The Republican Healthcare Reform Plan Would Devastate Families Like Mine

(Photo by Kitron Neuschatz) ​

Five years ago, I developed a mysterious illness. I saw dozens of doctors, but none of them could explain my muscle weakness, debilitating fatigue, gastrointestinal issues, or the pinprick pains in my hands and feet. After months of testing, one doctor floated a possible cause: a rare group of disorders called mitochondrial disease. But I needed a muscle biopsy to get an accurate diagnosis, and that cost $25,000.

The problem was, my symptoms had gotten so bad I had left my job as a technical editor—and with it, my health insurance. When I left work, I was given the option to continue my insurance through COBRA for more than $1,000 per month, but there was no way I could afford those payments on my disability income. Nonetheless, when I applied for Medicaid, I was denied for making too much money.

There was no way I could pay for a biopsy out of pocket, even though it was clearly the next step in figuring out what was wrong with me. Neither could I afford to go back to my doctors for regular visits. For months, my medical care remained in limbo.

But then I got lucky. Obamacare's Medicaid expansion went into effect, and I was immediately approved for coverage. A few months later, after a small piece of muscle was removed from my upper arm and sent across the country for highly specialized testing, I was officially diagnosed with mitochondrial disease and started on a treatment plan that helped stabilize my condition.

If Republicans got their way, a story like mine wouldn't be possible.

Ever since Obamacare was passed into law in 2010, the GOP has made every effort to strike it down—through court challenges, repeated votes in the House to repeal it, and filibusters. Republicans don't agree on what would replace the complex law, but there's one element that's particularly scary to people like me that made it into House Speaker Paul Ryan's healthcare reform plan last month: high-risk pools.

High-risk pools, first introduced in the 1970s, are state-subsidized private healthcare plans specifically designed for the chronically ill and disabled. Ryan argues that relegating the likes of me—the 10 percent of Americans with the highest medical costs—to these pools will reduce premiums for the remaining 90 percent of people.

But state legislators rarely lived up to the daunting prospect of providing medical insurance to those with the greatest need. Instead of properly funding these pools, many states curtailed their enrollment over time, implemented further preexisting condition restrictions, and forced the sick into high-cost, low-coverage private plans. By 2009, the Government Accountability Office found that fewer than 200,000 people were covered by high-risk pools, even though nearly 4 million people were eligible for coverage—and their deductibles were more than three times higher than the average employer-sponsored health plan. Millions of the chronically ill and disabled were essentially forced to go without health insurance entirely.

The reason high-risk pools fail is simple. Health-insurance premiums are only affordable when the majority of consumers don't require high-cost medical care, thus spreading the cost for expensive treatments around. An insurance pool comprised solely of sick consumers may keep healthcare costs low for the rest of the country, but it creates an unsustainable insurance system for the sick. Republicans have never supported raising taxes to pay for these pools, and underfunded high-risk health insurance plans have a long history of hanging the sick out to dry.

"To make these high-risk pools work requires substantial financial investments," Rick Mayes, a former White House Medicaid policy advisor and current associate professor at the University of Richmond, told VICE. "As a result, most health experts see high-risk pools as, at best, a stopgap reform. Nobody wants to be in these pools unless they have no other way to obtain insurance protection, and no organization, insurer, or government body really wants to pay for them because they're so expensive."

The Republicans' new health plan invests $25 billion over ten years in these plans, but healthcare experts say that is nowhere near enough to adequately fund them: The real cost of these plans is estimated to be between $70 and $100 billion over a decade. By contrast, Obamacare is expected to bring in more revenue than it needs to pay for itself, according to a new report released by the Congressional Budget Office. In fact, the nonpartisan agency estimated that repealing Obamacare would increase the deficit by $137 billion over a decade.

The threat to the chronically ill under the Republican plan doesn't end with high-risk pools. While the Ryan proposal preserves Obamacare's protections against insurance denials and rate hikes for preexisting conditions for now, it comes with a catch: The protections are only effective as long as you remain insured. If someone with a chronic illness (even one as mild as diabetes or asthma) experiences a lapse in his or her healthcare coverage, his or her insurance rates can then be raised based on their health history.

While the GOP proposal is meant to appeal to young, healthy voters looking to cut their own insurance costs, nearly all of us will eventually fall into these higher-risk categories as we age. Without the ACA's protections, millions of Americans could lose access to comprehensive and affordable healthcare. Lapses in insurance coverage can occur for many reasons, but under Ryan's plan they would lead to a lifelong loss of coverage for preexisting conditions.

Politics can seem abstract, and many controversial policies will end up having little affect on the average voter's life. But Obamacare is why I don't have to worry about an insurer denying me coverage because of my condition, and neither do my children if they inherit it. If the Republicans win in November, that could change.