The closer we inch towards the dismantling of the Patient Protection and Affordable Care Act, otherwise known as Obamacare, the more I remember a young woman I met around the time that health reform legislation was becoming law. Her name was Devin Pate.
It’s why I’ve long supported the law even more than I support the man it is named after.
Devin had two parents who loved her, each of whom worked long hours to pay the usual monthly bills. They fell squarely in the much-discussed white working class that received so much attention during this past election cycle.
Devin worked, too. And she was on scholarship at the College of Charleston in South Carolina until a tumor the size of a Butterball turkey grew inside her — and returned, along with other tumors, after it was removed and cancerous cells (and some healthy ones) were killed off by the chemicals pumped into her veins to try to make her well.
She suffered from a rare cancer called Gardner syndrome. And no matter how many times she had an upset stomach or saw her hair fall out or how weak she grew, she felt obligated to keep her part-time job even after she was forced to leave school, which meant no more scholarship — which triggered a quirk in her parents’ health care coverage that exposed her family to an ungodly sum of medical bills they couldn’t possibly pay.
And for too long during the final months of her life, she had to worry about becoming a financial burden on her mother, not wanting to be the reason they couldn’t make ends meet, even though she needed every ounce of the energy she could muster to try to get better.
When the disease was finally too much for her 21-year-old body, and life left her on Thanksgiving weekend two years after we met, her loved ones saying their final goodbyes in a hospital room, Obamacare’s initial provisions had only just begun to take hold. So this isn’t a tale about how Obamacare saved Devin, because it didn’t, and couldn’t, even though it surely has saved tens of thousands of Americans.
House Speaker Paul Ryan didn’t know Devin. But he did come face-to-face Thursday with a man whose life was saved by Obamacare. If Ryan is serious about making things better, not worse, if his goal is an improved health care system, not just naked partisan political point-scoring, he wouldn’t dare repeal that law without a documented replacement that would pass at the same time. To do otherwise would be to literally toy with the lives of thousands of Americans, like the man he faced during that CNN town hall.
The politics are treacherous for health reform in the best of times, with a popular president. These are not those times.
Neither is this about Obama and his legacy or how Obamacare fits into that narrative. I’m frustrated that the Republican Party, which has been claiming for years it would “repeal and replace” the health reform law with something better, seems eager to repeal even though it could pull the rug from under at least 20 million Americans who have health insurance because of it, and tens of millions more who have benefitted in ways they don’t even realize. But this is not about that, either.
It’s confounding to see the reports of people who rely upon the health care law who voted for Donald Trump and Republicans anyway, either believing the GOP and the new president wouldn’t dare pull the rug from under them or that their particular Obamacare plans weren’t really Obamacare. That’s an interesting piece of data in the debate over health reform but is not the most important thing.
And it is disconcerting that so few people seem to realize that the law, while it got no Republican votes, was built upon a Republican platform from the mid-1990s that was negotiated over the course of several months by a bipartisan six-person committee in the Senate, not a radical liberal takeover of our health care, as it has been falsely described too frequently.
But my memory of Devin is more important than all of that. I can’t forget her because, for the life of me, I don’t get why it is OK for a family like hers — in the richest country the world has ever known — to have to suffer unnecessarily, to have to stress about how best to balance keeping a roof over their heads while praying good health would return to their daughter.
There are a thousand different ways to illustrate injustice. I know that Devin suffered one during the final years of her life for no good reason, and that it happens to too many Americans, and that as long as health reform remains a political football, that injustice will repeat itself the way cancer cells kept multiplying inside Devin until her body could take no more.