The Affordable Care Act Would Have Saved My Husband’s Life

Editor’s Note: This article is adapted from a Facebook post.

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.

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.

He had a pre-existing condition: he had taken medication for acne

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, there will be many more stories like Bob's

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.

As Congressional Republicans careen face-first towards the repeal of the Affordable Care Act, another threat is taking shape that promises to devastate the services that seniors and people with disabilities need. In addition to rolling back the health care law, and the Medicaid expansion that came with it, the Trump administration has announced its intention to turn what is left of Medicaid into a block grant.

Most Americans see Medicaid as only a health insurance program, but it is also the main source of funding for a wide variety of disability and aging services that keep people out of institutions. From the 93-year-old grandmother who needs an attendant to help her get out of bed, to the 24-year-old with Down Syndrome receiving a job coach, to the 6-year-old with a disability whose parents need support paying for skilled nursing care in their home—the Medicaid program is critical to ensuring the independence and freedom of disabled people of all kinds.

“Block-granting” the program will transform it from a guaranteed benefit for low-income Americans and people with disabilities to an annual lump sum payment to states that is not tied to the need for services. If an increasing number of people needs these healthcare services, a block grant will not adjust to meet rising demand.

A block grant will not adjust to meet rising demand

In addition, under the current Medicaid program, the federal government matches each dollar spent by states, enabling policymakers to make new investments toward eliminating waiting lists and broadening available services. However, without the guarantee of matching funds, states will not be able to sustain existing services—much less expand them to meet the tremendous unmet need in the disability community.

In fact, previous block grant proposals resulted in a loss of approximately 1 trillion dollars of federal investment in Medicaid over the next decade.

Additionally, the Trump approach would diminish the federal government’s historic role in using Medicaid funds to deinstitutionalize seniors and people with disabilities. For nearly 20 years—since the Supreme Court ruled in Olmstead v. L.C. that people with disabilities have a right to access supports in the community—federal policymakers have used Medicaid dollars to reward states that moved people out of institutional facilities and instead offer in-home services and supports.

These efforts depend on the federal government using innovative programs like Money Follows the Person. This program helped more than 63,300 people with disabilities leave institutional settings by providing an enhanced federal match rate to states to cover the full cost of supporting a person in the first year after they leave an institution.

In the absence of a federal role in Medicaid to promote community living, people with disabilities will find themselves at greater risk of institutionalization—despite the fact that they overwhelmingly express a preference for living in their own homes and communities.

As we fight back against Donald Trump’s assault on so many different communities, people with disabilities supported by the Medicaid program deserve our full advocacy and activism too.

When epidemiologists at the Johns Hopkins School of Public Health recently recalculated cervical cancer mortality rates, they found that black women were nearly twice as likely to die from the disease as we previously thought. What’s more, the researchers found that black women die from cervical cancer at rates more than double those of white women—a gap that is also twice as large as earlier estimates.

The study revealed that, among black women, there are 10.1 cervical cancer deaths per every 100,000 individuals—versus just 4.7 per 100,000 white women. Previously, these figures were believed to be 5.7 and 3.2, respectively.

It’s hardly a secret that socioeconomic status and racial discrimination greatly impact patients’ health outcomes in the United States. Low-income patients with diabetes are 10 times more likely to undergo limb amputation than affluent ones, black women are 41% more likely than white women to die from breast cancer, and even though African Americans are more likely to have elevated blood pressure than white Americans, they are 10% less likely to be screened for high cholesterol. The list goes on.

But what makes the recalculated cervical cancer death rates stand out is that the disease is preventable as long as it is detected early and treated appropriately. The low fatality rates among white women by and large reflect that fact. Black women, however, die from cervical cancer at rates comparable to those in sub-Saharan Africa.

One of the factors behind the disparity is that black patients face inferior access to quality detection services and follow-up care (the root cause of which is, of course, racial discrimination). Another recent study of patients with advanced-stage cervical cancer found that a majority received substandard care, and that those patients were more likely to be black and low-income.

How do we get adequate preventive care to all people?

As Dr. Otis W. Brawley, the Chief Medical Officer for the American Cancer Society, said in response to the Johns Hopkins study, “When we look at the difference between black and white, and rich and poor, we find the same disparity. The quality of assessment and follow-up treatment can be the difference. The question becomes: How do we get adequate preventive care to all people?”

But unlike the medical community, whose goal is to expand care, Congressional Republicans’ relentless attacks on the Affordable Care Act and Planned Parenthood will dramatically reduce it—and worsen the racial disparities that have killed so many black women.

