SURVIVAL

How Trumpcare Will Kill Me Before Cystic Fibrosis Can

My access to a breakthrough cystic fibrosis drug will likely go away under the Trump-Ryan plan. Without it, I will lose my lifeline and the future Obamacare made possible.

Photo Illustration by Sarah Rogers/The Daily Beast

I am 34 years old. If I were Canadian, there’d be a good chance I could live 17 more years. But in the America of Donald Trump and Paul Ryan that is not going to happen…

At age 2, I was diagnosed with cystic fibrosis, a hereditary disease affecting 30,000 Americans. Cystic fibrosis (CF) causes a vicious cycle of chronic lung infections caused by the buildup of thick mucus and digestion problems, which deprive the body of nutrients that the immune system needs to fight off the infections.

Imagine being underwater and coming up for air, but instead of breathing in, you uncontrollably cough that air out. The harder you try to breathe, the more you cough. At its worst this disease feels like a long, drawn-out panic attack set to the soundtrack of an endless hacking cough.

At 34, statistically, I have seven years left before my lungs cease to function. If I were Canadian, statistically, I would have 17 years left to live.

This isn’t some political talking point. Even Fox News didn’t try to spin this one. This is cold hard data from a recent study by the U.S. Cystic Fibrosis Foundation. The conclusion is that Canada’s nationalized single-payer health-care system, which guarantees health insurance for everyone, is the primary reason why Canadians with my disease live 10 years longer.

As Drs. Patrick Flume of the Medical University of South Carolina and Donald Van Devanter of Case Western Reserve University put it, “Now we are faced with the more difficult task of trying to identify and implement solutions to bridge this survival gap, which seems to be based on fundamental differences in the two nations’ health-care systems.”

For the past four years, however, my disease has gone in reverse: I’ve been gradually getting better. It is an extraordinary sensation. A new medication called Kalydeco, made by the Boston-based company Vertex, has given me the promise of extending both the length and quality of my life.

I’ve been healthy enough to work abroad as a freelance journalist covering conflicts at the intersection of Eastern Europe and the post-Soviet Union. I am now making long-term plans, which I never would have contemplated. To put it another way, this drug works better than Canada, and I’m making plans.

A year and a half after I began the drug, I got married. My wife and I hope to one day have kids. But today is a sobering day. If the House Republicans vote to replace the Affordable Care Act with the Trump-Ryan American Health-Care Act, a plan that likely won’t allow me to remain on this drug, then my long-term plans go out the window. My outlook would likely regress back to one of short-term survival and carpe diem. That is a very different future than the one I plan to have.

The data from the Canada study was taken before Kalydeco hit the market. And then it took two more years for Canada to negotiate a price with Vertex to provide Kalydeco to those it can benefit. If the current American health-care system or an improved one remains, then I, and others like me, will continue to get better every single day.

Living in Canada not only means that we would live 10 years longer because we would be guaranteed access to medication, treatment, education, and even lung transplants, it means we would be guaranteed access to this miracle drug. In that case, the sky is the limit regarding our life expectancy. That is the future I am fighting to have.

The problem is that Kalydeco, the first of a new class of small-molecule CF drugs, costs $300,000 a year. You read that correctly: $300k per year. It is one of the most expensive pills in the world. Miracle drugs may be made in heaven, but they are priced in hell. Because of this price, patients in many countries are denied this medication. The only way I have had any chance at access to this medication is through Obamacare (the ACA).

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The ACA’s unpopular individual mandate, in which everyone shares the risk, allows the system to cover my pre-existing condition. This mandate prevents low-risk healthy people from gaming the system by not buying health insurance until they get sick and need it. The risk is shared by everyone in the pool, which means that these companies can afford to offer health-insurance policies to people like me. Essentially to have free-market health care that can cover pre-existing health conditions, which most Americans want, then there must be an individual mandate, which most Americans do not.

The research and methods like rational drug design that have led to recent successes in cystic fibrosis will have effects for health conditions all across the board. It will save lives. Kalydeco uses small molecules to target the cause of the disease instead of the symptoms.

If Congress adopts a replacement plan to the ACA that reduces coverage, as the AHCA does, it will directly reduce my life span and that of many others. For free-market champion conservatives, look at it this way: If breakthrough drugs like Kalydeco are no longer purchased, then funding will dry up for much-needed pharmaceutical breakthroughs and alternative therapies, as we approach what the World Health Organization calls a “post-antibiotic era.” I, like most patients with cystic fibrosis, am prone to lung infections and already fight antibiotic-resistant bacteria. The innovation behind the drugs keeping me alive today may keep you alive tomorrow when antibiotics are not longer effective.

Any alternative plan without a single-payer mandate will not sustain the costs of treating people like me. Punting this to the sates is not the answer. Health care is a national problem and it will only be solved through national unity. Insurance is a matter of shared risk; this cannot be conditional.

If we want to remain on a free-market-based system, which Obamacare is, then it requires making difficult choices as a nation. Allowing people to choose when or where to share that risk may sound popular, but it will cause private insurance companies to bail and the system to collapse. Or it will drag us back to the unnerving days of 2009, when anyone who is sick can be dropped or excluded at anytime.

If you think fighting a drug-resistant lung infection sounds difficult, try fighting an insurance company. Health-insurance companies adapt, mutate, and resist quicker than any bacteria on earth. My family and I have spent more cumulative hours on hold waiting for an insurance representative than the lifetime of many CF patients—a heartbreaking, gut-wrenching reality.

I’ve gone through just about every scenario you can imagine: I’ve been dropped from my insurance plan; gone on COBRA, paid for a high-risk state pool; used an “insurer of last resort;” taken a job for a corporation to get health insurance; worked and waited the 12-month period for said corporation’s health insurance to cover my pre-existing condition; experienced not only job lock, but what I call “employment hostage”—when getting fired becomes a matter of mortality. So yeah, Obamacare sounded pretty good.

