I suspect that some of you may have wondered where my head is on health care this year. Sorry for the delay, but it has taken me until now to be ready. I don’t like to mess with politics. And even though I have private insurance today, this is really very personally important. I don’t often get truly angry, but there have been a couple of moments of rage during the discussions this year that are very much about me and my fear about what’s ahead.
Type 1 is a pre-existing condition. It’s also an auto-immune disease that cannot be prevented and has nothing (ever) to do with lifestyle choices. Prior to passage of the ACA, it made patients uninsurable, or made it so that they needed to pay gigantic premiums and deductibles that were out of reach for many. Fortunately that hasn’t affected me yet. I’ve never received Medicaid and I don’t get my insurance through the ACA. For the last 20 years I’ve been covered through employer plans and before that I was in school for so long that I made it almost to 26 on my parents’ plan. I don’t expect to always have insurance through work because like most of you, I hope to retire one day. But no matter how much I sock away into my 401k, I don’t know how or when that will be possible. Depending on what happens in our government, I could become uninsurable. Or insurable at a cost that makes insurance a near impossibility. Here’s the catch: I’m healthier than most people I know. I’m healthy, but I have a disability (did you know that?). I’m sick, but I rarely miss a day of work for as much as a cold. I didn’t cause this, but there are politicians and others who would tell me that I’m in this situation because I haven’t taken responsibility for my health. How does that make sense?
From my perspective I’m no more deserving of medical care than a single mother working for minimum wage to support her family. I’m also no less deserving of medical care than someone who brings home a million dollars a year. I didn’t cause this, I couldn’t have prevented it, and there’s no way to make it go away. I’m not asking for anything free. I’m asking for the same unalienable right to “life, liberty and the pursuit of happiness” that applies to everyone else. To all of us, not just those who were lucky enough to be gifted with perfect health. If you were, enjoy it because you never know what will come tomorrow for you, your family or your closest friends. And then what? What happens when you realize that you probably should have known to chose a career paying 2 or 3 or 10 times what you always thought was enough? It’s a terrifying prospect for people like me because without insulin, I’ll lose my life. That’s not a hypothetical, that’s an inevitability that comes down to a matter of days or weeks. It terrifies me to think of kids with T1D, or cancer, or anything else, who were diagnosed before responsibility was a word in their vocabulary but could wind up uninsurable. I don’t have the solutions and I don’t claim to. But there has to be a better answer. When you hear the debates about health care, think about all of the people closest to you in life. Then think about whether or not they’ve made it this far without being diagnosed with something. You may realize you don’t know many with that kind of luck.
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Below are some of the quotes that have been distributed within the T1 community about health care and/or diabetes in the U.S. (all underlined emphasis has been added by me):
- From Alabama Representative Mo Brooks in a May 1 interview on CNN, the ACHA that was debated earlier this year would “allow insurance companies to require people who have higher healthcare costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people who have done things the right way that are seeing their costs skyrocketing.”
- I’m a good person, I’ve done many things to stay healthy, and I still got sick. I promise you my costs have skyrocketed from where they were 5 years ago but I didn't cause that.
- From Vice President Mike Pence in a Tweet on June 24: “…we’ll repeal/replace Obamacare w/ system based on personal responsibility, free-market competition & state-based reform.” He subsequently tweeted, also on 6/24: “That’s the Republican way. That’s the American way. And, that’s the way we’re going to reform health care in the 21st century.”
- I take a great deal of responsibility for myself and my health and my life. I wish Vice President Pence supported a health care plan that would insure me.
- On June 28, Iowa Senator Thomas A. Greene commented on a Des Moines Register Facebook post about the high cost of insulin saying “Most patients diagnosed with diabetes can control their onset with proper diet, exercise, and weight control. If that fails, then generic medications are next. Personal responsibility is the 1st step.” When commenters responded to the senator clarifying that type 1 diabetes is not a lifestyle disease, the senator responded “I’m a Pharmacist (sic), I know the facts. I practice in retail pharmacy. I see the patients everyday (sic).”
- This is just another example of the ignorance about Type 1 (and often) Type 2 diabetes. Not only can I not control my disease with diet or exercise, there’s no such thing as generic insulin. And again…I’m taking plenty of responsibility for my own health. Why do we keep blaming people for their diseases?
- From Fox contributor Brit Hume: “If you want to be one of us, you have to carry your own weight and take care of yourself. You do that by being careful about what you eat, how you spend your time and how you conduct yourself every single minute of every single day. If you’re at a point where you’re both poor and you get sick, it’s your own fault. Nobody made you sick out of nowhere. You’re the only person responsible, you did that to yourself by not taking care of your health. And if you aren’t willing to take the time and effort to pay attention to the choices you make every single day of your life, why should the government?
- I take great care of myself, sir. And I got sick out of nowhere. I guess if I combined that with being poor you’d tell me I don’t deserve insulin.
- From President Trump, talking about Supreme Court Justices he expects to replace during his presidency: "Sotomayor," Trump said, referring to the relatively recently-appointed Obama justice, whose name is rarely, if ever, mentioned in speculation about the next justice to be replaced. "Her health," Trump explained. "No good. Diabetes."
- I’m sure you can imagine how much I disagree with this statement. Rather than discuss it I’ll give you this link to a story about Justice Sotomayor talking to a group of Type 1 kids several years ago and telling them about her experience growing up and living life with T1. She's the 3rd woman appointed to the Supreme Court and was diagnosed with T1D when she was 7 years old.
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