The Affordable Care Act mandated coverage of cervical cancer detection services—along with all preventive care—at no cost to the patient. But the Republican-controlled Congress and White House have already taken steps to dismantle the ACA, and the fate of preventive care is uncertain as a result. (Conversations between House and Senate Republicans reveal that there is no consensus around how best to replace the healthcare law.) If racial disparities in cervical cancer death rates boil down to unequal access to quality detection services and subsequent treatment, then patients who struggle to afford care are bound to be worse off under repeal.

The proposal to roll back the Medicaid expansion, backed by many Congressional Republicans, threatens to strip coverage—and thereby the ability to obtain detection services and treatment—from the patients who arguably need it the most. Some 11 million low-income individuals will lose access to Medicaid under this proposal, and black women are more likely to be affected. Moreover, the proposal to turn Medicaid into a block grant will cut between 14 million and 20 million patients from the health insurance program.

Furthermore, Congressional Republicans continue to target Planned Parenthood, a core provider of reproductive and sexual health services—cervical cancer detection included. If they defund Planned Parenthood, the health care provider will be stripped of more than one-third of its budget. Low-income women and women of color, who are disproportionately represented among its patients, will likely suffer worse medical outcomes as a result. And if Congressional Republicans follow through with plans to slash Title X—the nation’s only federal source of funds for reproductive health clinics—patients will find cervical cancer detection services (and other vital healthcare) even further out of reach.

Racial disparities in medical outcomes are completely avoidable—particularly when the disease in question is as preventable as cervical cancer. While the medical community rallies to address these differences in mortality rates, efforts to rectify them will only be stymied by Congressional Republicans. But the cost, in this case, is people’s lives.

Last night, President Trump announced that he is nominating Neil Gorsuch to be a Supreme Court justice. Like the rest of Trump’s nominees, Gorsuch is a millionaire who consistently sides with corporations and institutions rather than people—including children.

In 2004, the parents of a then-ten-year-old boy known only as “Luke P.” enrolled him in a residential school. Luke, who was diagnosed with autism at age two, had been unable to carry over the functional behaviors and skills he learned at school to other environments. Although he was toilet trained at school, when he was at home he spread bowel movements around his room. And in some respects, he was actually regressing: an occupational therapist observed that school staff were even inadvertently reinforcing negative behaviors.

But Luke’s home school fought his parents’ request that his residential placement be covered by the district under the Individuals with Disabilities Education Act (IDEA), an education law that guarantees students with disabilities “a free, appropriate education” that is tailored to their needs. Jeff and Julie P. took on the district and won repeatedly, in Colorado administrative proceedings and then in federal district court.

Then they reached the Tenth Circuit and went before Judge Neil Gorsuch.

Gorsuch reversed the district court, holding that the IDEA only required a school to provide a “basic floor of opportunity,” and nothing more. Even though a residential program obviously provided far more benefits for Luke, Gorsuch ruled that his parents were not entitled to reimbursement for the additional cost because Luke had no right to an education that would allow him to function in environments outside of school.

Again and again, Gorsuch has acted against individuals’ rights and interests—usually to the benefit of big businesses. As a trial lawyer, Gorsuch represented a billionaire suing a company for a massive payout—at the expense of the Teachers’ Retirement System of Louisiana. On the bench, he’s ruled against workers again and again—most famously in the Hobby Lobby case, which held that for-profit companies can force their religious views on their employees. When there’s a choice between placing a burden on a corporation or institution and protecting people, Trump can count on Gorsuch to toe the line.

Gorsuch’s fondness for corporations is anything but subtle.

Gorsuch’s fondness for corporations is anything but subtle. One of his most troubling views has to do with the rules and regulations agencies make to implement critical laws like the Clean Water Act (or, say, IDEA). In short, he’s against them.

Gorsuch has been a vocal opponent of the 1984 Supreme Court decision that requires courts to defer to agencies when it comes to interpreting the laws they’re charged with enforcing. According to Gorsuch, that complicates life for businesses who may want to resist regulations. “Who can even attempt” to fight a rule, Gorsuch asked in a 2016 opinion, “without an army of perfumed lawyers and lobbyists?”

If it were up to Gorsuch, courts would be able to overrule agencies. That would be a massive blow to the means by which our government regulates businesses and protects Americans’ health and safety. People without the means to challenge corporations in court when they pollute or after financial institutions exploit them rely on government—on agencies like the Environmental Protection Agency—to keep them safe.

