Will Cathcart

I was diagnosed at age 2 with cystic fibrosis, a hereditary disease affecting more than 30,000 Americans. CF causes thick mucus to build up in the lungs. The result is a short life marked by chronic infections and relentless coughing. Cystic fibrosis is extremely rare — a wicked lottery ticket. It is a horrific way to die, and it is not an easy way to live.

I’m now 34. Statistically, I have seven years left.

For the past four years, however, a new medication made by the Boston-based company Vertex has miraculously reversed the course of this disease for hundreds (and potentially thousands) of people, including me, with a certain form of CF. Kalydeco targets the cause rather than the symptoms of CF, and promises to extend both the length and quality of my life.

I’ve been healthy enough to continue my work as a journalist in Eastern Europe, and I’m now probably the only person you’ve heard of who is looking forward to middle age. But miracle drugs don’t come cheap. Kalydeco, without insurance, would cost $300,000 a year.

That makes it one of the most expensive pills ever created. It seems less exorbitant, though, when you consider the 14 years of research that went into making this drug — and the need to incentivize companies to keep innovating. We still have a long way to go to find a cure.

Because of breakthrough drugs like this, as costly as they are, I am among the first CF patients to even have a chance. For generations, CF patients have participated in clinical trials, risking everything, to make these treatments a reality. Yet it’s likely we will lose access to this life-saving drug (along with many others) if the Affordable Care Act is repealed.

My life now depends on the ACA’s most unpopular feature, the “individual mandate.” By requiring younger, healthier Americans to buy insurance just like older, sicker ones, the mandate makes it financially feasible for companies to offer policies to people with pre-existing medical conditions. It also offers a measure of fairness by preventing low-risk individuals from waiting until they get sick to buy insurance. Instead, the risk is shared by everyone in the pool.

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My disease is obviously more expensive to treat than most. But you can think of cystic fibrosis patients as mutant canaries in the coal mine. We are plagued by antibiotic-resistant bacteria. The research and innovation that go into the drugs keeping us alive today may keep you alive tomorrow when antibiotics are no longer effective.

The only thing harder than fighting a drug-resistant lung infection is fighting an insurance company. I’ve experienced every insurance dilemma you can imagine. In the past decade alone, I’ve signed up for six health insurance companies and state pools.

I’ve taken a job at a large corporation to get insurance and then waited out the corporation’s 12-month period to cover my pre-existing condition. I’ve experienced not only job lock, but what I call “employment hostage” — when getting fired becomes a matter of mortality. I’ve also had immense help along the way from caring individuals within all of these institutions. Now, a $300,000-a-year drug is what stands between my lungs and a hospital bed and some serious intravenous chemicals.

Like others on this medicine, I can never go back. The data suggest that “if you discontinue the drug there can be a precipitous worsening, even worse than before starting the drug," says Patrick Flume, a CF specialist.

During one battle with my insurance company, I ran out of Kalydeco for 14 days. My health tanked. My lung function plummeted, as did my hope for the future. It was a long way to fall.

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The Republican majority in Congress wants to “repeal and replace” a health care law that has provided insurance to more than 20 million people. Yet so far, every suggested alternative plan translates to a reduction in health care. Most focus on reducing taxes and shifting power to the states. Shifting costs and accountability will only lead to a cluster of small risk pools and a labyrinth of state laws to navigate. I know that road well; it’s a nightmare.

As for President Obama’s legacy, he has the least to lose. I watched his first inauguration from a hospital bed in Charleston, S.C., and if Obamacare is repealed, I will lose access to the medication that has kept me out of that hospital these past four years.

A price tag of $300,000 a year on my head has inspired some existential questions: Is my life really worth $300K a year? Without insurance, if I fall ill, my family will likely go bankrupt trying to keep me alive. As Congress prepares to kill the ACA, I may soon get real answers to these questions. I realize none of this is personal. Federal lawmakers don’t wish me harm. And yet I am about to witness a referendum on my own existence.

Will Cathcart is a freelance journalist and editor based in Tbilisi, Georgia, covering geopolitics in the post-Soviet region. Follow him on Twitter @Cathcartian.

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