When my now adult daughter turned six: BAM. There it was, type 1 diabetes, something that would demand a lifetime of constant medical intervention, medications, and oversight until the cure. Back then it was just called type 1 diabetes. We didn’t call it a pre-existing condition.
The topic of pre-existing conditions is at the heart of the current congressional health care debate. The latest change to the GOP’s bill, called the MacArthur amendment after its author, Republican House member Tom MacArthur, would allow states to opt out of several key Obamacare insurance regulations that protect people with pre-existing conditions.
Some elected officials, like Mo Brooks (R-Alabama), have suggested that pre-existing conditions are a result of negligent behavior. In my daughter’s case, at least, it’s true. The first five years her life were filled with boozing, smoking, street fights, back alley dice games, some cock fighting and gosh knows what else. No wonder she’s saddled — since her sixth birthday — with a pre-existing condition! Shame on her.
You know I’m joking, right? And it sounds ridiculous, right? But here’s the thing that’s no joke:
People with pre-existing conditions are terrified. In the hands of a very rocky Congress, access to the medical support we need to stay alive is at risk of being ripped away from us.
What we need on our side, many have thought, is a hero.
In steps JDRF.
The largest non-government diabetes research organization in the world, JDRF is also something else: A courageous powerhouse of an advocacy group on Capitol Hill. Back in the early 2000’s when stem cell research was new to the public – and something that few understood – JDRF stepped up, becoming a leader in education and advocacy around that research. Within a few years, nearly 90 percent of Americans supported it. Today, the research is legal.
Now, here we sit in another difficult political time, and JDRF is again taking a stand. Derek Rapp, President and Chief Executive Officer of JDRF, has issued a statement opposing the MacArthur Amendment. He said, “JDRF is deeply concerned with the MacArthur Amendment to HR 1628, the American Health Care Act (AHCA). JDRF opposes its passage because the amendment could jeopardize the insurance coverage that people with T1D rely on to live healthy lives.”
I applaud Mr. Rapp’s statement, and it brings me to thinking about the man who really got the nation thinking about health care and the wildly unfair way we provide it: the late Senator Edward Kennedy. Kennedy, a friend of my daughter’s (and mine), often told the story of the moment he realized something had to be done about health care in America.
He was in Boston Hospital, sitting 24/7 at the bedside of his son and namesake, who’d been struck with cancer and lost a leg to it. There he was with is son, and his son’s pre-existing condition. But that’s not what moved him to choose his life mission. Rather, it was everyone else on the hospital floor. He walked the halls and nodded at other parents, some who clearly were needy, and he thought to himself: Why should my son get whatever he needs to beat this and live well, and others not? How is that right? How is that reflective of the nation we want to be? Kennedy fought until his dying day for the rest of the pre-existing conditions out there.
I’ve thought a lot about him recently. How if he were alive, he’d laugh at my joke about my daughter’s wild ways as a toddler that “led to her pre-existing condition.” Yes, he’d laugh, but then he’d speak out, loud, unabashed, and sure of what he saw as right.