Gorsuch’s anti-regulatory stance is just another way he’s in line with Trump and his congressional allies. Trump has issued a sweeping freeze on regulation, and he’s signed an executive order creating new obstacles to rulemaking and suggesting agencies have to repeal two rules to make one new rule—with the explicit purpose of giving businesses a boost. Meanwhile, the House has passed a trio of bills that would let Congress and the courts strike hundreds of critical regulations—including fair pay and sick leave guarantees, nutrition standards for public schools, and limits on corporate pollution and contamination—and make it next to impossible for agencies to enact new protections.

It’s easy to paint Gorsuch’s nomination as “more of the same” from the Trump administration, but this nomination is different. The judiciary is supposed to be impartial. Gorsuch’s job as a justice on the Supreme Court would be to serve as an independent check on the other branches of government—a role that’s more important than ever in the wake of the recent spate of extreme executive actions that challenge the separation of powers.

But Gorsuch won’t check the Trump administration—he’ll aid and abet it.

According to The Hill, the Trump transition team has proposed cuts similar to those found in a Heritage Foundation budget blueprint that would eliminate $10.5 trillion in federal spending over the next 10 years.

Under the Heritage plan, the cuts would be dramatic. They would reduce funding for the Departments of Commerce, Energy, Transportation, Justice, and State, and eliminate funding entirely for the National Endowment for the Arts, the Corporation for Public Broadcasting, the Paris Climate Change Agreement, and the Office of Energy Efficiency and Renewable Energy.

The cuts would negatively impact low-income people, people of color, and many other groups in terrifying ways. But there is one specific group that would be caught in a perfect storm of slashed services: survivors of sexual and domestic violence, who rely on many government services that would be on the chopping block.

The proposed cuts would eliminate grants from the Violence Against Women Act (VAWA), which funds services for survivors like transitional housing, legal assistance, law enforcement training, and support for people who have been sexually abused within the prison system. These grants have been incredibly effective—since the passage of VAWA in 1994, intimate partner violence has decreased by 64%. That success is due, at least in part, to the fact that they work in tandem with other programs, like Community Oriented Policing Services (also slated for elimination under the Heritage Foundation proposal), to make sure police have the staff, technology, and training they need to properly respond to survivors.

These cuts would also eliminate the Legal Services Corporation (LSC), which is the single largest funder of civil legal aid. The most important legal actions that survivors take often happen in civil, not criminal, court—civil court is where they file for divorce from abusive partners, seek custody of their children, and apply for protective orders.

According to Lisalyn Jacobs, Vice President of Government Relations at Legal Momentum, “civil litigation can be a battle of who can wear down who first, and the survivor is far more likely to have less resources to stay in court for a long time.” Survivors are disproportionately likely to be low income, and have almost always been subjected to financial abuse that leaves them with limited access to cash. That makes it harder for them to afford a lawyer or endure a lengthy civil legal case—hence the need for civil legal aid.

The direct elimination of federally-funded support services and legal aid would create an extremely hostile climate for survivors, and the Heritage proposal would hurt this group in other ways as well. It would reduce funding for the Department of Justice Civil Rights Division, which in turn could affect funding for housing discrimination cases. Survivors are particularly vulnerable targets of housing discrimination—landlords often evict survivors or deny them housing specifically because they’ve been abused in the past. The DOJ Civil Rights Division currently extends legal protections to survivors to prevent this, and holds landlords accountable for any instances of biases or discrimination. This cut, then, would immensely weaken protections that survivors rely on in order to achieve safe housing and distance from an abuser.

The overarching conservative argument behind the Heritage proposal is that it’s the responsibility of the states, not the federal government, to protect survivors. But states do not have the finances, leverage, or incentive to provide the same level of service. For example, if victims or their abusers regularly cross state lines—like many people in the DC metro area do simply to commute to work—then state-level policing efforts to enforce protective orders would fall tragically short. Survivors’ mobility often relies on the portability of their protective orders, and only the federal government has the wherewithal to ensure interstate cooperation on these orders.

Each one of these proposed cuts individually would place survivors at increased risk, but combined they would leave survivors without police, housing, and legal protections that they desperately need. That paints a very dark picture for survivors—one that legislators should be mindful of when they draft the federal budget in April.

Editor’s Note: This post has been updated for clarity so that no readers are under the impression that the Trump Administration has released a formal budget proposal.

The Affordable Care Act Would Have Saved My Husband’s Life

Trump’s Plan for Medicaid Would Decimate Services for People With Disabilities

There’s a Huge Racial Gap in Cervical Cancer Deaths. Repealing Obamacare Will Make it Worse.

Trump’s Supreme Court Nominee Rules for Corporations, Not People

Trump Considering Cuts that Would Create a “Perfect Storm” for Domestic Violence Survivors

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