two dollars an hour.

Under the Senate health care bill, Medicaid would face massive cuts—up to $772 billion by 2026. Combined with the House budget, which was released earlier this week, those cuts would jump to $1.5 trillion. That would almost certainly cause dramatic reductions to caregiving services in California, as well as every other state in the country. But these cuts will not only impact patients; they will take a toll on the caregiving field and other industries related to health care.

“Caregiver” is an umbrella term that includes several job titles, such as personal care aides and home health aides. These positions account for millions of jobs, and past projections have estimated as much as 38 percent growth in some fields by 2024. But since Medicaid is the largest public payer of long-term caregiving services, the cuts outlined in the BCRA could end up eliminating their jobs, along with others in health care and the broader economy. The Center for American Progress has estimated that the House version of the health care bill—which is substantially similar to the Senate bill—would cost the American workforce 1.8 million jobs by 2022.

Each one of those jobs has dozens of lives attached to it and is part of a vital social equation that nobody should reduce. Not only are jobs and livelihoods at stake, but so is the health of millions of people. Cuts to vital services like Medicaid, Supplemental Security Income, and IHSS will tear down decades of efforts to protect and nurture the working poor, sick people, the elderly, and the disabled.

Instead of giving me the help I need to live and potentially improve my health enough that I can once again contribute to the economy, this bill would put my life in an incredibly vulnerable position. It would also take jobs away from health care professionals like my caregivers. This may be acceptable to some, but to the many millions of people whose fates hang in the balance, it’s entirely unacceptable.

My name is Samantha and I have been a pediatrician for exactly 360 days. I work in Southwestern Virginia, for a hospital system that also provides care to underserved parts of West Virginia and Tennessee. We mainly work with struggling families that rely on Medicaid to provide health care to their children. That means, at this exact moment, you are debating a bill that would directly impact the children that I took an oath to serve.

I could tell you countless stories of medical crises averted, serious illnesses cured, chemotherapy administered, and families counseled through the parts of parenthood that they often did not anticipate. But you are all intelligent people, and you can imagine these scenarios for yourselves. Even if you can’t, I’d hardly be the first to point these stories out.

Get TalkPoverty In Your Inbox

Instead of telling you about what it means to have health care, I want to talk to you about what it means to have health insurance. I want to talk to you about what it means to a parent to worry that they can’t afford the treatment their child needs—and to know, deep down, that they might bankrupt themselves trying to keep their child safe.

First, I want to talk to you about the provisions of your bill that would chip away at coverage for people with pre-existing conditions. Last week, I had the privilege of meeting a young woman and her mother in our clinic. The mother had a heart condition that is often passed genetically from parent to child. As she and I spoke about definitive testing that would tell us if her daughter carries the gene that might cause her to develop the same condition, she started to get nervous.

She was afraid that this test, which could help us treat and protect her daughter, was a medical Catch-22. Without it, we wouldn’t know how to care for her daughter. With it, her daughter might be labeled as a person with a pre-existing condition, which could make her unable to afford the care she needs. And it was all based solely on a tiny gene that has not yet even made her sick.

Even as we told her that her daughter’s heart is currently perfectly healthy—news a mother should get to receive with untainted joy—I could see her eyes fill with tears. She told us that she had been unable to get insurance coverage until recently, because of her heart condition. Insurance companies even resisted covering her children, based on the risk that they may have inherited her heart condition, despite the fact that none of them had been diagnosed.

If you pass this bill, the children who lose their insurance will still come to my clinic. Their parents will bring them even if they aren’t sure how they’ll pay, and even if they know deep down that they can’t. Parents can no more risk the well-being of their ill children than walk on water.

The doctors, nurses, and therapists I work with will still care for these kids when they come. We’ll do it even though medicine is a difficult career. We’ll do it even though it requires sacrifice and emotional risk to care so deeply for these tiny people who need us. We’ll do it not only because it is legally required of us, but because of the little pieces of our souls that our patients have come to inhabit.

I’ll do it for days like today, when I get to see a boy I have cared for since he was a newborn take some of his earliest steps and wrestle through his check-up like it was a game. I do it for the incredible growth I have witnessed in his mom and dad: a young, at-risk couple who have become thoughtful and loving parents over this past year. I do it for the moment when the baby stops pulling on my stethoscope just long enough to give me an unprompted hug, or when I give him a high-five for doing a good job and he gives me high-fives over and over until I absolutely must move on to my next task.

I am asked to give these children the care they deserve, and to do right by them and their families. In return, I get these little gifts now and then. Small rewards for living as “men and women for others”—the core belief instilled in my medical school classmates and me at our alma mater.

I like to think that you all became representatives of the American people with a similar goal—to be “men and women for others.” I like to imagine what our nation might become if lawmakers such as yourselves did your work by the same principles that guide us as caregivers through each day.

I would hope that you choose to live by at least one of our principles, known in ethics circles as non-maleficence. You might be more familiar with its colloquial phrasing, “First, do no harm.” With this health care bill, you hold the futures of millions of Americans in your hands. Please, if you keep nothing else in your heart as you vote in the upcoming days, think of your constituents and hold close the aspiration to “first, do no harm” to those who are depending on you.

With my sincerest thanks,

Samantha Cerra, M.D.

Editor’s note: Some identifying details have been changed in order to protect patient privacy; however, the essential content and experiences represented are recounted faithfully.

The Senate’s stealth strategy here should come as no surprise: They learned from the House.  After the Congressional Budget Office (CBO) found that 24 million people would lose health care under the initial version of the AHCA bill, constituents responded by flooding House offices with phone calls. Paul Ryan and Republican leadership were forced to cancel a vote in mid-March, because the public opposition to the bill made it impossible to secure the votes they needed. The House then went back to their members and passed a new version, with no CBO score or media coverage, in order to mask the effects of their bill.

Get TalkPoverty In Your Inbox

That handed Senate Majority Leader Mitch McConnell the playbook he needs to get his bill passed.  The Senate companion to the House bill is being crafted under lock and key, foregoing committee hearings, mark-up, or any public debate. McConnell went as far as kicking all non-leadership staff out of secret discussions last month to prevent them from disclosing information about the bill to the public. Even rank-and-file GOP Senators—who control the chamber and will likely be tasked with sending the legislation to the president’s desk—claim not to know what’s in it. According to Axios, the bill will not be released publicly even once it is complete. Instead, Mitch McConnell plans to send the completed text to the Congressional Budget Office for review, without any public scrutiny.

