Fiscal Year 2016 ended on Friday, September 30th. Were you holding your breath for that ME research RFA? I hope not.
NIH did not issue an RFA for ME research in FY2016. However, NIH did issue 352 RFAs in that time period, for a total of more than $2.8 BILLION. Last week alone, with the fiscal year coming to a close, NIH issued more than $60 million in RFAs.
I started this RFA Ticker with the goal of giving advocates data to help them assess if NIH was doing everything it could to promote and fund ME research. Seeing how much NIH is doing in other areas helps shine a bright light on what it is not doing in ME.
After Dr. Collins’s comments at the March 8, 2016 telebriefing, I received a suggestion that I stop the weekly Ticker because surely new funding was just around the corner. A similar suggestion was made after the concept clearance for research network funding. I’m paraphrasing here, but the general sentiment was Lighten up, NIH funding is on the way.
I said then and I say again now: show me the money. Until there is money on the table, there is no money on the table. Telebriefings and promises and status reports are just words. People with the best of intentions can talk until they are blue in the face. The metric that matters is funding. Promises don’t find cures.
And so next week, I will begin the tally for Fiscal Year 2017.
- Total RFAs Issued by NIH: 352 (Fiscal Year 2016)
- Total Dollars Committed to RFAs: $2,840,680,617 (Fiscal Year 2016)
- Total RFAs for ME/CFS: ZERO (Fiscal Year 2016)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 9/26/16 | 9 | $60,585,000 | Zero |
| 9/19/16 | 15 | $62,636,000 | Zero |
| 9/12/16 | 7 | $31,150,000 | Zero |
| 9/5/16 | 3 | $6,250,000 | Zero |
| 8/29/16 | 8 | $11,250,000 | Zero |
| 8/22/16 | 5 | $14,300,000 | Zero |
| 8/15/16 | 16 | $130,685,000 | Zero |
| 8/8/16 | 13 | $137,053,000 | Zero |
| 8/1/16 | 9 | $30,900,000 | Zero |
| 7/25/16 | 5 | $128,556,617 | Zero |
| 7/18/16 | 3 | $17,950,000 | Zero |
| 7/11/16 | 10 | $75,855,000 | Zero |
| 7/4/16 | 0 | $0 | Zero |
| 6/27/16 | 3 | $12,971,000 | Zero |
| 6/20/16 | 1 | $2,000,000 | Zero |
| 6/13/16 | 5 | $21,475,000 | Zero |
| 6/6/16 | 5 | $7,100,000 | Zero |
| 5/30/16 | 4 | $6,900,000 | Zero |
| 5/23/16 | 8 | $42,400,000 | Zero |
| 5/16/16 | 2 | $7,800,000 | Zero |
| 5/9/16 | 11 | $32,100,000 | Zero |
| 5/2/16 | 8 | $32,485,000 | Zero |
| 4/25/16 | 4 | $7,500,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/11/16 | 4 | $6,825,000 | Zero |
| 4/4/16 | 8 | $27,000,000 | Zero |
| 3/28/16 | 13 | $161,000,000 | Zero |
| 3/21/16 | 1 | $2,700,000 | Zero |
| 3/14/16 | 5 | $23,650,000 | Zero |
| 3/7/16 | 9 | $82,710,000 | Zero |
| 2/29/16 | 1 | $1,890,000 | Zero |
| 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 | 4 | $9,300,000 | 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.
Thank you for tracking this in FY 16.
” Until there is money on the table, there is no money on the table. Telebriefings and promises and status reports are just words. People with the best of intentions can talk until they are blue in the face. The metric that matters is funding. Promises don’t find cures.”
I totally agree with the above.
Here’s hoping we don’t have too long to wait in FY 17 for real funding.
Well, if nothing else, I guess we can stop wondering how serious NIH was about funding ME research in FY2016. Now we know, exactly, how serious they were.
Thank you for doing this. Please, know you’re helping, and don’t let anybody tell you to lighten up, because ME/CFS is not lightening up on us… May we and the researchers all have a better year in 2017.
Thank you Jennie for this excellent, and very practical demonstration of commitment, or lack of, on the part of the NIH. And, thank you for your determination to continue, and not “lighten up”. What do those who told you to stop say now?
The Canadian Institutes of Health Research (CIHR), the equivalent of the NIH, had said they were committed to supporting a catalyst grant for a national ME research network. The grant was to be two hundred thousand dollars for each of 3 years. Several MP’S including our Health Minister sent letters of assurance to the ME community, that outlined this funding commitment.
