Why patients don’t get heard
Thursday, June 18 2009
If you want a case study in why patients get ignored in the debate over health care, you need look no further than the Crohn’s and Colitis Foundation of America’s advocacy efforts.
Right now, elected officials, bureacrats, insurers, pharmaceutical makers, lobbyists, employers, doctors, hospitals, and many others are hammering out the rules that will govern the lives of sick people for the next twenty years (or more). This is already a big table, with lots of stakeholders seated; you would think a patient advocacy organization would be damn sure to get their own seat. So where does CCFA focus its advocacy?
We need your help to advocate for passage of the IBD Research and Awareness Act and to address the needs of the 1.4 million Americans with IBD. Please contact your legislators now and ask them to cosponsor H.R. 2275 (House bill number) and S. 981 (Senate bill number).
S. 981 really only does two things. First, it allots $1.5 million towards an epidemiology program, with no further specified amount for research. Compare that to the nearly $6 billion Johnson & Johnson earned on Remicade just last year – or the more than $1 trillion at stake in health care reform.
Second, S. 981 allots an unspecified amount of funding for awareness programs by patient organizations – which means the CCFA. Have you seen the purple bracelets CCFA wants you to wear? Apparently, they want taxpayers to pay for them. When the CCFA says it’s “advocating” for patients, what that really means is they are begging for government dollars, meanwhile ignoring the most consequential health care legislation in decades.
I pick on the CCFA because I have Crohn’s; I’m one of the people they’re supposed to be helping. But they’re not helping, and I fear this is all too common among patient organizations. Maybe your org is better, but my sense is that patients’ interests are being ignored in this process because our organizations are ignoring the process. If you’re a member of one of these organizations, are they doing anything to make sure your voice is heard on this issue?
Thanks for the link! I contemplated replying to the article, but it has so many comments that mine would be lost among all others, so I’m just going to comment in here – your readers might be interested.
I have ulcerative colitis. It was diagnosed just two years ago, but for the last 10 years or so I had a flare each spring with the exception of the three springs when I was pregnant or right after having a baby. After a difficult flare that seemed to never go away, I got better instantly as soon as I got pregnant. It looks like for me the best treatment for ulcerative colitis is to be pregnant. I know this is anecdotal.
Just hoping this might help someone decide to get pregnant if their worry is the colitis.