The news in the past week was more about NIH generally, rather than ME specifically. President-elect Trump has nominated Representative Tom Price to be Secretary of HHS. This has touched off a war of words within the medical community, as doctors and medical students protest the American Medical Association’s endorsement of Price despite his opposition to the Affordable Care Act, Medicare, Medicaid, and the Children’s Health Insurance Program.
The 21st Century Cures Act passed the House, and is expected to pass the Senate. The bill includes an additional $4.8 billion to NIH over 10 years, half what an earlier version of the bill included. The money is intended for the cancer moonshot, Precision Medicine Initiative, and the BRAIN Initiative, although the money is not guaranteed (a point blasted by Senator Elizabeth Warren).
A source commented to me that NIH staff are scrambling to get new projects off the ground before money runs out. However, as I noted previously, no new projects can actually be funded under the continuing budget resolution unless the project was funded in FY2016.
Where all of this leaves us is beyond my guessing powers. Given President-elect Trump’s stated intention to cut taxes, it seems safe to say that money will be hard to come by around Washington in the next few years.
Here are the current cumulative numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 73 | 352 |
| Dollars Committed | $386,957,563 | $2,840,680,617 |
| RFAs for ME/CFS | ZERO | ZERO |
And here is the table for FY 2017 alone.
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 11/28/16 | 10 | $47,660,000 | Zero |
| 11/21/16 | 6 | $42,780,000 | Zero |
| 11/14/16 | 6 | $44,350,000 | Zero |
| 11/7/16 | 10 | $25,490,563 | Zero |
| 10/31/16 | 4 | $26,550,000 | Zero |
| 10/24/16 | 10 | $53,400,000 | Zero |
| 10/17/16 | 17 | $94,890,000 | Zero |
| 10/10/16 | 1 | $28,750,00 | Zero |
| 10/3/16 | 9 | $23,087,00 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
Oops, sorry, what we promised you we shouldn’t have promised you, and there won’t be money unless we already gave you some.
I hope the piddling amounts they’ve given us count for something, but I suspect not.
I hope those who voted for the new administration are satisfied at their disaster. They may be disenchanted when they realize how badly it will affect THEM, but it is too late.
Because, of course, they never get ill.
If we don’t get large RFAs for CFS/ME all we will be left with is the NIH intramural study which is under the influence of the psychobabbler wing of the research community. That is an outcome that might be worse than if the NIH would have continued to ignore us. I’d urge folks to contribute to privately funded research efforts (like Ron Davis’s) if they are able to – waiting for the government to get it’s act together might be a very long wait indeed.
So true, Marc – and even if someone can’t afford to donate, consider choosing the Open Medicine Foundation as your charity beneficiary on Amazon Smile (every time you shop on Smile.Amazon.com a percentage of your purchase goes to your chosen charity).
I’m sure many others like me who can no longer leave the house very often due to this disease use Amazon frequently for shopping, and this is a free way that we can help Ron Davis’s work!
Hi again Jennie,
Thank you very much once again for your work at informing us.
I agree wholeheartedly with Marc. We can’t wait for government. If we can see our way to donating to biomedical ME research, we can move the process along. It seems we need a more cohesive fund-raising campaign. With the estimated numbers affected, even small donations once/year from many would make a difference.
I also think that we should do everything possible to raise funds for our researchers like Davis, Lipkin, …. Our community should be able to fund fully at least some of them, We see that NIH and other authorities dont act. It´s our future and the only way is research. So if you are able donate to our researchrs and ask your friends and family to do it.
Thanks, Jennie, for finding and including the link, a war of words within the medical community. This is something that is totally under the radar; I have seen it nowhere else. I urge everyone to send it to anyone who would be outraged at the position of the AMA.