My husband, on the other hand, was never referred to as an addict, even though he was actually being accused of using one more illicit substance than me — methamphetamine in addition to heroin. It may be hard to understand why something like this matters. After all, don’t people use the word “addict” all the time?

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There is an ongoing debate among the addiction treatment and harm reduction communities about which terms should be used when referring to drug use and addiction, and in what settings. In 2017, the Associated Press Stylebook updated their recommendations for reporting on addiction and drug use to exclude potentially stigmatizing terms such as “addict,” “alcoholic,” and “drug abuser,” except in the form of direct quotes. Instead, they recommend using person-first language, such as “person with a substance use disorder” or “people who are addicted to opioids.” These changes aligned with updates to the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, as well as recommendations by the Office of National Drug Control Policy.

Others followed suit: a 2018 update to the National Institute on Drug Abuse’s blog specified that they no longer use terms such as “addict” or “substance abuser” (though the institute’s name remains unchanged), and in 2020 dictionary.com updated their website to replace all uses of the word “addict” as a noun with terminology such as “person with an addiction” or “habitual user.” They also updated their definition of the word “addict” to note that some might consider it offensive, and added a lengthy sensitivity note explaining: “addiction is the complicated result of genetic predisposition intersecting with dysfunctional behavior, neurochemical modification, environmental factors, and social influences,” and that many members of the treatment and recovery communities advocate against its use.

Controversy around terms such as “addict,” “alcoholic,” and “substance abuse” has been boiling for years. Many members of the medical, recovery, and harm reduction communities are happy to see changes like this implemented. For example, Olivia Pennelle, founder of Liv’s Recovery Kitchen and a journalist in long-term addiction recovery who covered the language debate for The Fix in 2018, said the dictionary.com changes are “important,” adding: “Only 10 percent of people [with a substance use disorder] get access to treatment…[and] a major factor is stigma. If we can do anything to change that, we should.”

On the other hand, Amy Dresner, also a journalist in long-term addiction recovery who authored an autobiography titled My Fair Junkie: A Memoir of Getting Dirty and Staying Clean, said she considers the use of language such as “junkie” and “addict” to be empowering when reclaimed as self-identifiers. And she says terms such as “person with a substance use disorder” fail to “convey the horror” of what she experienced during her active addiction.

“All that PC language feels like putting lipstick on a pig and hiding it more…[the changed terminology] sounds better, it sounds like you have empathy but does it really change somebody’s opinion?” she asked.

Recent research backs the moves by dictionary.com and the Associated Press. A series of studies published in the Journal of Drug and Alcohol Dependence in 2018 found that several terms, including the word “addict,” were associated with negative social perceptions. It also found that these terms produced negative biases significant enough to impact people’s access to healthcare; for example, both treatment professionals and members of the general public were more inclined to recommend incarceration or other punitive measures to those labeled an “addict” or “substance abuser” while a “person with a substance use disorder” was more likely to be deemed in need of medical care.

Robert Ashford, the lead researcher in the language studies, explained a potential cause in a story I wrote for Filter Mag. “[Language is] the primary way we communicate…The cliché ‘words have power’ is the truth.” Regarding language employed in court settings specifically, he added: “It’s not that those [terms such as ‘person with substance use disorder’] are inherently positive; it’s that they are less negative than the pejorative terms that have been created over time. These things have a really strong emotional reaction to most people. We don’t need to do [courtroom actors] any favors by…using language that has come to mean something biased.”

“How you speak about the person you’re representing is how other people will see them and so using the correct language is extremely important,” added Dinah Ortiz, a harm reduction-oriented parent advocate located in New York City. “Language is like a stepping stone, then comes the harder stuff, but it starts with language…if we don’t care about calling a person a ‘junkie,’ a ‘dope fiend,’ a ‘crackhead,’ then we don’t care about that person.”

In my Florida State child services case, my husband and I both received the same charges — neglect and imminent risk of harm — and we both had our parental rights terminated in early 2020. On paper, we shared the same nightmare outcome at the end of a case riddled with misrepresentations of fact, blatant bias, and government overreach at its darkest. But there was a palpable difference in the courtroom between his treatment and mine. While my every word was interrogated with suspicion — I was never even counted as having income despite clearly being able to pay my bills and child support — my husband was rarely questioned. I was criticized for circumstances he and I shared, such as not having a car and relying on his parents for rides to our supervised visits, while he usually escaped mention.

