Five years ago, I had a thriving career at a large software company. My medical costs were non-existent because my employer paid the premiums on a zero-deductible plan for me and my kids. I had no idea how lucky I was then—or how unlucky I would be once I became too sick to be an asset to my employer anymore.
My health had always been mysteriously bad: From a young age, I was plagued by symptoms ranging from GI problems to muscle weakness. I spent my childhood in doctor's offices undergoing painful medical tests in search of answers. By the time I was an adult, I had normalized my poor health, and I expected to keep pushing through like I always had. No one knew what was wrong with me, so it was easy to pretend there was nothing wrong, too.
By the time I was 33 years old, though, I was no longer healthy enough to work. I was in and out of the hospital on oxygen, and my chest felt like it was being crushed from the outside when I tried to breathe. I struggled to focus my eyes and keep them open, and my eyelids began to droop severely. I had constant GI problems, and my fatigue levels made it nearly impossible for me to do simple tasks like grocery shop.
My doctors ran test after test, but no one could figure out what was wrong with me. After a few months on long-term disability leave, my employer terminated my employment and, with it, my health insurance. I couldn't afford to pay $1,000 per month for COBRA, so I went without insurance entirely. Soon, my long-term disability insurer decided I was healthy enough to go back to work, despite the testimony of four renowned specialists, and they terminated my payments without notice. It was two weeks after Christmas. Suddenly without income, I had to use food stamps and rely on the kindness of family, friends, and internet strangers to pay the rent.
Shortly before I lost my medical insurance, my doctors told me they had an idea of what I might possibly have: mitochondrial disease. The only way mitochondrial disease can be diagnosed is through a $25,000 muscle biopsy or even more expensive genetic testing. I begged them to run comprehensive genetic tests that covered all 1,500 genes currently known to cause mitochondrial disease, but they wanted to run single-gene panels to save money for my insurance company. After two gene panels came back normal, they decided it made more sense to try a muscle biopsy. By then, my insurance coverage was gone.
There was no way I could afford a muscle biopsy. We didn't qualify for Medicaid. My only hope was the promised expansion of Medicaid under the Affordable Care Act (ACA), which would allow more people to qualify for the program. For months, my medical care ceased entirely. I didn't see my doctors, fill any prescriptions, or undergo any further testing. But as soon as the ACA launched state health insurance exchanges, I applied and was approved for Medicaid. Within weeks, doctors removed a small piece of muscle from my upper right arm and sent it to another state for testing. After a couple of months, I finally received a mitochondrial disease diagnosis.
My diagnosis paved the way for me to apply for Social Security Disability Insurance (SSDI). Like most applicants, I was denied—twice. I had to hire a lawyer and attend an administrative hearing before I was approved for benefits. Once I was approved for SSDI, I was also approved for Medicare. Once I had stable medical insurance (and a diagnosis), I was able to find treatments that dramatically improved my quality of life and even allowed me to find occasional work as a freelance writer.
I never expected to become disabled in my 30s. I certainly couldn't have imagined enrolling in Medicare at 35 years old. But now I rely on these social programs to support my family and provide us with the medical care we need. All of them have been targeted by President-elect Trump, and the reforms he's proposed will be a nightmare for my family and millions of other disabled Americans.
No one knows exactly what a Trump presidency—bolstered by a Republican Congress—will look like for America yet. What we do know is what he told us during his campaign, and none of it looks good for me or my family. Trump has vowed to at least partially repeal the ACA, and it's included as one of his top priorities on his website. But even with a Republican-led Congress, Democrats would likely filibuster any attempts to repeal the ACA entirely, according to Michael Sparer, chair of the Department of Health Policy and Management at Columbia's Mailman School of Public Health. What is much more likely is that Congress will use the budget reconciliation process—a backdoor way to avoid filibusters and amendments—to chip away at the financial aspects of the ACA, such as federal subsidies, the Medicaid expansion, and penalties on employers and individuals for non-compliance. This could happen as soon as January.
The budget reconciliation process is sneakily effective, but it has its limitations. It can't be used for any aspect of Obamacare that isn't financial, so the protections for individuals with pre-existing conditions, the ability for parents to add their adult children to their health plans, and other benefit-focused provisions are safe from that. But there are other ways Trump can chip away at it.
