Tuesday, September 21, 2010

Funding inequality revisited

Alzheimers families are complaining about getting ONLY $437M a year in govt research funding.  CFS averages about $4M a year from the govt.  I think patient research funding may exceed govt funding.
Our disease is contagious, a retrovirus, meaning that unlike Alz, anyone could be the next person to get it.  Ours also strikes down people in the prime of life -- not 10 years of caregiving at an age where they're getting retirement benefits to support themselves, but sometimes 40 or 50 years of caregiving and the loss of what should be our prime earning years, and most being denied government benefits so having "no visible means of support".
"the U.S. government annually spends $6 billion on cancer research, $4 billion on heart disease research, approximately $3 billion on HIV/AIDS, which he says are all good investments and have led to lives being saved. However, when it comes to Alzheimer's research, Johns notes that funding by the National Institutes of Health is only $469 million per year"
If you're motivated to make a comment on that article, here are the statistics you need:
Sorry, those were the most recent numbers that were available in December 2008 when that blog post was written, but little has changed since then.  Doesn't matter that we now have XMRV or HGRV or HGRAD or whatever they're calling it nowadays, we're still not getting anywhere near as much funding as that other retrovirus, AIDS, or any other major disease; we're still down there with the "rare diseases" that strike only a couple hundred people in the world.
And that's not going to change until we get the general public involved -- people who are afraid that they're going to catch this horrid disease and start screaming at the government to find something to prevent it.  Those of us who already have it appear to be invisible to the government. 
And if you haven't read "Osler's Web" by Hillary Johnson yet, please do so soon.  That tells the whole sordid story of the cover-up.  Activists are now starting to use terms like "violation of human rights" and consult with lawyers on whether there's something to be done.
I was in the second wave of patients -- the first wave was in 1984 and I got sick in February 1987 -- so I probably don't have a good claim that they could've stopped it before it got to me because there wasn't a lot of research time available in the interim to find something so complex. 
But someone who got sick AFTER Elaine DeFreitas found a virus which CDC (intentionally) "couldn't replicate" in the 1990s, or who got sick from a blood transfusion, might actually have a decent case.

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