At the disposition for our initial trial, when the judge determined that our daughters were unsafe in our care and should remain with their paternal grandparents while we completed a slew of tasks to try to regain custody, the judge cited as her reasons for issuing these charges against me: “The mother is an extraordinarily educated and gifted individual. You have a gift for language, both oral and written. Unfortunately, the Court finds that you could probably sell ice to an Eskimo.”

Although she issued the same charges against my husband, the judge stated that she “found the father’s testimony essentially credible before this Court,” and mentioned that he acknowledged having a “substance abuse history,” something I likewise acknowledged about myself (though I clarified it as a substance use disorder, as per the DSM IV and V).

While it is impossible to pinpoint my classification as an “addict” versus my husband’s as a “person who uses heroin and meth” as the reason for our differences in courtroom treatment, it can’t be ignored that this experience aligns near perfectly with the outcomes of Ashford’s experiments.

And, as explained by Sheila Vakharia, a former social worker and the current deputy director of the Department of Research and Academic Engagement for the Drug Policy Alliance: “When you refer to someone as an ‘addict,’ and you make salient one person’s single relationship with a drug or several drugs, what happens is you then start to see that person through that lens of that one characteristic or trait, and it can make it hard to see the complexity of a person’s identity.”

Still, it’s hard to know how much, if at all, my case would have changed if I’d not been labeled an “addict” at the outset. Would my daughters be home today? Or would I merely have had a slightly more comfortable courtroom hanging?

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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.”

He would eventually learn that he had overdosed while using heroin, possibly laced with fentanyl, with a couple of guys who he met during his recent stint in jail. A few days later, Derbyshire woke up withdrawing and confused again. This time, he was in the bathroom of a Wal-Mart, and he had been revived by paramedics — which meant he had to run, because if the police took down his information, he would probably go right back to jail for violating the terms of his release.

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The two overdoses took place within days of each other in early April 2018, both less than two weeks after his release from Atlantic County Jail in New Jersey. Derbyshire, a 40-year-old tile setter with a history of opioid addiction, had been picked up for a bench warrant and a probation violation related to drug use.

He spent two months inside, during which he was involuntarily detoxed from opioids. He described the jail’s withdrawal protocol as two daily cups of a sports drink while being held on 23-hour lock down in a cell with two other men. Every other day or so, someone would check his vitals, and that was it. No methadone, no follow-up care after his release. And Derbyshire isn’t unique. In his case, he was not able to get methadone because he had not been incarcerated enough — one of many requirements at his facility’s program.

David Kelsey, the Atlantic County Jail warden, commented that “since its inception [the methadone treatment program] has provided services and referred to treatment eight hundred individuals.” In most other facilities, evidence-based treatment is not offered to anyone. But unlike Derbyshire, many of those who overdose after release don’t get up again.

As the nation struggles to slow the spread of the novel coronavirus, jails and prisons are beginning to release groups of people who are deemed safe for community return. Detention facilities in the United States are notoriously overcrowded, making them transmission hotbeds should the virus find a way in. Already, staff and inmates have tested positive in facilities in Florida, New York, and other places around the nation. California recently announced plans to release 3,500 people from state prisons, and New York City has already released 900. Montgomery County, Alabama, released over 300 people. The majority of people being identified for early release are those who have been accused or charged with non-violent offenses, many of which involve drugs.

A study out of Washington State found that in the first two weeks post-release, the relative risk of fatal overdose among former inmates was 129 times higher than the general population. A longitudinal study out of North Carolina found the risk of fatal overdose was 40 times higher than the general population in the first two weeks after release; for heroin users specifically, the risk was 74 times higher. And a 2019 article published in the journal of Addiction Science and Clinical Practice named post-release opioid-related overdose the “leading cause of death among people released from jails or prisons.”

The reasons behind this dramatic rise in risk are complex. The most obvious factor is that when people are forcibly detoxed from opioids but not provided adequate treatment for the underlying addiction, they return to their communities with significantly decreased tolerance but no more tools to help them deal with cravings than they had when they went in.

“They’re not cured, they’re not treated, they’re not in recovery, they just haven’t been able to use,” said Lipi Roy, a clinical assistant professor at NYU Grossman School of Medicine and an internal medicine physician who specializes in addiction. “Whether [the period of incarceration] be three months or three years, it doesn’t matter … The brain doesn’t forget.”

