Monday, October 22, 2012

Hey CF, The 1980s Called...

They want their diagnosis back.

For those of you who don't know yet, I'm 30 (nearly 31!) and I was diagnosed with CF at six weeks old -- way back in 1981. It's a diagnosis that I share with about 29,999 other people in this country, people who are rich and poor, young and middle-aged (yay!), religious and atheist and everywhere in between, and people who are conservative and liberal alike. CF doesn't discriminate and it doesn't pick sides. That means when it comes to fighting this deadly disease, we're kind of stuck with a mixed bag of people -- heck, even our awesome Congressional CF Caucus is a bipartisan effort. And you know what? I wouldn't have it any other way.

Having CF and living with it for 30 years does not in ANY way, shape, or form make me a spokesperson for the CF community. That said, the experience of doing so -- especially when combined with the "fun" of attending law school -- has, I think, made me pretty aware of some of the problems with the healthcare system in this country. The views in this and every blogpost authored by me are mine and mine alone. They are my OPINIONS. And before I even begin this discussion, let me say that I know for a fact that Gov. Romney is a friend to the CF community. Don't believe it? Feel free to check out this link, just as an example. Now, enough with the disclaimers already.

If you watched the debate, you may have seen Gov. Romney's statement that we don't "absolutely need" healthcare reform (slightly out of context there -- what I believe he meant was that we don't "need" all aspects of the recently passed health care bill). You might also have heard him say that there are states doing a fabulous job of administering medicaid, states like, oh, I don't know...Arizona?

And that's when I literally spit water into my lap.

I don't want this blog to be political, but I do want it to be honest. And my honest opinion, folks, is that calling out Arizona for successful management of medicaid for disabled and indigent citizens is, to put it mildly: a load. of. crap. There, I said.

In October of 2010, Arizona decided to stop funding lung transplants for ANY of the approximately 100 people on their medicaid rolls who desperately needed them (see, e.g., this article). None. Zero. Nada. Among the affected people was at least one young woman with cystic fibrosis who had, in fact, worked as a basketball coach prior to her slide into lung failure. The 27-year-old woman, Tiffany, was waiting on lungs for end-stage CF when the change took hold, cutting off her ability to pay for the admittedly pricey surgery. You can read her story here because she was brave enough to share it.

The state of Arizona justified this change by saying lung transplant was too risky; basically, the survival rate as compared to those who did not get the surgery was too low to justify the cost. (They also denied liver transplant coverage for Hep C patients because of a claim that the disease had a 100% recurrence rate.) Doctors and later lawmakers claimed the state was acting on faulty, outdated information. Regardless, the situation continued unchecked for several months, despite the controversy. Several months, guys. And as someone who has been through the lung transplant process, I can tell you that each day on the list feels like a year even when you know you CAN afford the surgery. Not cool, AZ. Not cool.

For the record, both lawmakers and lay people alike from both parties stepped up to rectify the situation, and funding was restored for transplant in April of 2011. Ms. Tate did receive her lungs.

Look, I get that Medicare and Medicaid are tough subjects, and often sore spots amongst the CF crowd. I get it because I've lived it. I've actually been personally struggling to come to grips with the fact that Medicare refuses to cover my admittedly necessary and LIFE-SAVING transplant drugs just because I used private insurance to cover my transplant, and thus saved the state hundreds of thousands of dollars. That doesn't make sense to me, either. But then again, that policy isn't being held out to the world as a "good example" of healthcare policy genius. The fact that Arizona's handling of Medicaid is...well, that just infuriates me, regardless of party.

You don't have to love the healthcare bill just because you have CF, any more than you have to vote for Romney just because you love dressage horses (as a personal aside: I fit into both categories). What I would ask is this: that as responsible people, citizens, and lifelong users of the healthcare system, that we do OUR OWN research into the issues that most affect our daily lives. Pay attention to what states are getting it "right" (whatever that means to you) and what policies you want to see put into action. It's almost impossible to know your candidate's position on every little issue out there in the political universe right now, but you should always know his/her position on the ones that matter most to you personally. And whether it's bayonets or lung transplant funding, never settle for less than the full story.

Happy voting, y'all.

1 comment:

  1. My husband lost his job just after I went on long term disability three years ago. Thankfully our insurance was with my employer. My employer's policy is to keep those of us on LTD as EE's and let us keep our healthcare coverage for ourselves and our dependants. We still are on their policy even after becoming Medicare eligible. Because of this my husband was able to start his own business and it is now a steady source of income. Note that we are EXTREMELY lucky and most people with CF are not in this situation.

    What if my employer was more typical? I would have been let go when my FMLA ran out. That would have only left us with COBRA. After COBRA ran out either we would have had two separate policies (one as a disable chronically ill person and one as a self-employed) with ridiculously high premiums or my husband would have to find another job offering good healthcare in a down economy.

    What does the Affordable Care Act have to do with all this? Well it levels the playing field. It means that eventually the insurance marketplace will be more fair. If your loved one is chronically ill you will not be forced to take a job just to have healthcare. You will be able to pursue the american dream, start your own company, and be able to cover your sick wife's health insurance for the same price as if she were well. Also, if at some point said wife has a transplant and wants to stop working, she can still find insurance even with a pre-existing condition and at a fair price.

    Great post Piper!