What’s shocking is not that the Senate is attempting to pass this bill under a shroud of secrecy; it’s that the strategy is working. As Vox’s Jeff Stein has been chronicling, most mainstream media outlets have either ignored the Senate health care discussions or downplayed their urgency.

Scanning the front webpages of the New York Times, Wall Street Journal, Washington Post, and CNN on Monday revealed no mentions of the health care bill—and the same was true for much of last week. Even politics-focused outlets like Politico and the Hill have largely relegated their coverage of the health care fight to specialized newsletters or paywalled content.

Another day without a SINGLE frontpage story on the Senate’s bill to take health care from millions. Like living in an alternate universe. pic.twitter.com/bQeYQoTv54

— Jeremy Slevin (@jeremyslevin) June 19, 2017

Not one mention of health care vote on front page of any major news outlet. PAY ATTENTION, MEDIA. pic.twitter.com/uCEgJiTWAy

— Jeremy Slevin (@jeremyslevin) June 16, 2017

Instead, lead stories focus almost exclusively on the Trump-Russia investigation. Attorney General Jeff Sessions’ testimony before the Senate Intelligence Committee last week dominated national news coverage. Later in the week, news that the FBI was investigating the president himself—and the president’s histrionic response on Twitter—crowded out any discussion of the health care bill.

The media have their excuses. Without senators willing to discuss the plans publicly, reporters have found it difficult to break news on the topic. Cable news has no compelling soundbites to play for their viewers because Republican Senators are not holding public hearings, committee mark-ups, or press conferences on the bill.

But, as newsworthy as Russia’s interference in the 2016 election is, a bill to take away health insurance from millions is, at the very least, equally worthy of public attention. The legislation Senate Republicans are currently discussing is likely to reinstate annual and lifetime benefit limits—even for employer plans outside of the ACA exchanges. This could be a death sentence for people who get sick and require expensive care to stay alive.  Recent analysis from the Center for American Progress (full disclosure: TalkPoverty.org is a project of the Center) revealed that up to 27 million Americans could face annual limits. And the Senate is planning to go beyond repealing the Medicaid expansion—which was part of the ACA—by imposing deep cuts to the traditional Medicaid program that helps seniors, kids, and people with disabilities in every state.

What the Senate is doing is an affront to democracy, but there has been little public outcry because there has been little sunlight on the Senate’s process or underlying legislation. For the public to hold their representatives accountable, they need to have accurate—or at least basic—information on what Congress is doing. Just as dogged journalism has revealed some of most critical details of the Russia investigation, it is the responsibility of the press to draw out the contents of the Senate’s health care bill—before it is too late.

Editor’s note: For more on the healthcare news that no one is talking about, take a listen to the latest episode of CAP Action’s Off-Kilter podcast here.

In 2010, she went to the eye doctor for difficulties she was having with her vision. She thought she needed a new glasses prescription. Instead, she was admitted to the emergency room because the ophthalmologist thought she was having a stroke or a brain tumor.

Many appointments and tests and anxious weeks later, she was diagnosed with multiple sclerosis (MS). MS is an autoimmune disease in which the body attacks the membrane around its own nerve fibers, causing scar tissue. A typical diagnosis requires two to three lesions on the brain; my sister’s brain had eleven. Because MS attacks the central nervous system, symptoms vary widely, ranging from fatigue and vision problems to seizures and paralysis. The worst part about MS is its unpredictability; one day my sister can seem healthy and the next day she can be overwhelmed with nerve pains, muscle spasms, and immobility.

At the time of her diagnosis, my sister was a 25-year-old stay-at-home mom to her 3-year-old daughter. Her husband’s insurance covered her then. But within a year of her diagnosis, they filed for divorce.

Get TalkPoverty In Your Inbox

This is not uncommon for women diagnosed with serious illnesses. A 2009 study published in the journal Cancer found that a married woman diagnosed with a serious disease is seven times more likely to be divorced or separated than a man with a similar diagnosis. Among study participants, the divorce rate was 21 percent for seriously ill women and 3 percent for seriously ill men.

After my sister’s diagnosis, her husband withdrew from the family. He engaged in addictive and destructive behaviors. That left my sister in a position where her access to health care was tied to a marriage that was not good for her or her daughter.

The Affordable Care Act, a.k.a. Obamacare, made it possible for her to live as a single mom with a chronic illness.

It qualified her for Medicaid coverage in Montana. It ensured that she would not be discriminated against in the health care market because she had a pre-existing condition. And it let her choose which treatment plan would be right for her and her body.

For six years, she experimented with different medications, starting with the cheaper ones (which cost $1,000-$3,000 a month). Her symptoms did not improve: Sometimes she relapsed, sometimes she got sicker, and sometimes she had to take drugs to deal with symptoms caused by other drugs. Still, she felt it was worth it to try to slow the progression of the disease.

Last year, she found a treatment that works: It’s called Rituxan and it would cost her $65,000 a year without insurance. It’s part of a chemotherapy treatment she does every few months. It leaves her feeling sick and unable to work for a few days, but it works.

Last spring, Maggie graduated from Montana State with a degree in social work. She recently got a part-time job at an assisted living facility, which is funded in part by Medicaid.

It’s a good fit for her, because full-time work would be incredibly difficult with both her MS and her current treatment plan. It’s also a good fit for her because Maggie is one of the most caring people I know. She works with some of the most marginalized people in our society—elderly individuals, people with mental illness, those with severe disabilities—all unable to work or care for themselves.

The Congressional Republican health care plan could change all of that.

Under their plan, my sister could lose Medicaid because her part-time, low-wage income would disqualify her.

Under their plan, my sister could lose coverage for Rituxan, the only treatment that has worked for her so far.

Under their plan, my sister’s pre-existing condition could be used as justification to raise costs on her medical insurance.

Under their plan, my sister’s mobility and opportunity would be more limited by her economic insecurity than they are by her MS.

This is what it means to be uninsured. It means you cannot live safely and comfortably in your own body.