But new research suggests it’s not just a matter of simple tolerance. The unique social, environmental, and psychological factors faced by people who were recently released from incarceration also contribute to the enormous elevation in overdose risk. Now more than ever, as community supports shutter or limit their services in response to the pandemic and people are urged to stay home, those being released from incarceration are entering a new world filled with more stress and less stability and support than ever before.

“Decarceration without re-entry support systems is only going to be a halfway measure,” said Sheila Vakharia, the deputy director of research and academic engagement at the Drug Policy Alliance. “You can’t let people walk out the doors and assume they will be safer outside than inside.”

“If you think of a person in this situation, they may not have a place to live or the same social networks as when they went in. They might be more worried than usual of being arrested so they may be more likely to inject in hidden places and alone and to rush the shot,” said Megan Reed, a PhD candidate at Drexel University’s school of public health and the principal investigator in an NIH funded study on overdose risk after release. “Very few of the harms we associate with drug use have to do with the drug itself or the actual drug impact on the body; it’s the conditions in which somebody is using.”

Incarceration is a highly destabilizing experience that carries a host of other potential negative outcomes. While incarcerated, people are at risk of losing employment, housing, and even custody of their children, especially during long periods of detainment. Furthermore, the stigma associated with arrest and incarceration, or simply the difficulty and expense of communicating with the outside world while behind bars, can disrupt important familial and social relationships, leaving people with a smaller and weakened support system upon release.

Reed also pointed out that many people who have criminal justice involvement enter the system at heightened risk of fatal overdose. For example, people experiencing homelessness are at both heightened risk of overdose and incarceration. Rates of HIV and mental illness — both independent risk factors for fatal overdose — are also high in detention facilities. Many of these are also thought to be risk factors for severe cases of COVID-19, adding an extra source of anxiety for vulnerable people during the outbreak.

This pre-arrest susceptibility combined with decreased tolerance and the stress and uncertainty that people are facing after they have been released from jail or prison creates a perfect storm of dangerous vulnerabilities. “You have concentrations of other overdose risk factors already inside, and the communities that people are returning to are the same communities that are most impacted in the first place,” said Reed.

Exacerbating all of this is a lack of access to the most effective treatments for addiction to opioids, methadone and buprenorphine. Both are opioid-agonist medicines that reduce craving and withdrawal by filling the same receptors as short-acting opioids like heroin, but without delivering a euphoric high in patients who are properly maintained. They are both approved by a slew of licensing bodies, including the World Health Organization, which has included them on the list of essential medicines because of their proven efficacy in treating opioid use disorder and reducing harmful consequences of use, such as fatal overdose. Unfortunately, the majority of detention facilities in the United States do not offer these medications to inmates who are not pregnant.

“Because most correctional facilities still don’t offer standard of care treatment for opioid use disorder with methadone or buprenorphine, people are released not on treatment back to the community. Unsurprisingly, recurrence rates for opioid use are high and because people’s tolerance is reduced their risk of overdose increases dramatically,” said Sarah Wakeman, medical director of the Substance Use Disorders Initiative at Massachusetts General Hospital and an assistant professor of medicine at Harvard University.

The federal government recently loosened regulations around the prescribing of methadone and buprenorphine during the pandemic, but did not address access to people who are currently incarcerated.

Research has shown that maintaining people on medications for opioid use disorder while incarcerated and providing low-barrier referrals upon release will dramatically reduce the post-incarceration overdose rate. Wakeman and other experts also suggest dispensing naloxone, the drug that can reverse an opioid overdose, to people who are being released back into the community.

Spurred by lawsuits and activism, an increasing number of facilities are beginning to offer access to these medicines, but the majority of detention centers remain reticent. This is unlikely to change without a major shift in the way the criminal justice system views and handles drug use and addiction.

“Our justice system is the biggest houser of people with substance use disorders and mental health disorders in this country,” said Vakharia. “[But] they weren’t built for this…they were built to house the ‘bad guys’ in the most simple understanding of how that works and what that means. They were never built or staffed to think of the long term, nuanced needs of people with these multifaceted challenges.”

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.

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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.