The easiest one would be to stop appealing a lawsuit, House v. Burwell, that was filed by Republican lawmakers in 2014. That lawsuit argued that the Obama administration had unconstitutionally spent money that Congress hadn't formally allocated by providing federal subsidies to help the working-poor buy health insurance. Last year, Federal District Court Judge Rosemary Collyer ruled in favor of the Republicans, but she declined to enforce her decision pending appeal (which was quickly filed by the Obama administration). If Trump drops the appeal, Collyer's ruling stands, and insurers would suddenly lose the reimbursements they receive from the federal government for consumers whose wages fall between 100 and 250 percent of the federal poverty line. Because insurers participating in the exchange would still be mandated to provide coverage to these consumers, even without the federal reimbursements that offset their costs, many will likely drop out of the exchange for 2018—effectively decimating the program.
Trump has told reporters he likes some of the ACA's more popular provisions, including the protections for pre-existing conditions and the provision that allows adult children to remain insured on their parents' policies. Unfortunately, this news isn't as positive as it seems; premiums can only remain affordable when sick people are enrolled if enough healthy people enroll, too, Sparer says. Gutting the financial provisions of the ACA that subsidize premiums and fine individuals for failing to obtain coverage would remove the incentive for healthy consumers to enroll, creating unsustainably high premiums for the rest of the market.
We had a sneak peak of what this type of legislation could look like when Republicans passed a proposal last year to preserve pre-existing condition protections while removing the rest of the ACA's financing. If that legislation hadn't been vetoed by President Obama, the Congressional Budget Office estimates that 22 million people would've lost their health insurance.
Under this scenario, premiums would go up for everyone. But what's at stake for disabled Americans like me is our ability to keep our health insurance—or secure any health insurance at all. Trump's solutions for disabled and chronically ill consumers are hazy at best. His website proposes returning to state high-risk pools to push them out of standard health plans and onto insurance plans that are specifically designed for sick consumers (a disastrous idea I wrote about for VICE earlier this year).
"The concern with high-risk pools is twofold," Sparer says. "One, it costs a lot of money to provide such coverage, especially since there are no young and healthy folks to help subsidize the cost, and two, it fragments the insurance markets rather than consolidating them."
Rachel Burke is a mother of two young children who share her genetic disease. She relies on a ventilator, wheelchair, and in-home nursing care to remain independent. Her children already have severe medical problems and will eventually need the same level of care as she does. "My central line supplies and nursing care are $20,000 a month," she says. Like many disabled Americans, Rachel receives SSDI and is on Medicare. Medicare is a government-run health plan that isn't subject to the ACA. However, that doesn't mean it's safe from Trump's proposed healthcare reform.
"The idea would be to give beneficiaries a voucher worth a set amount of money, adjusted in part by the age and health status of the enrollee, and let them use that voucher to purchase insurance coverage," Sparer says.
The problem with this type of reform is that disabled consumers wouldn't be able to purchase health insurance on the open market like everyone else. Republicans like Paul Ryan want to push them onto high-risk insurance plans with high deductibles and low coverage. In the past, this has left millions of disabled Americans without insurance coverage entirely—or bankrupt, or both.
"If Trump repeals the ACA and allows the market to set rules again, the premiums would likely exceed our income each month, many needs would not be covered at all, and I would need to be put in a nursing home to get any medical care," says Burke. "I'd be dead within a year from infection." (This may sound hyperbolic, but central lines carry such a high risk of infection that my own doctor wouldn't let me get one when I was getting infusions multiple times a week and losing vein access. They have to be accessed in a completely sterile environment, and you can bet any low-cost nursing home will not have the resources for that.)
My medical situation isn't as tenuous as Burke's, but my family would also suffer under Trump's plans. Trump's tax cuts are likely to result in a reduction of SSDI payments, which primarily supports my family. As I wrote for VICE earlier this year, I too would likely be unable to afford the cost of privatized high-risk health insurance plans, which would render me entirely without medical care. Even my children could lose their medical insurance, since my family only qualified for Medicaid after the expansion and states won't be able to afford to preserve the expansion without federal funding.
For now, none of us know for sure what Trump plans to do. Sparer reminds me that even Republicans probably don't want to suddenly leave 20 million Americans without medical insurance. Vice President-elect Mike Pence expanded Medicaid in his home state of Indiana, so there's a chance he'll oppose dismantling it. Disabled Americans have to hope for that.