It is excruciating to have to determine the trade-offs your family can make to maintain your sister’s health care. It is even worse to make those choices, knowing they would become worse under all the new iterations of the conservatives’ health care plan. But the true hell is having to have to do it all in public: To have to write articles like this with personal testimonies, create heartbreaking GoFundMe campaigns, share that video of Jimmy Kimmel talking about his baby with tears in his eyes, in the hopes that they go viral. Maybe, if one of them is sympathetic enough, someone will look my sister in the eyes and decide her pain, and her life, should be taken seriously.

At the very least, today, I will be calling undecided senators in Congress so that they can understand the impact of their vote. But let it be known that it’s only one among hundreds of efforts my family, like so many others, undertake to get access to health care for the people we love.

The possibility that I could lose my insurance looms over me like a death sentence.  My son was born with a very rare genetic diagnosis, which comes with a half dozen specialists. He’ll need those doctors until he is at least 18 years old, and there is no way that I can pay for all of them myself (I’d have to earn over $100,000 a year).  Then, last December, my daughter got sick, and I was diagnosed with an injury that required possible surgery—plus specialists, appointments and medication.

Now I am racing to schedule as many appointments as I can, while I still have that option.

Get TalkPoverty In Your Inbox

In January and February, my kids and I had 20 appointments between the three of us. That takes time, energy, and money. It impacts my children’s education—it decides when they attend school, and when they miss it. It also impacts when and how much I work, since I’m spending hours driving to appointments, talking with providers on the phone, and communicating with Medicaid about what is covered and what is not. At any given time, I may need to take my son to an appointment. And to deal with my injury, I have had to spend a lot of time resting.  This translates to an odd work schedule that touches 6-7 days per week, somewhere between the hours of 6:30 AM – 11:00 PM.

My family isn’t the only one like this.  At least 23 million people would lose their health care if the House health care bill becomes law. I know those people. I have close friends with children on the autism spectrum.  I have a sibling with Down syndrome who nearly died last year.  I have two parents whose health care needs increase every year—including a father who has battled cancer four times in the past four years.  We are not just a number that can be reviewed or dismissed.

And then there’s the issue of pre-existing condition exclusions that will drive up the prices for the care we do have. If my son is no longer able to see his specialists, it will severely impact his life. If he doesn’t receive the surgery he needs in a few years, it will affect his entire body.

As legislators debate the fate of healthcare for Americans, there are millions of families like mine—with mothers, fathers, sons, and daughters who deserve basic, daily, necessary care—from vitamins and supplements to cancer treatments.  No child deserves to live while another dies, just because their family has more money to afford treatment.

I beseech the legislators to consider what they would do for their families if they were suddenly faced to choose healthcare for their loved ones, or none at all.  May wisdom—not profit—prevail.

Though some of the damage that this bill does has been well publicized, there is a particularly odious impact of Trumpcare getting very little attention: It threatens to force seniors and people with disabilities into nursing homes and institutions.

Get TalkPoverty In Your Inbox

For the last several decades, disability rights advocates have fought to expand funding for Medicaid-funded home and community-based services, so that seniors and people with disabilities can live in their own homes, control their own lives, and be fully included in society. Thanks to generations of advocacy, millions of Americans with disabilities receive Medicaid-funded home care today.

When the Affordable Care Act was passed, legislators started to prioritize funding for programs that provide people with disabilities with services in their homes, rather than relegating those who require additional support to institutions and nursing homes. Through the ACA, Congress created several programs designed to reward states with additional Medicaid funds if they expanded in-home care for seniors and people with disabilities.

One of the most successful of these programs is the Community First Choice State Option (CFC), which provides funding for services that help seniors and people with disabilities get out of bed, dress, and perform other activities necessary for daily life. A 2015 review of the four states that have been using the CFC the longest found that the program was serving over 500,000 people—today, that number is likely much larger. But the AHCA sunsets this program in 2020, cutting about $12 billion in funding from in-home care from seniors and people with disabilities over the next decade.

That is only a small part of the $839 billion in Medicaid cuts AHCA imposes overall, which themselves will devastate Medicaid-funded services to seniors and people with disabilities across the country. AHCA also sets “caps” on each states’ Medicaid funding that will grow at a much slower rate than the existing Medicaid funding system, cutting hundreds of billions of funding over the next decade relative to current law. In addition, the caps also freeze in place state funding decisions at the time they’re made—so a state that offered relatively stingy benefits to people with disabilities or children in 2017 would no longer be able to access additional federal funds to expand those services in the future.

Some Republican House members realized the harm AHCA will cause to their constituents with disabilities. Rep. Daniel Webster (FL-10) bemoaned the likely impact AHCA’s Medicaid cuts would have on seniors living in his district, so he introduced an amendment to exempt nursing homes from AHCA’s caps on Medicaid funding during the March push to pass the bill. The amendment did not offer protections for home care, so it actually would have worsened Medicaid’s longstanding bias in favor of institutional care.

The GOP leadership still refused to adopt Webster’s amendment. For them, even weak protections for seniors and people with disabilities go too far.

Despite stating clearly on Tuesday that his “concern that Florida will be penalized under the American Health Care Act because demand for Medicaid-funded nursing home beds has not been fixed,” Webster voted in favor of the American Health Care Act today—in exchange for “assurances” from the Trump White House that his concerns will be addressed in the future.

Republicans in the House continue to put their faith in Donald Trump, instead of insisting on meager protections of their own constituents’ needs. For too many members of Congress, the needs of seniors and people with disabilities are taking a backseat to trusting Donald Trump —and advancing his health care bill—at all costs.

Health insurance companies did not have to cover mental health care until the Affordable Care Act made it mandatory. If that requirement is repealed, people will get less treatment. Without treatment, some people will succumb to their illnesses. That means more suicides.

That’s not hyperbole. It’s not hysterics, or fear-mongering.  I’ve seen it happen. My dad killed himself a few weeks after my 12^th birthday.

Get TalkPoverty In Your Inbox

Even 12 years after my dad’s death, I’m haunted by the memories of that night. I can still see my mom crying as she broke the news to her two kids, the shock on my older brother’s ghostly white face, and the red and blue lights of a police car swirling on our living room walls. The sight of police lights still makes my stomach drop.