The bill seeks to make three major changes: It would define illicit drug use during pregnancy as child abuse regardless of actual harm to the infant; remove the state’s obligation to engage in family reunification efforts when a child was exposed to drugs; and significantly shorten the amount of time it takes to begin terminating parental rights.

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Although the bill’s stated purpose is the protection of infants, opponents say it does the exact opposite: Separating infants from their parents causes potentially irreversible trauma to a child’s brain. In addition, this type of bill deters pregnant drug users from seeking much-needed medical care for fear of punishment, and denies families the resources to heal from addiction and parent their children to their best capacities.

The North Carolina Urban Survivor’s Union, a harm reduction organization dedicated to protecting the rights of drug users in North Carolina, is doing everything they can to stop this bill from becoming law. They are reaching out to senators, gathering signatories on a letter of opposition (which I joined), and preparing to implore the governor to veto it, failing efforts to stop it from passing. To them and many other harm reduction and reproductive rights advocates, this bill represents a growing national trend to use fear-mongering as a basis for stripping pregnant people of crucial rights, even well beyond pregnancy.

Aly Peeler, advocacy coordinator for the North Carolina Urban Survivor’s Union, notes that although the bill is written to target drug users, it has the potential to affect a much larger population: “It opens the door for prosecuting people who can get pregnant for anything that can harm a fetus. What if you’re not exercising enough, what if you don’t have healthcare when we know that prenatal care is the biggest determinant of fetal health? We are really invested in stopping the bill.”

Allowing the state to define in utero substance exposure as child neglect would permit child services to remove newborn infants from their parents’ custody at birth. Should this pass, North Carolina would join 23 other states in defining prenatal substance exposure as civil child maltreatment. This has a ripple effect: A recent study from the RAND corporation discovered that areas with punitive policies toward drug use during pregnancy, such as conflating it with civil or criminal child maltreatment, saw higher rates of infant withdrawal. Patients who fear being punished for using drugs avoid medical care, whether that means continuing to use drugs instead of engaging in treatment, or avoiding prenatal care altogether.

It is a measure that invites a host of problems, including the traumatic interruption of the dyad between a birthing parent and newborn. Contact between newborns and the parent who birthed them is crucial during the first days of life; this is especially true for infants who experience withdrawal from substances they were exposed to during pregnancy, whether or not those substances were prescribed and taken as recommended. Nursing and skin-to-skin contact have been shown to reduce symptoms of neonatal abstinence syndrome (NAS), or infant withdrawal.

Many hospitals around the country have begun to change their NAS protocols to be more inclusive of families, implementing “mother as medicine” approaches to treating withdrawal symptoms that have led to dramatic decreases in the amount of time infants diagnosed with NAS require medical intervention. The University of North Carolina Children’s Hospital-Chapel Hill recently implemented a new approach to treating NAS called “Eat, Sleep, Console,” which heavily integrates familial support as part of the treatment for infant opioid withdrawal. House Bill 918, however, would undermine that medicine by denying parents access to their newborns, potentially even while the baby is still in the hospital, despite the new protocol’s positive outcomes.

The absolutist attitude toward drug addiction appears to favor stigma over science. It states that in order for a substance exposure-based neglect charge to be substantiated, child services must be able to demonstrate that the parent is “unable to discharge parental responsibilities due to a history of chronic drug abuse.” This would allow a parent’s history of addiction to be weaponized against them, something which is generally not done with other medical conditions unless there is a similar element of stigma involved, such as that which is seen in some cases of intellectual or physical disabilities.

It also opens the door to using addiction treatment history as evidence of an inability to parent. Addiction is defined as a chronic relapsing disorder. It is not uncommon for patients to attend more than one treatment program before achieving long-term remission, or to require long-term medication management with methadone or buprenorphine in the case of opioid addiction. When these histories become confused with the definition of parental fitness, it labels people with substance use disorders as undeserving to parent simply because of their condition.

In an interview for a story published by The Appeal, obstetrician and addiction medicine physician Mishka Terplan described recovery as “finding community connection, purpose, and meaning…Motherhood fits right into that, and yet we have this system that has labeled certain people and populations as being less deserving of that than others, so we are going to even take that away from them, or make it yet another battle in a grossly unfair universe.”

