Tuesday, July 7, 2009

Healthcare Summit

Last night, one of our local Congressman hosted a "Healthcare Summit."

The focus of the summit was a panel discussion featuring representatives from state agencies, the healthcare, business, and not for profit sectors to get their feedback on the pending healthcare legislation and their thoughts on the issue. The general public was invited to the event and was able to participate in a question and answer session following the roundtable discussion.

I went along with our CFF staff! We also had a member from our CFF board. We had submitted a few questions via email (as requested) prior to the event; but of course they didn't get around to our questions.

As you know, there is currently no governmental funding for CF! In addition (this was new to me), families and individuals with CF who are on SSI, are not allowed to participate in CF clinical trials. Right now, this is a big focus of legislation, allowing these individuals to be able to participate in CF clinical trials. The CFF feels that if we can get this legislation passed, it will help lead to more funding for CF. Our (CFF) purpose or intended focus for attending this discussion was to ensure that research would continue. This Healthcare Reform Bill is not necessarily addresses the governmental funding aspect. However, we don't want funding to certain hospitals (which then fund our research centers) to be cut back because of having to provide access for healthcare coverage to every citizen. As one panelist mentioned, prevention is a key to controlling healthcare costs. And for the CF Community, prevention includes research and clinical trials.

The overall experience was very interesting. I'm not sure if it was that beneficial for the "CFF" to attend. I have taken an interest in healthcare and how the state and federal governments are involved within the last couple of years. Mainly because it greatly affects me personally, and I am also in the healthcare field for my career (HIM and Nursing). Healthcare Insurance Coverage is a big issue for CF patients and chronically ill patients. So it is definitely interesting to see what this new Healthcare Reform Bill entailed. The U.S. Congress and Senate will be voting on this Health Reform Bill in August. And this Healthcare Summit (or debate/discussion) was to allow our Congressman to listen to "his people" and their opinions on the legislation. This particular Congressman is on several healthcare reform committees, including the House Ways and Means Committee (which has tax-writing powers) a vote in the new legislation and overall a very big pull in our nation's healthcare.

I can't say I disagree with everything in this proposed legislation, but I can't say that I agree with everything either. There are some good aspects of it and some not-so-good aspects. As most CFers know, universal healthcare coverage is NOT good for us or for chronically-ill patients (including post-transplant patients like myself). While I want everyone to have access to healthcare coverage, I am also concerned for myself and want what is best for me as well as the CF Community. And that's very hard. It's very hard to know where you stand on every healthcare issue; and it's hard to "not want" something because it will directly affect you (or me) in a not-so-good way, but might help others. A lot of the information discussed was WAY over my head. But a lot of it was not; and I feel like I understood the gist of the legislation and discussion. I'm not going to go into major details....but one point that the legislation (or Healthcare Reform Bill) addresses is that Insurance Companies can no longer deny coverage to someone based on his or her healthcare status. This is huge for me personally and for CF patients. Probably the biggest debate of this Reform Bill is a "public option (or plan)." And over the next 3 weeks, the House will be discussing that in Washington. Right now, this proposed Healthcare Reform Bill is to be voted on by August 13 (I believe). I recommend you looking into this legislation and contacting your Representative if possible to voice your opinion.

The challenge, according to this Congressman, is figuring out how to expand coverage, contain costs and preserve choice for individuals. The "choice" for individuals is what will move us toward or forward to a universal healthcare system, according to several panelists at this discussion. Now, this Healthcare Reform Bill is NOT all about Universal coverage, but does address providing access to all individuals by some way or another (not necessarily via the public sector). This bill is 850 pages long and address a lot more specific topics (but in reality, all related to healthcare coverage access).

Sorry for the long post. I really do have a high interest in this topic and want to stand up for myself as well as the CF Community. People die from CF because they don't have healthcare coverage or insurance. It's a scary topic. If we eventually move to a Universal healthcare system, that could technically put my health in jeopardy as well as many other chronically-ill patients. So I really encourage you to take interest in this issue and voice your opinion! I'm so glad I attended this event. In August, myself, two CF researchers/doctors, and a few of our CFF staff will be meeting with this particular Congressman to discuss healthcare coverage, funding, etc., directly related to CF.


SWelch said...

I totally agree. This is such a huge issue. Everyone should be interested in! Not just sick people. The way things are today, health is not promised. You could be healthy one day and find yourself among the sick the next. Bringing up SSI though, I have an issue with that. First I think it is important to work if at all possible with CF. However I do not understand why if you get married you lose your check. I was married once before and kept my check, but this time have not been as lucky. They base it off your household income, which I get. What confuses me is, I still have CF no matter if I am married or not. My condition has not changed. So it confuses me why they base it on your income, when instead it should truly be based on the fact if you can work or not. Some people get a check that could work if they wanted to. However some CFs and a lot of CFs at that, actually cannot physically work. I feel like being sick has raped me of so many things in my life. Being married is not something I want to add to the list. I want to be normal. I want to be a mother and a wife despite my illness. It just isn't fair that the government is making us choose between money and marriage. It isn't right to have to fly out of the country to be married so you aren't "legal" in the U.S. I knew what I was up against when I got married, losing my check also meant losing my insurance. I was lucky enough that my husband has insurance that I can get on and the check though it helped was not my sole income. However many CFs are living at poverty stricken states because that is all they have. It just seems unjust to me. I don't know. Okay this comment turned out to be a novel! Sorry!! =)

NoExcuses said...

Great post.

here's the bottomline: compare life expectancy ages in the US vs. socialized medicine countries.

you are right on - socialized medicine is not good for those with chronic/rare diseases. the #s don't lie!

Somer Love said...

wow thanks for posting this it was very interesting. I am interested to hear how your meeting goes in Aug. Keep us posted.