My father’s suicide has shaped my life. It brought isolating numbness, crushing grief, and  strange looks from the people in my small town who were uncomfortable with its taboo. My family’s income, which was decidedly middle class before my dad’s death, was more than halved by his passing. We made it work because we had Social Security survivors benefits, free and reduced price lunches, and could take out a home equity loan that we still carry today. That made it possible for my mother—an actual, honest-to-God superhero—to keep my brother and I fed and clothed on less than $40,000 a year.

Though Trump and the House Freedom Caucus may treat it as such, mental health is not a fringe issue. Every year, more than 44,000 Americans die by suicide. On average, it affects demographics that voted for Trump the most: 70 percent of suicide victims in 2015 were white men, with the rate of suicide being highest among middle-aged men. Like my dad.

My dad died, at least in part, because he wasn’t in treatment. Under Trumpcare, millions of Americans will find it difficult to seek treatment as well. Trump is gambling with their lives to pass a health care plan that will cut taxes for the wealthy.

If the bill passes, I could struggle to afford the therapy that helps me deal with the grief of losing my father. And there will be more 12-year-olds, like me, who will lose their loved ones. I can picture them now: hugging their knees, and watching the red and blue lights dance on the walls of their house as their world comes crashing down.

I don’t wish that on anyone. I just wish our president felt the same.

That leaves House leaders in a tight spot, since their bill is deeply unpopular with lawmakers and voters. Late Wednesday night, in an effort to gain support from the ultra-conservative House Freedom Caucus, they added new provisions that make the bill’s Medicaid cuts—which already slashed the program by $880 billion—even more extreme.

Get TalkPoverty In Your Inbox

The “manager’s amendment” includes a provision that encourages states to impose work requirements on adults who receive Medicaid. In theory, the provision ensures that “able-bodied adults” who receive Medicaid benefits are either working or looking for work. But in reality, this amendment could take health insurance away from Americans with disabilities or serious illnesses, and even new moms experiencing complications from childbirth—stripping them of the health care that would enable them to return to work.

Here are three Americans who would be at risk of losing needed coverage under House leaders’ latest proposal:

Robin Conrad — Center Ossippee, New Hampshire

In 2012, Robin was laid off and lost her health insurance. She went without health insurance while she worked temp jobs, until she was hired full-time nearly two years later. In 2015, she was diagnosed with Stage 4 metastatic breast cancer and was eventually forced to take long-term disability leave. Her employer terminated her job—and her health insurance—when she still had pressing health care needs.

Robin can get the medication she needs because she’s covered by the ACA’s Medicaid expansion. She noted that without it, “I probably would not have been able to get coverage even if I could afford it, because my situation would have been considered a pre-existing condition.”

Sarah Borgstede — Belleville, IL

Sarah was married and was unemployed when she became a new mom.  She and her husband decided that she should stay home with their baby boy, so that they wouldn’t have to worry about paying for child care.  Her husband continued working as a musician and a teacher, but neither job offered insurance—he either purchased private insurance went without it entirely.

Sarah’s husband passed away when he was just 28, after a long battle with sepsis. Sarah says that if she been forced to look for work within 60 days of having a child—like the new Medicaid work requirements demand—she would have needed to work full-time just to afford child care, while her husband continued working 80 hours a week to cover the rest of the bills. Then, Sarah says, “my son would have grown up without both of his parents.”

Ericka McClung — Clendenin, West Virginia

Six weeks after she qualified for Medicaid coverage under the ACA, Ericka found out she had Stage 3 breast cancer.  After chemotherapy, radiation, and a double mastectomy she’s now cancer free, but she needs to continue hormone treatments for another eight years.

“If the cancer came back I could never afford the treatments,” Ericka says. “My whole entire family put together could not afford my treatments.”

So far the debate on Capitol Hill—unlike the conversations taking place in town halls—has been abstract and detached. But for the millions of Americans living with the uncertainty and inevitable consequences of these decisions, these numbers are deeply personal. Congress is arguing about their health, and the stress of it all is making them sick.

Get TalkPoverty In Your Inbox

Alaskan small-business owners Colleen Mondor and her husband, Ward, are two of the 24 million Americans who stand to lose coverage if the new bill passes. They have not had a single night of uninterrupted sleep since 2005—that’s when their then-3-year-old son was diagnosed with a rare form of Type 1 diabetes that requires them to wake up to check his blood sugar.

Colleen and Ward are both cancer survivors, and before the Affordable Care Act they got their insurance through a $1,000 per month high-risk pool that required them to pay $10,000 out-of-pocket before their coverage kicked in. They have the coverage they need now, but the years of fighting to get and stay insured has taken a physical toll on their health.

“Luckily, nothing bad like the return of cancer, but we both experience intense, hallucinatory migraines and severe exhaustion,” Colleen says. “I think about stress all the time… I never thought as much about insurance before but now feel dread and a sick feeling in my stomach every year when we receive the letter to re-enroll. Until you face the threat of losing or not being able to get quality insurance, you just don’t know.”

The Republicans’ new health care bill will usher in insurance plans that will cost more but cover less, forcing millions of Americans to choose between the care they can afford and the care they need. When a family lacks the security of quality health insurance, it too often leads to greater financial burdens, instability, and increased stress levels that produce poorer health outcomes. That will add to the strain of an already stressed-out nation, jeopardizing the health and well-being of folks who can least afford to be sick.

Though its toll is often poorly recognized and underestimated, the cumulative wear and tear of stress leads to an increased risk of illnesses like high blood pressure, depression, and heart disease. It even accelerates aging and may cause premature death. That’s compounded by any unhealthy, inadequate coping habits, like smoking or substance abuse, which make the harmful effects even worse.

As the gap between the rich and the poor continues to widen, individuals and families struggling to maintain financial security are being exposed to unprecedented stress levels, and the impact is grave. People of color and individuals struggling with poverty, who bear the brunt of the growing inequality, are also absorbing the impact of the deadly stress that comes with it.

President Trump and the Republican-controlled Congress are pushing a health care plan that casts millions of already chronically-stressed Americans—like Colleen Mondor and her family—into an even more dire state of anxiety as they struggle to find new coverage (let alone good, affordable insurance). But right now, the House of Representatives has a choice: They can move forward with their destructive health care law, or they can reject it and develop a plan that doesn’t threaten the health care—and actual, physical health—of millions of people.