Stating that child services is not required to engage in reunification efforts further codifies this dismissive attitude toward people with substance use disorders. Normally, when a child welfare department opens a case on a parent that involves the removal of a child from the home, the department is required to pursue reunification efforts before moving to forcibly adopt the child to another family.

This means that the department has an obligation to provide referrals and financial assistance for any services the parent is required to complete in order to regain custody. In cases that involve parental drug use, this typically means that the child welfare department must provide timely and appropriate referrals for addiction treatment, and often must also cover the costs of such treatment. But North Carolina’s new bill would remove this burden from the state in cases that involve “exposure to nonmedical substances in utero.”

“[A pregnant person with an untreated substance use disorder] can’t stop using [solely due to pregnancy] because that’s one of the defining features of having a use disorder, and people with a use disorder — they need treatment,” said Terplan, describing with eloquent simplicity the inherent injustice of removing a child due to parental drug addiction, then refusing to provide treatment.

Amber Khan, a senior staff attorney at National Advocates for Pregnant Women (NAPW), has helped oppose bills like this in the past, like a 2017 bill that made substance use during pregnancy civil child neglect in Kentucky and forced mothers to enroll in drug treatment within 90 days of giving birth or face termination of parental rights. Khan said these bills “are counter-intuitive and dangerous and based on misinformation. They certainly do not address a substance use disorder. If the concern is a parent’s substance use disorder, these bills create a punitive system but don’t increase funding for care.”

Finally, North Carolina’s bill also decreases the amount of time it takes to permanently separate parent and child by terminating parental rights, an act that has been dubbed the “civil death penalty.” Currently, federal legislation known as the Adoption and Safe Families Act (ASFA) requires states to file for termination of parental rights when a child has been in foster care for 15 of the past 22 months (it does not necessarily apply in situations of kinship care, when children are living with relatives). Some states have opted to shorten that time, and if HB 918 passes, North Carolina will join them. The bill will shorten the requirement to one year. It also gives foster parents the same rights as relatives, allowing them to petition for custody after only nine months.

“People don’t understand substance use,” said Louise Vincent, the executive director of the North Carolina Urban Survivor’s Union. “I find bills like this really manipulative…You start talking about pregnant women using drugs and people lose their mind. People don’t understand that love doesn’t cure addiction.”

Compounding all of this is the fact that these issues will not be faced by all populations equally. In North Carolina, for example, Black children comprise 33 percent of the foster care population, but only 23 percent of the state’s total population. This law would give the system further leeway to discriminate by race and class, issues already embedded into the child welfare system.

“We know that poor women and women of color are more likely to be suspected of drug use, so they’re more likely to be screened and more likely to be reported,” said Peeler. “The bill is really worrying partially because everyone really values trusting and confidentiality with their doctors and it wouldn’t afford that to people who can get pregnant.”

When legislation perpetuates the idea that addiction can be a chronic relapsing medical condition up until the point of pregnancy — when it becomes a moral failing and representative of a lack of appropriate maternal love — it fails to protect the community, which should be the basic function of the law. HB 918 and other similar laws defy science in favor of stigma and move the government one step closer to repealing reproductive agency in the United States. And, of course, it creates a new avenue for punishing drug users even while the criminal justice system finally, albeit slowly, begins to recognize that punitive measures are ineffective against addiction.

“This is certainly another part of the business as usual for the drug war,” emphasized Vincent.

I was biking to treatment three to five days a week in the Florida heat, and had no other transportation, so I wasn’t able to come in for dosing after I came down with a fever and a deep, phlegmatic cough. But I called in, emailed, and texted each day that I missed a scheduled day of treatment. At no point was I warned of an impending discharge; my counselor simply wished me well, and suggested I go to urgent care if I felt I needed it.

When I returned to treatment the next week, though, I learned that my provider, Memorial Outpatient Behavioral Health, had assumed I was skipping to use drugs. They dumped me without even a few days’ supply of my prescribed buprenorphine, upon which my body was physically dependent; a referral elsewhere; or a solid reason.

This was in spite of my having an active prescription from my doctor and a future appointment with her. I could also no longer access the psychiatric medication I was prescribed through the same provider.

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All of a sudden, without warning, I lost all of my addiction and mental health care. As shocking as these events have been, they are not uncommon. In fact, they represent a dangerous status quo among opioid addiction treatment providers across the nation, one that defies all modern research on addiction treatment and leaves patients stranded.