On August 25th, we received word that anonymous grant application reviewers selected by the CIHR, denied the only application for the funding because “there is no evidence CFS is a disease”. They also said focusing on the hunt for biomarkers is a waste of time. The application was denied because it had a biomedical focus for a biomedical disease.
The CIHR info and MP’S letters all say the CIHR liaises with the NIH, and mentions international collaboration etc. Maybe this is what they mean by international collaboration: no money for ME research.
If I was an American citizen with ME, I would be looking very closely at what just happened in Canada to the only funding available for biomedical ME research.
MillionsMissingCanada is holding a protest about the CIHR decision on Thursday, October 6 in Toronto: 12 noon to 2 pm; Health Canada Regional Office (Ontario), 180 Queen Street, West, Toronto. For more info email: millionsmissingcanada@gmail.com
Thanks very much Jennie, for keeping us up to date!
Thank you, Cindy, for the important work you are doing! — Rivka
Hi Rivka,
Thanks, but I should clarify, other advocates are holding this protest in Toronto. It’s been a lot of organizing, and I applaud them very loudly for all their dedication!
For any Canadian with any disability, the federal “Minister responsible for Persons with Disabilities has planned a series of cross-country meetings to collect information on disability issues leading to new legislation.” For those who can’t attend the meetings, email, and postal mail submissions are welcomed. The website for info is: http://www.esdc.gc.ca/en/consultations/disability/legislation/index.page
Thank you very much, Jennie for posting this!
Dr. Collins: This is reprehensible, horrific, sad, tragic! Do you not understand that people are literally dying? And that people are losing their active lives, relegated to their homes, couches and beds for years, even decades? 1-2.5 million in the US, 17-20 million people world wide.
Silence = a living death
Jennie: Again thank you for your attention to these details about the NIH RFAs. This information will be very important going forward. Its very disappointing to say the least, and I hope we can use this data to make a strong case on the Hill and within the NIH/HHS now and after the election.
Was Dr Collins referring to the 2016 or 2017 budget when he said he was serious about helping us? Also, it would be nice to get a progress report regarding the status of the upcoming NIH study.
What’s shocking to me is how many advocates jumped on this bandwagon and how many told those of us who were skeptical to basically shut up.
I think that the timer for the RFA is a great tool and important. My understanding of the split in advocacy came more singling out researchers for accepting money for travel expenses, and attempts to block P2P, OMI, or any of the recommendations that wold come out of them.
They’re just embarrassed by us continuing to be sick now that they’ve noticed we exist!
They should be!
And they have egg on their faces, all the people who promised – and have NOT delivered a thing!
Throw more eggs. Maybe you’re been TOO moderate, just writing the numbers every week – though I don’t think you could find a more powerful indictment of the difference between words and actions, i.e., money.
Shame on them.
I wish the fiction were taking off better – Pride’s Children’s secondary purpose is to soften hearts of stone.
“Give us a chance to prove we’re serious, because we are.” ~Francis Collins, October 29, 2015
Thank you a million times over for keeping the RFA Ticker going.
It makes such a simple statement, but in a few words and numbers speaks volumes about the denial and neglect around ME.
Thank you so much for keeping up the RFA Ticker every week no matter what.
You are absolutely right in doing this and no one should pressure you to “lighten up.”
We are all with you on this.
It is outrageous that the NIH hasn’t given grants for ME/CFS research despite vague promises, which are no guarantee at all — until the money is granted. I think the NIH still wants to push ME/CFS and its sufferers under the rug once again.
So, it means we have to keep the pressure on. And you have done a great job on this.
I hope to die before Dr Francis “Lucy” Collins, so I can go to Hell and prepare a nice warm reception for him…
Wonderful! So good NOT to pussyfoot and to hear it straight. Well said!
Have folks seen this article in the Huffington Post by Maureen Hanson?
http://www.huffingtonpost.com/maureen-hanson/millions-are-missing-will-the-world-finally-notice_b_12184042.html
Jennie, I’m sorry to say you were completely right about this, and my optimisim was wholly unfounded. I hope the picture will look very different next year, but so far the NIH’s response to the situation is proving wholly inadequate.
Simon, I truly wish you had been right and I had been wrong!! I agree with you that NIH’s response is wholly inadequate, and I hope that changes next year. We’ll see!
And I should add that you were not alone. Hope and optimism were the majority view after Collins’s promise. Multiple people were critical of my wait and see stance.