When your president would prefer you dead

When President Barack Obama managed to get the Affordable Care Act (also known as Obamacare) passed in 2009, I was too young and too privileged to understand the magnitude of the reform. My parents have blessed me with excellent (albeit expensive) health insurance, and I’ve never had to miss a cystic fibrosis medication, hospitalization or treatment due to lack of funds.

My father is a lawyer. Any time Blue Cross denied a medication, he got on the phone and barraged them with calls, challenging the notion that someone who works at an insurance company could better understand what’s “medically necessary” for a terminally ill child than that child’s own doctors. Time and again, we managed to overturn decisions my insurance company made that would have negatively impacted my health.

Cystic fibrosis, as many of you know, is a deadly disease. Yes, progress is being made. Yes, the life span has radically improved in the last twenty years. Yes, some cases are milder than others. But the fact remains that the vast majority of CF patients die of respiratory failure or other complications of CF — not old age, not heart disease, and usually not cancer, unless that cancer is a comorbidity of CF (such as colon cancer).

Cystic fibrosis is one of the most difficult diseases to manage out there. Daily medical regimens require hours: airway clearance, aerosolized medications, dozens and dozens of pills. Over time, as the disease progresses, medical regimens get more extensive; the number of hospitalizations per year increases; the costs become astronomical.

One time, I opened a piece of mail that came to our house. There were about 100 pages of bills from my most recent hospitalizations. I am hospitalized five to ten times a year, on average. Each hospitalization runs from $100,000 to $300,000; my annual hospitalization costs are about $1.2 million. That doesn’t even include the cost of medications.

My pulmozyme (a medication that thins mucus) costs $10,000 a month. Marinol, a drug to stimulate my appetite and reduce nausea, is $500 a month. Those are just two drugs; I take 41 medications daily. The newest cystic fibrosis drugs, those that work on underlying genetic mutations, run anywhere from $250,000 to $350,000 a year. Those drugs radically improve life span and quality of life, but they can’t do their job if patients can’t afford them and insurance companies won’t cover them.

And now, I’m listed for lung transplant. Not only do I take those 41 medications, but also use durable medical equipment (like oxygen concentrators), home health services, and multiple IV antibiotics around the clock. Those costs are high enough, without considering the cost of a lung transplant surgery itself: the estimated total billing for a double-lung transplant in 2011 was $797, 300, according to The United Network for Organ Sharing (UNOS).

The Affordable Care Act is instrumental in keeping cystic fibrosis patients alive, for many reasons. It allows CF patients to stay on their parents’ insurance until the age of 26. It prohibits insurance companies from refusing to cover those with preexisting conditions. It eliminates lifetime caps (a total lifetime dollar limit on benefits, which for most CF patients would cover about three years of care). It increases funding for Medicaid, which almost 45% of cystic fibrosis patients use for coverage since most of us can’t work full-time. The individual mandate requires that everyone buy into the insurance market, which reduces premiums for everyone; the concept of health insurance only works if healthy people buy in too. If it’s only sick people, costs will stay astronomical.

Repealing Obamacare leaves those with genetic (and other) illnesses hanging out to dry — or rather, die. And Senator Mitch McConnell’s bill, which was devised by a group of wealthy white men behind closed doors, would reinstate lifetime caps, let healthy folks off the hook by eliminating the individual mandate (raising costs for the sick), and slash Medicaid and Medicare funding.

“A referendum on my existence”

Now, the Senate is voting on whether to repeal Obamacare without replacing it. And John McCain, who was recently diagnosed with brain cancer, has been a media darling and a media villain in the last few days, depending on whose opinion you ask. But liberals, let’s not villainize Mccain just yet. Sure, the man is privileged to have health care to cover his brain cancer treatments. And yes, he voted to move forward with debate to potentially repeal Obamacare. But he did also say, unequivocally, that he would NOT vote for the Senate’s version of Trumpcare in its current form. It remains to be seen whether he will vote to strip away the futures of the chronically ill, but let’s withhold judgment until he does or doesn’t.

Meanwhile, let’s applaud a Senator who is fighting stage IV kidney cancer, Hawaii Senator Mazie Hirono. Since May, she has undergone multiple surgeries, yet she still made it in to vote NO on repealing Obamacare (a vote she says was influenced by her own battle with cancer).

“No one should have to worry about whether they can afford the healthcare that one day might save their life,” Hirono said. “Healthcare is personal, and it is a right, not a privilege reserved only for those who can afford it.”

For those who disagree, who think that healthcare is a scarce resource and should be reserved for those who can pay full-price, I’m guessing you are lucky enough to be healthy. And I’m talking to you. If you received a diagnosis of stage IV cancer tomorrow — or, if your son, daughter, mother, father, or spouse did — your opinion would change so fast you’d get whiplash. It’s easy to leave people to die that you don’t know and don’t love, just to save a buck; though I would never wish illness on anyone, I hope you can learn to have some empathy for those who, like me, were not blessed with genetic superiority.

I would urge those who are on the fence about healthcare reform to get educated. You never know when it will be someone in your own family hit with a deadly diagnosis. Dig deep and find your humanity. If we could all agree to share the financial burden of disease (by keeping Obamacare, and especially the individual mandate), those who do get sick will have a fighting chance.

According to the Congressional Budget Office, 32 million people will lose coverage under the Senate’s version of Trumpcare. Don’t pick now as the time to be silent.

I’ll go so far as to say that allowing the Senate’s legislation to go through is akin to eugenics: Let the poor die, let the sick die, so that we can all save a few bucks on our taxes. That’s not the America I want to live in, and it disgusts me that so many people do.

Will Cathcart, a 34-year-old living with cystic fibrosis, explained in an article for CNN, “None of this is personal, and yet the repeal debate is a referendum on my existence.” It is on mine too, Will. Let’s kick McConnell’s fucked up, unethical, and downright cruel legislation to the curb, for good.

UPDATE: In the time I wrote this piece, the Senate rejected a full Obamacare repeal without replacement. Now, the GOP might try to pass a “skinny repeal,” which would get rid of ACA mandates and some of the taxes. “The failure crystallized the new reality for Republicans: more than seven years after the enactment of Obamacare, there is growing recognition within the GOP that a straight repeal of the law is not viable,” wrote CNN journalists. PHEW. But still, it’s not time to rest. We’re not safe yet.