“It’s an old school type of thinking which came out of how we’ve treated addiction in the past, which is that abstinence is the policy, which doesn’t make sense with a chronic relapsing disease,” said Justine Waldman, the medical director for REACH, a harm-reduction oriented health hub in Ithaca, New York. “With abstinence being the policy, once the patient isn’t able to follow the policy the patient isn’t able to be part of the practice.”

Keri Ballweber, a methadone patient and recovery specialist at Point to Point Kane County, remembers being dramatically dropped from care in 2012 by Family Guidance Center, a methadone provider in Aurora, Illinois with whom she had been a patient for roughly six and a half years. In the two years prior to her discharge, she had been gradually tapering her 160 mg dose with the goal of coming fully off methadone.

“As I got lower in my taper, it began getting harder and harder to deal with the symptoms [of withdrawal],” recalled Ballweber. “I asked them for help, but their only suggestion was to go slower. It did not seem as if there was a speed slow enough to not cause me discomfort.” Family Guidance Center declined to comment for this piece; Memorial Outpatient Behavioral Health said it does not comment on specific cases, but that “our goal is to partner with all our patients and help them heal and recover.”

Ballweber eventually turned to illegally purchased diazepam, a benzodiazepine usually prescribed for anxiety, insomnia, and seizure disorders. Mixing benzos and opioids can be dangerous, but when Ballweber disclosed the use to her counselor, she was not informed about this, nor given any harm reduction tips. She asked if she could be kicked out of the program if she continued to screen positive for the non-prescribed drug, and her counselor admitted that outcome was possible, but assured her that such a drastic action would only be taken much further down the line.

The next month, Ballweber was dismissed, and tapered from her dose within a week.

“I was very sick,” said Ballweber. “I couldn’t sleep, I was having panic attacks, muscle tremors, [and] restless leg syndrome.” Eventually, she began to experience hallucinations, which she believes were the result of sleep deprivation from the withdrawal. She was admitted to the hospital for psychosis and prescribed quetapine, an anti-psychotic medication, which helped her sleep. “I had absolutely no aftercare and cutting me off from the clinic [also] cut me off from counseling,” she said.

Ballweber also recalls seeing other patients discharged or punished with medication holds for talking back to their counselors or smoking too close to the buildings. Other MAT patients around the country have reported being dropped or threatened with dismissal for reasons such as relapsing, missing care for unavoidable reasons like being incarcerated, not attending group therapy sessions, smoking marijuana, or being unable to pay.

In my case, when the clinic refused to give me my prescribed medication, leaving me in opioid withdrawal and overcome by a sense of deep confusion and hopelessness, I did eventually use. It was a bad choice, I admit that — and I told my counselor immediately. But in many ways, the clinic itself had contributed to the outcome it had initially accused me of.

I think a part of me hoped that if I gave them what they expected — a positive toxicology screen — I would get what I needed: ongoing care. Instead, I was totally shut out and sent to navigate detoxing from both my opioid-based buprenorphine and my selective serotonin reuptake inhibitor antidepressant (also dependency-producing) at home, alone, with no medical supervision or follow-up care.

Both buprenorphine and methadone are approved by a slew of licensing bodies, including the World Health Organization, as the most effective treatments for reducing harmful symptoms of opioid addiction and opioid addiction-related deaths. Although any addiction treatment plan should be tailored to the individual patient’s needs and circumstances, these medications are designed for long-term or even lifelong use, said Mary Jeanne Kreek, senior attending physician at Rockefeller University’s addictive diseases lab and part of the team that first developed methadone as a treatment for addiction, whom I interviewed while researching a story for Filter Mag. No part of best practice includes suddenly dropping patients from care for any reason — but especially not for showing symptoms of the disorder for which they are seeking care.

“I’m afraid for any patient who has to get off MAT before they’re ready,” added Kreek.

For patients who relapse, Waldman confirmed the best practice is to “keep the patient on buprenorphine.”

At REACH, she noted, patients are not expected to adhere to an abstinence-only model of care. When patients continue to relapse, their practitioners sit down and ask the patients what they need and how they can help.

“There have only been two patients that I can think of who weren’t able to get care at REACH,” she said, “and they were displaying more violent behavior that just didn’t feel safe within our workplace.” She makes a point to add that REACH ensured those patients were placed with a more appropriate provider.