Hospitals are sobering. Political predispositions are left at the automatic door with the round metal trashcan that doubles as an ashtray. At that point, things like paying a higher premium or the lack of choice in a national health-care system cease to matter.

When I get sick with a lung infection, I get pumped full of enough intravenous chemicals to pickle a live Komodo dragon.

Side effects are: nerve damage, diarrhea, headache, nausea, and vomiting, kidney damage, hearing problems, and some terrifying condition known as red man syndrome, which I have yet to experience. We, as a nation, have endured orange man syndrome for almost nine weeks now, and I’d prefer all of the above to it.

Yet neither the side effects nor the insurance tribulations are the hardest part about living with CF. The hardest part about this disease is the suspended animation of watching your friends and family fear your demise, so that you do not have to. This is love. You learn quickly that your life is not your own.

***

Within hours of his inauguration, President Donald J. Trump took his first step in dismantling Obamacare with his very first executive order to “seek the prompt repeal of the Patient Protection and Affordable Care Act.” Now that plan is here in the form of the AHCA. It translates to a reduction in health care and a failure for those who need it most.

Shifting power to the states and reducing taxes has little to do with health care. These plans will also shift the costs and accountability to the states—fragmenting the pool of risk. If Obamacare is “replaced,” I, along with many others, will likely lose access to the medication that has kept me alive for these last four years.

The problem with Obamacare is that deductibles and premiums are higher than people would like, but repealing it will only make them higher. The ACA has reduced hospital readmission rates. If it is repealed, many small hospitals will go out of business because the U.S. health-care system cannot afford to go back to treating people with no insurance. The ACA does not reduce taxes on higher income households, which is the real issue at the Paul Ryan heart of this debate.

In the 1960s, Medicare was just as controversial as the ACA is today. Today Americans see Medicare as an entitlement. The same will eventually be true of universal health care. It will be as standard and as essential as the roads and power lines that make up America’s physical infrastructure.

Much like civil-rights legislation, the ACA was rammed through a reactionary opposition with the intention of fixing and improving it—as a work in progress. Repealing it will be a step backward. The ACA is an imperfect law that has helped many people. Much like Churchill said of democracy, Obamacare is the worst form of American national health care, “except for all those other forms that have been tried from time to time.”

Cystic fibrosis is a wicked lottery ticket. It is a horrific way to die, and it is not an easy way to live.

And yet for me, a little blue pill taken twice a day breaks that cycle of lung infections and malnutrition. But aside from the exorbitant price there is another catch: Kalydeco is genotype-specific, meaning that this drug alone is only effective in 4 percent of patients with CF who have a specific mutation. I fall into this category of mutants along with about 1,200 other CF patients in the U.S. There are only 3,000 of us on planet Earth.

The pressure of having a price tag of $300,000 a year on your head invokes some existential questions: Is my life worth $300k a year? Without insurance, if I fall ill, will my family go bankrupt trying to keep me alive? As Congress prepares to kill the Affordable Health-Care Act, I may soon get real answers to these questions, whether I like it or not.

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

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.

The only way compassionate advanced health care will work is if everyone contributes. This requires Americans coming together. The Republicans who vehemently defend the “sanctity of human life,” are the same ones who are determined to repeal the ACA.

The political push to abolish the ACA is not an act of legislative prudence; it is one of spite. Somehow Republicans think that dismantling a law is commensurate to dismantling Obama’s legacy. They forget that Obama has the least to lose.

I am among the first generation of CF patients who even had a chance. For generations, CF patients have participated in clinical trails, risking everything—forgoing precious time, to make this a reality. For the sake of those who will follow us, don’t take this away. Though, individually, each of us will, this is a battle we cannot lose.

In the U.S. before the ACA, I could have been dropped at any moment. Even with the ACA I could lose coverage if my health-insurance company changes its policy. Kalydeco is one of the first drugs of its kind. The hope is that not just the science of this precision medicine, but also the success of the policy of making this orphan drug available will set a precedent. This drug can lead the way to other breakthroughs and to making precision drugs like Kalydeco available to all the patients it can help—and not just the ones who can afford it.

I am not looking for pity; it is the last thing I want. I realize that this may come across as dramatic, but it’s hard to convey what is at stake for millions of Americans. This new law the Republicans are trying to push through Congress is a matter of life and death for millions of people including me.

The reason I’m writing this is because I believe that health care is something that we should demand of the most advanced country on earth the same way that we demand of it protection.

The United States has a nationalized defense system. The result of that system is the most advanced military in human history. Sure, we draw from the private sector for innovation, but our military is nationalized. Our soldiers fight and die for our country, not for the private sector.

And so it blows my mind when the idea of nationalized health care is met with cries of “socialism.” There is genuine hatred for the idea, supported by no logic. We accept that our military’s primary purpose is to protect our citizens from harm. Why don’t we expect and demand the same of our health care on a national level?

I’ve spent more than a quarter of my life in former communist countries. I’ve lived in the aftermath of that corrosive system. I’ve watched societies try to recover from it. It doesn’t look like Canada.

The same conservatives who want to increase military spending balk at the idea of nationalized health care. And yet if we spent a fraction of what we spend on defending Americans from the threat of attack from another nation (which hasn’t happened since 1941) on defending our citizens from disease, our country would be transformed.

If the point of our military is to protect Americans, then we would save millions of American lives by investing in a national health-care system. This would protect and save far more Americans than any army ever could. That seems to me like the ultimate form of patriotism.

Some parts of this article were first published in USA Today on Feb. 28, 2017.