It struck me as normal, somehow, to watch my girlfriend enter an online sweepstakes that would help decide whether or not she would be able to afford to buy medicine. Only now, watching the Republican establishment dismantle the Affordable Care Act, has this struck me as cruel. I don't remember the specifics of the promotion, but I remember that it was a monthly trivia contest run by an online cystic fibrosis pharmacy. Answer the questions right, and your name was entered to receive $500 toward your meds. I'd ask Katelin about it now, but she is dead.
The Republican plan to repeal Obamacare and replace it with something that offers more "choice" has inspired thousands of people to confront lawmakers with their stories about how the law—and health insurance more generally—has saved their lives or prevented financial ruin. Their courage should be applauded, their voices amplified.
We should remember, though, that we are hearing from the fortunate ones. The ones who were repeatedly fucked by insurance companies before Obamacare? They are dead.
If Jason Chaffetz, Paul Ryan, and Donald Trump want to offer Americans more healthcare choice, they're on the right track. Obamacare closed many of the loopholes insurance companies used to keep the chronically ill from purchasing coverage, but any system that treats healthcare as a luxury rather than a basic human need is going to afford people plenty of options as their insurance lapses or benefits are suddenly changed.
Katelin was afforded the choice to do fewer breathing treatments to preserve her medicine until her insurance company would pay for more. For a few months, she made the choice to take generic nebulized albuterol because she couldn't afford the more effective Xopenex out of pocket. She had regular battles with her insurance company about when it was appropriate to refill her prescription for digestive enzymes, which she needed to take in order to eat almost anything. She chose to enter insane online sweepstakes to pay for medicine and wake up before dawn to ride multiple buses to get to work on time and to act in plays.
Three years after she died, I cannot piece together a timeline of when she had coverage, when she did not, and the varying quality of that coverage. There were times when she had excellent doctors and excellent insurance, and times when she had next to nothing thanks to a clerical error or benefits changes.
I was pissed off at her genes, not at her insurance companies, our politicians, or the system that had continually made clear it'd rather not help keep her alive
What I do know, though, is that she was constantly engaged in some bureaucratic battle about whether she was allowed to buy medicine, go to the doctor, or refill a prescription. About whether she should be allowed to live. A pre-Obamacare study found that lack of health insurance killed roughly 45,000 Americans annually. A study published Monday found that Canadians with cystic fibrosis have a life expectancy of roughly 10 years longer than Americans with CF. The discrepancy is attributed to Canada's universal healthcare.
Somehow, through all of this, most people didn't know that Katelin was sick, that she had been sick since the day she was born, and that she was slowly getting weaker because skipped treatments were beginning to take a toll on her lungs.
I was too young, maybe, to realize that the contests, the paperwork, the compromises were unjust. I was pissed off at her genes, not at her insurance companies, our politicians, or the system that had continually made clear it'd rather not help keep her alive. No more. Katelin lost the genetic lottery, but she is dead because of a health system and country that refuses to take care of our most vulnerable.
It's too early to say whether Katelin would have been able to buy health insurance under the GOP's plan and what quality of coverage she would have gotten. Though the plan promises to protect those with pre-existing conditions, experts say the lack of an individual mandate means that there's no mechanism for healthy people to subsidize the care of the sick. And it has been made abundantly clear that the Republican plan will protect fewer people than Obamacare..
As I watch America again debate if we should take care of our sick, the stories of those whose lives have been saved by Obamacare serve as a powerful counterbalance to politicians who would cut taxes for the rich by any means necessary. Remember, though, the people who are no longer here to speak for themselves.