Losing access to medication also affected my ongoing child services case, switching it from a reunification track to one in which my children will be given up for adoption due to an assumption by my caseworkers and my judge that I am at fault for “failing” treatment. This doesn’t guarantee that I will permanently lose my two young daughters, but it makes it a much tougher battle to win. Now, I am no longer entitled to the little assistance I was receiving from my local child welfare agency in obtaining the services I need to reunify with my daughters. They are oriented toward settling my daughters into permanency with their grandparents.

When I told my counselor that this would happen if they dropped me from care, she responded that she thought I should get my daughters back, and was probably a great mother, but was not a dedicated enough patient.

Mandy had tried methadone, another medication similar to buprenorphine, three times unsuccessfully, but was determined to maintain sobriety this time. When she learned that she was pregnant, using again became a “hard no.” She enrolled in a comprehensive, high-risk pregnancy program geared toward people in recovery from substance use disorders.

There, she learned that due to a Massachusetts state statute requiring hospitals to report any prenatal substance use, she would be subject to a child services case once she had given birth. But she was assured that as long as she remained compliant with treatment and continued to prioritize her health and pregnancy, the investigation would be brief and relatively unintrusive.

That’s not how it went, though. Instead, she was charged with neglect and a placed on a statewide child maltreatment registry that would limit her job options and even her ability to attend field trips with her child.

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Mandy was relatively lucky because she had the knowledge and resources to successfully appeal this decision, but many mothers who face similar circumstances are stuck living with the consequences of child welfare involvement simply for seeking treatment.

Media outlets have labeled the uptick in overdose deaths since 2015 the “opioid crisis,” and a rash of sensationalized stories — cops overdosing from contact with crime scenes, babies born “addicted” to drugs, drug dealers compared with serial killers — are fueling a public perception of drug users as a macabre and dangerous population.

The result? A crackdown on parents — especially mothers — who use drugs, with a hard target centered on those with a past or present addiction to opioids. State laws vary, but at least 23 states and the District of Columbia articulate that substance use during pregnancy is child abuse, and virtually every state in the U.S. will open an investigation (at the very least) into a person who tests positive for substances during or shortly after pregnancy.

According to research compiled by the Vanderbilt Center for Child Health Policy, the number of infants entering the foster care system rose by nearly 10,000 between 2011 and 2017, and at least half of those infant removals were due to parental substance use, often during pregnancy.

Not only can these types of punitive measures make pregnant people who use substances wary about seeking medical care, but applying personhood rights to the unborn is a dangerous precedent that criminalizes people for events outside of their control; for example, earlier this year in Alabama, Marshae Jones faced criminal charges for having a miscarriage after she was shot.

Women’s rights advocates continue to fight laws that pursue the rights of fetuses before those of the people who carry them, and have seen some wins — for example, the charges against Jones were ultimately dropped, and last year the Pennsylvania Supreme Court reversed a ruling against a mother who use opioids and marijuana while pregnant, stating that fetuses were not covered in their child maltreatment laws — but it remains an uphill battle around the nation.

At the same time, abortion rights are under fire. Fueled by the Supreme Court’s conservative majority, many conservative states are implementing laws that make abortions virtually impossible to access legally and safely. For example, Alabama’s governor recently signed into law a bill that holds doctors criminally liable, with a penalty of up to 99 years in prison, for performing abortions that are not medically necessary and also bans abortions at all points of pregnancy, even in cases of rape and incest. Georgia, Louisiana, Mississippi, Missouri, and Ohio also passed recent legislation banning abortions after six to eight weeks respectively, which is before many people even realize they are pregnant. Because habitual drug use can interrupt or alter menstruation, it can be even more difficult for those experiencing addiction to catch a pregnancy early enough to terminate it in one these states.

The concurrent rise of anti-abortion laws and punitive prenatal substance-use laws leaves people who become pregnant while having a substance use disorder — whether active or in remission — trapped in a dangerous situation that is often overlooked due to the stigma attached to substance use during pregnancy.

“Among people with substance use disorders, there’s no one more stigmatized than pregnant women,” said Stephen Patrick, a neonatologist and an associate professor of pediatrics and health policy at Vanderbilt University. He added that this pervasive stigma leads some people with substance use disorders to fear and distrust the medical community, even to the point of avoiding treatment.