As for Colleen, she’s also hoping for something that should have been present all along.

“Empathy is the major missing component in this conversation,” she says. “I always say: you are fifteen minutes away from being me.”

No such luck.

Tuesday night, Secretary of Health and Human Services (HHS) Tom Price and Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma issued a letter to the nation’s governors laying out their vision for Medicaid. In the letter, they indicate a willingness to waive longstanding rules that are designed to protect low-income Americans from coercion, poverty, and exploitation.

Get TalkPoverty In Your Inbox

Price and Verma assert that “rigid and outdated implementation and interpretation of federal rules” hinder the Medicaid program from accomplishing its goals. They reiterate a popular (and false) conservative talking point that by providing states additional funds to expand Medicaid, the Affordable Care Act discouraged them from addressing the needs of people with disabilities on traditional Medicaid. Finally, they lay out HHS’s willingness to grant almost every ill-advised “flexibility” request in the right wing’s wish list on Medicaid—many of which place people with disabilities, seniors, and low-income Americans at extraordinary risk.

Making Medicaid Harder to Access

The letter indicates the Trump administration would be willing to let states introduce premiums and higher cost-sharing for Medicaid beneficiaries.  These measures were rejected under the Obama administration, since they interfere with the program’s ability to serve low-income people. But based on Price’s letter, they now look likely to sail through.

In particular, Price and Verma suggest states may wish to apply for permission to allow “emergency room copayments to encourage the use of primary and other non-emergency providers for non-emergency medical care.” It’s a laudable goal, but in rural areas where there is a shortage of clinicians who accept Medicaid patients—a common problem due to the program’s low reimbursement rates—emergency rooms are often the only practical option for low-income people. Policies that make emergency room visits more expensive are likely to simply discourage people from seeking necessary care.

Price and Verma also suggest states explore charging Medicaid beneficiaries premiums. Such measures ignore the underlying reality that Medicaid serves the deeply poor, who cannot sustain these costs by definition. Still, the suggestion is familiar to Verma—under her leadership as a health policy adviser to then-Governor Mike Pence, Indiana introduced monthly premiums in 2015. Failure to pay them was grounds for losing coverage, or having less access to vital health care services.

This newfound flexibility would also make it possible for states to enact damaging policies that they have been requesting for years. Arizona, Indiana, Kentucky, Montana, and Arkansas have all previously requested permission from the federal government to impose work requirements on Medicaid, which would deny people access to the program unless they are employed.

Arizona is also pursuing a five-year cap on Medicaid benefits. Under the plan, an individual must either be working full time or be receiving disability benefits from the Supplemental Security Income (SSI) or Social Security Disability program in order to keep Medicaid benefits past the five-year cap.

Both work requirements and time limits are likely to disproportionately impact people with disabilities. Even though the time limit proposals provide exemptions for people who are receiving benefits through SSI,  many disabled adults qualify for Medicaid on the basis of their income—not their disability status with the Social Security Administration. That’s because many disabled people are unable to navigate the Social Security Administration’s complex bureaucracy or, particularly among people with psychiatric disabilities, may not be fully aware of their own disability. As of 2009, 1 in 5 adults eligible for Medicaid on a basis other than disability (2.3 million people) and 1 in 10 children eligible on a basis other than disability or child welfare assistance (about 3 million children) had a mental health diagnosis.

As for work requirements, people with disabilities are more likely than other Medicaid recipients to be unemployed. These measures would place them at risk of losing the health care coverage that would help them enter or return to the workforce. Indeed, where Medicaid has been expanded, research has shown that participation in the workforce for disabled adults has increased.

Weakening Protections Against Institutionalization

In their letter, Price and Verma also indicate an intent to weaken vital Obama administration protections for seniors and people with disabilities.

In 2014, the Obama administration issued a rule designed to protect seniors and people with disabilities who receive home and community based services. The Home and Community Based Settings Rule helps ensure that when states fund community services for people with disabilities, they do so in a manner that promotes integration instead of replicating the isolation and control of institutional environments.

The Settings rule requires every state to ensure that those receiving community supports have the right to do basic things like invite visitors into their own home, choose when they eat or what they do during the day, have legally enforceable rights under a lease, and possess options as to where to live other than group homes and other ‘disability-specific settings.’ States have until 2019 to comply with the Settings rule, and a broad range of flexibility to implement it in a way that best meets the needs of their residents.

The rule is designed to protect individual liberty, so that Americans will not lose control over their most basic choices by virtue of old age or disability. Prior to the Settings rule, states were moving to fund community-based services on the grounds of old institutions or by organizing segregated villages “clustering” adults with intellectual disabilities all in one place, limiting contact with the broader society. The Obama administration rightly recognized that these “gated communities” grouping people with disabilities together to get services were institutions by another name, so it limited states’ ability to fund them with scarce community services dollars.

But Price and Verma intend to move the implementation date from 2019 to an unspecified period in the future. Beyond that, their letter also calls for rolling back federal oversight, placing individuals with disabilities at greater risk of warehousing by state governments that are too often willing to defer to service providers about the level of rights their disabled residents should be afforded.

Elsewhere in the letter, Price and Verma express interest in revisiting 2016 Obama administration regulations governing how and under what circumstances states can contract out the operation of their Medicaid programs to private insurance companies, while fast tracking further state requests for “flexibility” in Medicaid.

Advocates at the state level must seek to organize in order to stop the worst of these ill-advised “flexibility” requests that are emerging from state legislatures and state Medicaid agencies. And governors in both parties must be told in no uncertain terms that taking advantage of the Trump administration’s offer to allow the gutting of Medicaid will not be viewed kindly by their voters.

Though this administration fails to recognize it, the rights of people with disabilities deserve federal protection. Just as states frequently fail to protect the rights of racial and ethnic minorities, women, and the LGBTQ community (all constituencies who are also under attack by the Trump administration), so too are state governments frequently willing to compromise the rights of disabled Americans for the sake of cost, convenience, or prejudice.

We can’t afford to be flexible when it comes to freedom and basic access to health care for every American.

