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Patient-Led Advocacy & Govt. Funding For Research


~Naomi~
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The sqeaky wheel gets the oil...

In “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy,” a paper published in the October issue of the American Sociological Review, Rachel Kahn Best analyzed data on 53 diseases over a 19-year period from 1989-2007. She found that those diseases tied to strong advocacy organizations received millions of dollars more in research funding over the period than others whose advocates were not as strong.

http://scienceblog.com/56900/patient-led-advocacy-has-changed-how-us-government-funds-medical-research/#4R3t02RbS4XPcDiY.99

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This makes good sense. Don't think Dysautonomia made the top 18. It is so difficult to build interest and awareness of our condition bc there is so little understanding of it in the general medical community not to mention the public. But, if we all did a little bit, working w docs in our areas to spread the word and sharing out stories with others maybe one day we could be toward the top of that list.

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No, we're definitely not at the top of the list or even ON the list. The thing is we have the numbers - it's hard to find good statistics (so don't quote me), but I've read there are at least 500,000 of us with POTS in the U.S. - more of us than are diagnosed with Multiple Sclerosis and about the same number as those diagnosed with Parkinson's. We need a voice - and like you said Kelly, if we all do our part, maybe one day we'll get there!

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I read a great blog article about this topic which I felt very inspired by. It gives more detail on the numbers and what can be done. Being sick all these years has left me feeling helpless - until recently- thanks to fellow Potsies trying to get things done. I don't think I'm allowed to post links to blogs here, but if anyone is interested in reading it, I think I can send info through PM.

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