Unfortunately, that distrust is often warranted. “Pediatricians often don’t know what they are required to do, and often states have a hard time interpreting what the federal government wants them to do,” Patrick explained. At the federal level, child welfare guidelines are vague and general, leaving states with broad discretion when it comes to defining child maltreatment and the subsequent responses. This means that when state or county authorities are misinformed about the reality of substance use and parenthood, that bad information can easily become codified into the system. Worse, it allows those policymakers determined to give the unborn personhood rights a means for policing the behaviors of pregnant people. “The end result is a system that in many cases over intervenes in some families that may be in recovery, and in other cases may not intervene when it needs to,” Patrick said.

Mandy’s story is just one example of the real-world impact of this stigma. My own life is yet another: I gave birth in 2014 while prescribed methadone. My daughter was hospitalized for neonatal abstinence syndrome, which is a common side-effect of appropriate methadone usage. She had no other health problems and, five years later, remains a healthy and developmentally normal child.

Nonetheless, a child welfare case was opened against me in the state of Florida. At the time, the case was deemed unsubstantiated — but four years later, a call by my mother-in-law to the Florida state child abuse hotline triggered another investigation. This time, the investigator made no attempt to speak with me before making her decision. She simply looked at my previous records of having been prescribed methadone while pregnant and filed to have my two daughters removed from my care. More than a year later, I am still fighting to get them back.

I love my daughters, and I have no regrets when it comes to birthing them — but I remember learning I was pregnant with my youngest less than a year after her elder sister was born. I was on a low dose of buprenorphine after having tapered from the methadone I began taking during my previous pregnancy. I had just finished grad school, and before entering treatment had been using heroin intravenously for nearly five years. My husband and I, both in recovery, were broke and sharing a mobile home with his parents in South Florida.

I became pregnant after being unable to access a timely refill on my birth control. Abortions in Florida are not covered by Medicaid. I didn’t feel ready for another child, but I had no way to finance an abortion. I don’t know that I would have decided to get one if I could have; that’s something I will never know, because it was a choice I simply did not have. Now, the same state that gave me no other options is withholding my children from me for having sought treatment for a medical condition.

No woman should feel compelled to terminate a pregnancy because she has a substance use disorder—but when jurisdictions withhold that choice, they force people who use drugs to suffer harsh punishments simply for becoming pregnant. Sometimes, that even includes jail time.

“In 2006, the Alabama legislature passed the chemical endangerment of a child law, and even though the legislation said this has nothing to do with pregnancy and drug use — it has to do with punishing adults who take children to dangerous places like meth labs — it was used as a basis for arresting pregnant women using any controlled substance, even if prescribed,” explained Lynn Paltrow, the executive director of National Advocates for Pregnant Women. This has led to the arrest or child welfare prosecution of thousands of women since it was implemented; in 2015, ProPublica identified 1,800 affected mothers. The law is still being used.

Both anti-choice activists and those who push for criminal or civil prosecution of pregnant people who use substances claim to be protecting children. But the reality is one of oppression and harm. “It is an anti-woman policy and an anti-child policy,” says Richard Wexler, the executive director of the National Coalition for Child Welfare Reform, of child welfare policies aimed toward substance use. “Any time we take a swing at so-called ‘bad mothers,’ it falls to the children.”

You see this in cases like mine; my judge doesn’t see my daughters crying every time I leave our once weekly supervised visit, nor does she have to answer their questions about why they can’t come home, but that doesn’t mean it’s not happening. You see this also in cases like that of Keri, a mother who I interviewed for a story I wrote for Filter Mag, who bought buprenorphine on the street and self-detoxed before giving birth to avoid child welfare intervention. A 2017 paper by Amnesty International reports that doctors across the nation are seeing substance-addicted people avoid timely prenatal care out of fear of prosecution, harming the very infants these laws claim to protect.

Across the country, harm reduction efforts are gaining traction, and the government is slowly increasing access to evidence-based medical care. But even while the general perceptions and treatment of people with addictions are advancing, pregnant people who use drugs continue to be stigmatized and punished.

Said Paltrow, “There’s no question that prosecutors and others have used the stigma and horrific medical info about the impact of controlled substances on pregnancy to establish in the law separate rights for fetuses, and anti-abortion principles that treat pregnant women like criminals.”

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.

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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.