Her symptoms first appeared a little after she turned one. She still wasn’t walking or crawling, but otherwise she was healthy and was hitting her milestones—she could say about a dozen words, feed herself, and play with her toys. But when she was around 14 months old, we noticed that Caroline was making repetitive movements with her hands that didn’t seem voluntary. Within a couple of weeks, she started losing her words and choking on her food. Eventually, she started losing her ability to hold things with her hands. We finally got her diagnosis when she was 17 months old.

Get TalkPoverty In Your Inbox

Now Caroline takes about ten different medications, multiple times a day. She takes 4 different types of medication for her seizures, which she has about 90 times a year. Without them, she would probably seize all throughout the day, every day. She undergoes a couple of hours total of lung treatment every day to avoid pneumonia,  and takes other medications to relax her stiff body, make sure she doesn’t vomit all the time,  and help her sleep. Her involuntary movements keep her up at night, and if she didn’t take medication she would only get a couple of hours of sleep every night.

Without Medicaid, I don’t know if we’d be able to afford this treatment. For Caroline, this is a matter of life and death.

Medicaid also offers several hours of skilled nursing care, which allows me and my husband to hold jobs. Without that coverage, one of us would have to quit our jobs—then we would not be able to afford all of the medical care that Caroline needs. That alone would put her life at risk.

I never imagined that I would have a child who would be dependent on us for every aspect of daily living for the rest of her life—from changing her diapers, to repositioning her to make sure she is comfortable throughout the day. And I never imagined that we would depend so much on a program like Medicaid.

But I also never imagined that I could love someone this much.

I want Caroline to live. I want her to feel safe, I want her to feel loved, and I want her to live in our home so that I can take care of her for as long as she is alive. Medicaid is the only way for us to be able to do that.

I would like to invite President Trump to meet Caroline and spend time with her, or with other kids like her. I think he would see first-hand how Medicaid helps us function as a family.

For more than a year I was unable to speak, sit up, or eat solid food. In June 2015, first responders wheeled me into the emergency room, too weak to eat, drink, or elevate my head. I had been, essentially, waiting to die of dehydration. Besides administering some much-needed fluids, doctors offered little help.

Get TalkPoverty In Your Inbox

I have among the most severe cases of chronic fatigue syndrome (sometimes known as myalgic encephalomyelitis, or ME). It’s a devastating multi-system disease that’s been given a patronizing name. The cause is still unknown, which makes getting a proper diagnosis—often necessary for insurance and disability coverage—near impossible.

When I was released from the hospital in 2015, my family learned that California’s state-administered Medicaid health care program, Medi-Cal, would not cover the ambulance ride to transport me home because none of my conditions were considered “legitimate.” I took the ambulance anyway, and paid around $1,500 for the ride out-of-pocket.

Several months later, I became so dehydrated that my family decided to pay more than $150 a day for a nurse to come to our house to administer intravenous saline to keep me alive. Large doses of intravenous saline were, and still are, the only way to keep my body functioning.

My medical care has become a privilege that costs me more than $1,200 a month. In the last year, I spent roughly $73,000 on my health care—more than double my annual income when I was healthy and working full-time.

Historically, the National Institutes of Health (NIH), has allotted only a paltry amount of attention and funding—$6 million—to ME research. Some headway has been made in recent years, at least in part because advocacy through the #MillionsMissing campaign has brought the lack of funding to legislators’ attention. In November 2016, the NIH tentatively announced plans to increase research funding for ME to roughly $15 million for fiscal year 2017. But now, with Republicans controlling both Congress and the White House, there has been a change in what was promised. In January the NIH said it will actually decrease funding, allotting $1 million less than in 2016.

The amount is minuscule compared to the funds that the government has at its disposal. The ME community has needed a substantial increase in government funding for decades. More funding would mean more research; more research would mean more biomarkers; and more biomarkers would mean the potential for a diagnostic test. These scientific breakthroughs would mean medical professionals would be able to better understand the disease—and therein lies the solution. This path has potential for the medical establishment and government to compensate for decades of belittling patients who suffer from a devastating disease, finally bringing widespread legitimacy to ME—and relief to millions of patients. That would be real progress.

But it may never happen at all.

Before Donald Trump shocked the world by winning the election, I was hopeful that the Affordable Care Act (ACA) would, in time, be expanded so that more of my medical needs would be covered by insurance. But now, barring a radical turn of events, that seems—at best—highly unlikely.

If the Trump Administration repeals the ACA, even simple treatments—like saline infusions and in-home nurse and doctor visits—will cost egregious amounts of money. My savings account has been zeroed-out, and I receive less than $900 in monthly disability checks. For the past year, my medical expenses alone have been more than $6,000 a month.

The plans that have been floated to replace the ACA do little for people with disabilities or low incomes. A replacement would likely offer a flat credit based on age, and it wouldn’t cover the care I need.  It would also dramatically weaken Medicaid, decimating services for people with disabilities and serious illnesses.

It would be unfair to say that the ACA has no room for improvement. But for me—and I imagine for most poor, chronically ill people—it is something to build on, not something to dismantle.

Because what happens next, for us, could be a matter of life or death.

Ten years ago, before the Affordable Care Act was passed, I became a 26-year-old widow with a 2-year-old child.

I want to tell you about how health insurance changes lives—how it can save them, and what is lost when it fails.

My late husband Bob and I met when I was only 13. Bob was a wise old man of 15. Everyone liked him—he was the kind of person who made other people feel good about the world and about themselves. I liked him right away, and we started dating after he asked me to go to a dance. We were the rare high school sweethearts who maintained a relationship through college, even though Bob was two years ahead of me in school.

Get TalkPoverty In Your Inbox

Bob was a musician and an educator. He earned a Master’s degree in music, and performed in St. Louis and towns all over the Midwest. His income from those gigs was a very significant part of our household budget. He taught at jazz camps for kids, and as an adjunct faculty at various local colleges. Bob loved teaching. A lot of people teach because it’s a reliable source of income to support their passion for performance, but Bob taught because he loved being with students. He was incredibly methodical and organized in his approach to teaching. Many of his friends and former students are still teaching music today using his methods and materials at various institutions in and around my hometown of St. Louis.

Bob was also a gifted composer, because he had worked hard to learn theory and technique until they obeyed the commands of his heart. He spoke the language of music far more eloquently than most of us ever speak with words. I didn’t recognize Bob’s gift when he was living as well as I do now. After he released a CD in 2004, the American Society of Composers, Authors and Publishers (ASCAP) selected him to receive a Young Jazz Composer’s Award for one of his songs, “Nola’s Waltz.” As my own musical understanding grows, I hear more and more of what he had to say and how beautifully he told his stories.

