Hefty numbers are piling up: we’ve cracked $1.6 billion in RFAs since October 2015, with $30 million being obligated just in the last week. Still nothing for ME/CFS.
But hey, NIH is “looking for funding” for ME/CFS initiatives. Imagine a multibillionaire – say, Bill Gates – patting his pockets and checking his wallet for money to help a beggar on the street. It would be hilarious if there were not real people suffering while NIH checks behind the cushions for loose change. For an agency with a $32 billion budget overall, and having just received $2 billion more than they requested from Congress, claiming they have to “find” the money is absurd.
In other news, FDA just announced it will provide $2 million for studies of the natural history of rare diseases. Unfortunately, none of this money can come our way as FDA is required by statute to define a rare disease as affecting less than 200,000 people in the United States.
It’s a sick joke, really. ME/CFS patients are too numerous for FDA to consider them “rare,” and yet NIH is “looking for money” in its vast budget to research a disease which costs our economy billions of dollars a year. Can someone let me know when the situation becomes rational and logical?
Meanwhile, here are your latest numbers:
- Total RFAs Issued by NIH: 149 (October 2015 to date)
- Total Dollars Committed to RFAs: $1,611,100,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 2/22/16 | 9 | $30,100,000 | Zero |
| 2/15/16 | 4 | $26,500,000 | Zero |
| 2/8/16 | 5 | $9,500,000 | Zero |
| 2/1/16 | 8 | $26,000,000 | Zero |
| 1/25/16 | 6 | $11,550,000 | Zero |
| 1/18/16 | 2 | $4,500,000 | Zero |
| 1/11/16 | 10 | $71,200,000 | Zero |
| 1/4/16 | 0 | $0 | Zero |
| 12/28/15 | 0 | $0 | Zero |
| 12/21/15 | 3 | $10,260,000 | Zero |
| 12/18/15 | 5 | $20,260,000 | Zero |
| 12/11/15 | 27 | $765,090,000 | Zero |
| 12/4/15 | 6 | $26,600,000 | Zero |
| 11/27/15 | 4 | $21,000,000 | Zero |
| 11/20/15 | 15 | $134,400,000 | Zero |
| 11/13/15 | 2 | $16,100,000 | Zero |
| 11/6/15 | 10 | $22,850,000 | Zero |
| 10/30/15 | 7 | $49,800,000 | Zero |
| 10/23/15 | 10 | $33,200,000 | Zero |
| 10/16/15 | 0 | $0 | Zero |
| 10/9/15 | 13 | $332,450,000 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
“If it was up to the NIH to cure polio through a centrally directed program… You’d have the best iron lung in the world but not a polio vaccine.”
— Samuel Broder, Former Director, National Cancer Institute
THIS is why we need RFAs and funding. Even if the NIH Intramural program were brilliantly designed and run, it could not take the place of funded, independent researchers trying new things and making breakthroughs. Probably no centrally directed program could.
YES. Excellent point, Joe.
So if NIH has obligated $1.6 billion for RFA’s already, that being about half of the 32 BILLION budget, does that mean they have already allocated half of the funding earmarked for RFA’s? Are we looking for loose change from pockets that are fast being depleted?
Not exactly. They’ve obligated $1.6 billion from the 2016 and from future years, so the whole 1.6 is not deducted from the $32 billion. But even if it were, that would still leave $30.4 billion in the budget. Most NIH spending is not done through RFAs.
Sick stuff, indeed!
FYI on a brighter note, those who have acquired symptoms indicative of forms of ME/CFS from tick bites (Lyme Disease), got a reprieve from the Feds last week. Federal agencies are no longer promoting that those claiming long term, debilitating illnesses are “Lyme Loonies”. FINALLY, the “nonprofit” Infectious Disease Society of America’s (IDSA) guidelines, which have caused the mass-discrimination of the environmentally disabled, have been removed from federally funded public policy/physician education.
http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2016/02/24/lyme-disease-treatments-guidelines-ngc/80805392/
There’s two ways to change policy for the sake of environmental public health. 1. Ask for federal funding to research for advancements in science. 2. Work to knock garbage science (that environmental illnesses are mental illnesses) out of policies by eliminating “flat earth” proponents from the research/physician education/funding game.
This “knock out” occurred just a little over a year ago in the mold community. While it hasn’t completely solved the problem (and no one’s been punished for the science fraud and criminal acts to cause it to continue for over the prior decade) — it’s aided to cause change for the better in policies and practices.
https://katysexposure.wordpress.com/2015/03/18/acoem-takes-down-position-paper-commonly-used-to-defend-against-mold-claims/
And last but not least, the ME/CFS community should be keeping a close eye on the Fibro community which is suffering from severe psychological illness — among those who are funded by the NIH to research the causes of Fibro. I call it “Pompous Ass Disease” (PAD). Here’s a video of an NIH PAD sufferer describing his impact on the Fibro/ME/CFS population.
http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/
Great questions, Jennie – and thanks for the update.
It IS a sick joke – a Catch-22.
Meanwhile there are certain people calling for advocates to be patient, polite, and quiet. Apparently we are supposed to suffer quietly until dead or noisily fight to the finish. I choose the latter, thank you very much.
And I thank Jennie for keeping the research funding issue front and center, since everything else is just distraction.
I think it’s possible to be both polite and outspoken. In my opinion and experience from other advocacy areas, it’s the best way forward.