Two weeks ago now Donna and I attended the public information meeting for the National Heart, Lung and Blood Institute. It was the first time I’d attended this meeting and Donna was showing me the ropes.
It was two days packed full of information, but several things stood out in my mind that I’ll share here.
The first day the official meeting didn’t start until evening, however, the lung disease groups got together for about six hours beforehand to discuss issues of mutual interest. This might not be a fair conclusion, but I have the impression the lung disease patient advocacy groups work together far more closely and in an organized manner than patient advocacy groups in other parts of medicine. I think this might partly be because of the power in unification they’ve found as part of the public advisory roundtable of the American Thoracic Society. ATS deserves a lot of kudos for being so open to patient advocacy involvement in what otherwise is a closed club of doctors and researchers. It has benefited the patient groups greatly, and I think ATS as well.
At this meeting we heard from one of the lobbyists that works on behalf of the ATS on Capitol Hill. It was very interesting to hear what she had to say about the health care reform efforts. Essentially, the challenge is that even though this reform is supposed to make its way through the system this summer, there seems to be an amazing lack of detail on the part of anyone’s plan. That is especially concerning to me and makes it impossible for me (personally and not as part of the Network) to make a decision about which plan would be best.
One of the planks of one of the plans refers to setting up a health care safety net for the “disabled and chronically ill elderly.” What does that mean? Who decides who is disabled? If you’re chronically ill but not elderly does that make you disabled? So many questions that remain unanswered – it’s hard to know what to support.
Personally, I am convinced both that we need a public or government component to whatever is decided. At the same time, I also think industry can and should play a role.
While my politics run left of center (at least in Kansas anyway), my dad is a conservative through and through. We have friendly arguments all the time. He doesn’t trust the government to manage anything well, and I can’t say that this opinion isn’t based on some well-founded concerns. On the other hand, industry has done a poor job of managing patients like me thus far. The reality is I’m never going to be profitable for an insurance company. It bothers me that the people responsible for my care as someone with a chronic illness have a profit motive to not give me the best possible care. That’s a problem. But I’m not the average 36-year-old either and the average healthy 36-year-old can likely find their health care needs adequately met in the private sector.
There just isn’t going to be a one-size-fits-all solution to all of this.
I have some other observations from the meetings, but I want to post them separately.
It was two days packed full of information, but several things stood out in my mind that I’ll share here.
The first day the official meeting didn’t start until evening, however, the lung disease groups got together for about six hours beforehand to discuss issues of mutual interest. This might not be a fair conclusion, but I have the impression the lung disease patient advocacy groups work together far more closely and in an organized manner than patient advocacy groups in other parts of medicine. I think this might partly be because of the power in unification they’ve found as part of the public advisory roundtable of the American Thoracic Society. ATS deserves a lot of kudos for being so open to patient advocacy involvement in what otherwise is a closed club of doctors and researchers. It has benefited the patient groups greatly, and I think ATS as well.
At this meeting we heard from one of the lobbyists that works on behalf of the ATS on Capitol Hill. It was very interesting to hear what she had to say about the health care reform efforts. Essentially, the challenge is that even though this reform is supposed to make its way through the system this summer, there seems to be an amazing lack of detail on the part of anyone’s plan. That is especially concerning to me and makes it impossible for me (personally and not as part of the Network) to make a decision about which plan would be best.
One of the planks of one of the plans refers to setting up a health care safety net for the “disabled and chronically ill elderly.” What does that mean? Who decides who is disabled? If you’re chronically ill but not elderly does that make you disabled? So many questions that remain unanswered – it’s hard to know what to support.
Personally, I am convinced both that we need a public or government component to whatever is decided. At the same time, I also think industry can and should play a role.
While my politics run left of center (at least in Kansas anyway), my dad is a conservative through and through. We have friendly arguments all the time. He doesn’t trust the government to manage anything well, and I can’t say that this opinion isn’t based on some well-founded concerns. On the other hand, industry has done a poor job of managing patients like me thus far. The reality is I’m never going to be profitable for an insurance company. It bothers me that the people responsible for my care as someone with a chronic illness have a profit motive to not give me the best possible care. That’s a problem. But I’m not the average 36-year-old either and the average healthy 36-year-old can likely find their health care needs adequately met in the private sector.
There just isn’t going to be a one-size-fits-all solution to all of this.
I have some other observations from the meetings, but I want to post them separately.
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