He was certainly living the dream in those years—from 1997, when his musical career started, until 2007, when it abruptly came to an end.

What happened?

When he was 25, Bob started having stomach aches. We were married, expecting a child, and working ten jobs between the two of us. I had three jobs and was a full-time student, and Bob taught at six different places in addition to his performance gigs. None of these jobs had paid sick days, so when Bob had stomach pains, he just went to work anyway.

Health insurance was always a problem for us. We purchased it through our college when we were students, but when Bob graduated and we tried to find our own insurance most companies rejected us because Bob was overweight and had a pre-existing condition: he had taken medication for acne when he was in high school. We were able to purchase a catastrophic insurance policy, but it had a deductible of $5,000 and cost us a little less than that each year in premiums.

About 20 percent of our income at that time was going toward medical expenses. We were racking up debt, and paying quite a bit of interest on it. In hindsight, we probably restricted our access to care. Just paying the premiums was enough of a financial burden—we did not want to add to it with copays.

Bob’s stomach aches got gradually worse over time, until he finally went to the ER. We both thought he was having a heart attack, because he was so sweaty and clammy and in so much pain. He was diagnosed with gallbladder problems, and we were relieved that it wasn’t something worse.

In a follow-up visit to the doctor, Bob was told that he didn’t have to do anything until the pain was bad enough to warrant having his gallbladder removed. So Bob muscled his way through the attacks, even when they were so bad that he was literally crawling in pain. It was very frustrating for me as his wife. I was angry with him because he refused to go to the doctor and get his surgery to get that gallbladder out.

Starting in the 2006-2007 school year, Bob was hired as a full-time faculty member of Southwestern Illinois College (SWIC). We had employer-based health coverage for the first time, and he was not about to risk losing that right when we got it by calling in sick for a few weeks. He was determined to stick it out until the end of that school year to do the right thing for his job—and his wife and son.

On March 22, 2007, Bob called me at home and told me that he was having an attack at work and that I needed to come get him and take him to the hospital. I drove him to the ER with our 2-year-old in tow, and the three of us spent the entire night in a hallway in the hospital basement. Bob was delirious from pain and sedation. He had acute pancreatitis, which was caused by a gallstone that had escaped his gallbladder and lodged itself in his pancreas.

Bob spent three weeks in the ICU at that hospital, was airlifted to a bigger hospital, and spent another three weeks in the ICU there.  His last words to me were all confusion about why he was in the hospital and why no one would let him go home. He just wanted to see his son.

In the middle of the night on May 3, a nurse called to tell me that Bob had taken a turn for the worse. I called his friends and family, and we sat vigil for him in the waiting room. There were probably 30 of us there when a nurse told me he was the sickest person in the hospital.

His death came at the end of a desperate, gory fight to save him. If you’ve never watched someone die of sepsis, I hope you stay that way.

Bob’s funeral was attended by at least 600 people. It was beautiful. People came together to express their grief by supporting his family. I was amazed at how caring people can be. I also barely remember it, because I slept so little in those days. Bob’s death left me adrift as a 26-year-old widow and single mother with few job prospects. I was still in the middle of my own education when he died.

Things worked out far better for me than they do for most people in my position, thanks to Bob’s life insurance, health insurance, and Social Security. Since Bob was covered by his employer’s health insurance, the medical bills that packed my mailbox for months after his death—I lost track of the total after it topped a quarter of a million dollars—were covered. They didn’t force me into bankruptcy, so I was able to rebuild our life. I spent countless nights grieving alone and struggling to work around the hole in my heart, and I spent my days going to school and raising our son, Bobby. I earned a Master’s Degree in Art Therapy Counseling, and provided more than 1,400 hours of services to others as part of earning that degree. I remarried in 2011.

It all could have gone very differently if the laws in our country had been on a slightly different timeline. If the ACA had passed in 2004 instead of 2009, Bob and I would have had coverage we weren’t afraid to use. Bob would have been covered by his parents’ insurance until only two months before his employer-based coverage began. He could’ve had his gallbladder taken out months before it killed him.

If the ACA is repealed—if we no longer prevent insurance companies from excluding people based on pre-existing conditions like teenage acne, or no longer require insurance companies to cover young adults when they may not yet work the kinds of jobs that provide health insurance—then there will be many more stories like Bob’s. There will be many more incandescent American lives that flicker out.

If we lose these provisions, my own experiences will inform the health care I’m willing to procure for my children. Perhaps I’ll decide that it’s better to leave my children’s allergies and minor illnesses and acne untreated, knowing that a diagnosis as a child could prevent them from being able to access more important health care as an adult.

Is that really the best we have to offer our children?

I know the ACA isn’t perfect—our employer-based coverage premiums and copays have gone up. Insurance policies change too often. But at least we have coverage, and under the current law we aren’t afraid we will lose it if we use it.

That is worth protecting. Find a way to do it.

More than 22 million uninsured people gained health coverage, resulting in the lowest uninsured rate in U.S. history. People with pre-existing health conditions can no longer be denied coverage by insurance companies. Annual and lifetime caps in insurance payouts are barred, thereby protecting people with major illnesses and accidents. Health care coverage must be comprehensive—it cannot be filled with holes. Women can no longer be discriminated against in premium costs. Young adults can stay on their parents’ insurance plans until their 26th birthday. Preventive care is provided at no cost.

Get TalkPoverty In Your Inbox

These changes have made a huge difference in the lives of millions of people. Because of the Affordable Care Act (ACA), all Americans are far less likely to go bankrupt after a major accident, or be penalized for chronic conditions, or have a minor illness spiral into a serious medical problem. There has also been remarkable progress in extending coverage to low- and moderate-income families and individuals.

To be sure, the new law is far from perfect. There are still millions of people who don’t have health coverage, in part because 19 states have refused to expand Medicaid. In the individual private insurance marketplace, fewer insurers are selling coverage and premiums are rising at unacceptable rates. High-quality care still has too high of a price tag. But the ACA established a strong foundation that we can build on.

Unfortunately, the progress we have made may soon be reversed. President-elect Trump and congressional Republicans are determined to repeal the law. They also want to convert the Medicaid program—which currently serves more than 73 million low-income people—into a block grant with significantly diminished funding. These changes to Medicaid would kick people off of the program, reduce its coverage, and lead to deductibles and co-payments that recipients cannot afford.

For nearly seven years, we have heard from conservatives that they will repeal and replace the ACA. While congressional Republicans now have a clear plan to repeal the law—in short, to repeal it in early 2017 but delay implementation so that people don’t start losing their insurance until after the 2018 midterms—they have not put forward a unified proposal on what to replace it with. That means when they vote to repeal the bill, they will have no idea what the changed health care system will ultimately look like.

If Congress moves forwards with this half-baked plan, an estimated 30 million people will lose health coverage, while the wealthy receive massive tax breaks. That would more than double the uninsured rate, and flip the country from having its lowest uninsured rate in history to its highest in decades. Eighty-two percent of the people who will lose coverage are in working families, and four out of five don’t have college degrees. These numbers will be even higher if the ACA repeal is combined with the proposed restructuring of Medicaid.

The net result is a lose-lose-lose-lose proposition. Millions of Americans would be priced out of the care they need. Many hospitals, especially those in rural and low-income communities, will need to close because they cannot afford to care for uninsured patients. And the health care sector will face enormous job losses, which would have a major ripple effect throughout the economy. Finally, states would not only lose significant federal revenues, they would face an increase in expenditures to help pay for some care for the newly uninsured.

A new coalition, “Protect Our Care,” is focused on helping the public understand the harmful consequences we would face if the ACA is repealed and Medicaid is gutted. The coalition aims to ensure that its education and mobilization effort effectively reaches the public, opinion leaders, and policymakers before it is too late.

It behooves people of good will, from both political parties, to work together to ensure that we continue to improve our health care system—not take large steps backwards that would create chaos.

Editor’s note: TalkPoverty presents this series in collaboration with the Georgetown Center on Poverty and Inequality.

If you were wondering whether Donald Trump would keep his promise to protect Medicare from cuts, you just got your answer. Trump’s choice for Secretary of Health and Human Services is none other than Rep. Tom Price (R-GA), one of the country’s leading advocates for turning Medicare upside down.

Over the course of his campaign, Donald Trump assured voters that he would not take an ax to Medicare. In May of last year, he made that particularly clear when he told the Daily Signal, “I’m not going to cut Social Security like every other Republican and I’m not going to cut Medicare or Medicaid.” That fits in well with Trump’s allegedly populist campaign message—in fact, it would fit even better if he pledged to expand Medicare and other social safety net programs.

Get TalkPoverty In Your Inbox

But with the election just three weeks in the rearview mirror, Trump is already wrapping his arms around various proposals to gut the social safety net that conservatives have long advocated for—including schemes to weaken Medicare. Price’s appointment is just the latest signal that the incoming administration is willing to put seniors’ health care on the chopping block.

Price has spent his career attacking Medicare. In 2009, he marked Medicare’s 44th anniversary by bashing it. “Nothing has had a greater negative effect on the delivery of health care than the federal government’s intrusion into medicine through Medicare,” Price wrote. Two years later, Price introduced a bill to shift more Medicare costs onto seniors by partially privatizing the program.

After Trump’s election, Price said that he hoped to have a Medicare overhaul “within the first six to eight months” of the Trump administration. He’s planning on using a process called budget reconciliation—which would allow conservatives to push through major policy changes without needing to secure a filibuster-proof, 60-vote majority in the Senate.

Privatizing Medicare has been on conservatives’ wish list for years—Speaker Ryan advocated for it as a way to cut the program’s costs as early as 2010. In a budget proposal that year, Ryan pushed the idea of “premium support,” which would effectively swap out the current Medicare system—where the government pays hospitals, doctors, and other healthcare providers—for one where every person essentially gets a check to buy their own insurance on a private market. Effectively, the plan takes power away from Medicare enrollees and puts it squarely into the hands of private insurers. Ryan’s most recent version of the plan would not eliminate traditional Medicare right away, but it would undermine the program and raise the eligibility age.

The devil is, as always, in the details, and so far Price and Ryan have declined to specify exactly what their Medicare overhaul would entail. But the consequences are potentially very grave: previous proposals would hollow out the current program and replace it with one that covers fewer people, offers its enrollees fewer benefits, and opens the door to charging much higher premiums to seniors facing the most significant challenges to their health.

Despite his campaign promises, it seems Trump is now falling in line . Price’s appointment follows a statement the president-elect put out on his transition website, where he pledges to “modernize Medicare, so that it will be ready for the challenges with the coming retirement of the Baby Boom generation—and beyond.” In the world of political parlance—especially after an election where Trump made a number of explicit attacks against many groups of Americans—this may not sound like much. But in fact, this phrasing strongly suggests that Trump is getting ready to join conservatives’ long-running effort to gut Medicare as we know it.

This is what makes Trump’s pivot on Medicare so disconcerting: It appears to be yet another example of how the populist rejection of establishment politics that defined his campaign’s narrative was just a ruse. Another broken promise originally made in bad faith.

My late grandfather, a New Deal Democrat who proudly cast his first vote for Franklin Delano Roosevelt’s third term in 1940, taught me many things: The airy pleasure of crooners Bing Crosby and Perry Como, how to handicap a horse race, the importance of being on time. (Incidentally, I’m still working on that last one.)

One lesson in particular is sticking out as we get more information on President-elect Trump’s plans for office. It went something like, “A person breaks a promise every single minute. If they’re acting in good faith, you give ‘em another chance. But if you know they aren’t, just go ahead and throw the first punch.”

If there’s a silver lining, it’s that the American people appear to be ready to throw a punch. They happen to like their Medicare the way it is, and fiercely oppose turning it into a premium support-based system. According to a June 2015 poll, only 26% of respondents support transitioning Medicare to a premium support model. In contrast, an overwhelming 70% of respondents said they preferred keeping Medicare structurally as it is.

There is no doubt Donald Trump was wise to the popularity of Medicare when he promised not to cut it a year and a half ago. Now that he seems likely to join in Speaker Ryan’s barrage of attacks on the social safety net, he may be surprised by how his supporters respond.