Fiscal year 2018 is over, so now we can answer the question of whether ME research funding at NIH would go up or down. As I predicted back in July, the answer is down.
Here’s the TL;DR version:
- NIH funding for ME research decreased 17% in 2018.
- Funding for non-Center grants will decrease an additional 30% in 2019 unless NIH funds enough new grants to replace the expired ones.
- NIH’s funding is now heavily concentrated at a small number of institutions.
- NIH’s ancillary activities are not sufficient to overcome the funding problem.
- Some of the most important contributors are missing in action.
- NIH must stop blaming people with ME for the low number of research applications.
- Given that NIH funding has decreased, how should we respond?
2018 Actual Numbers
Based on currently available numbers, NIH spent 17% less on ME research in 2018 compared to 2017. How is this possible?
The biggest decrease came in investigator-initiated grants, as I had warned back in October 2017. The ten grants totaled almost $4.7 million. The Collaborative Research Centers and the Data Management Center received just under $7 million combined.**
NIH is currently not providing any numbers for its intramural research, including Dr. Nath’s Clinical Care Center study. I asked when those numbers would be available, and was told it would be several months. Therefore, I expect the final number for 2018 will end up a bit higher, but I won’t speculate as to how much it will change.
So as of today, here are the numbers for 2018 compared to 2017 (You can read the details of 2017 here).
|FY 2017||FY 2018||% Change|
Pay attention to that last line. In Fiscal Year 2018, NIH spent $2.3 million LESS than in 2017. This is terrible news. In fact, it’s akin to sliding down a ramp with grease on the skids.
More than 75% of ME research funding came from just two Institutes: Neurological Diseases and Stroke (NINDS) and Allergy and Infectious Diseases (NIAID). That’s not surprising in itself, but the breakdown between those two Institutes is striking.
NIAID’s investment was 2.5 times more than NINDS, and accounted for almost 55% of the total spending on ME. NINDS put the bulk of its investment into the research centers, while NIAID’s investment provided almost 85% of the total spending on investigator-initiated grants.
This is important. NIAID’s contributions are so large that ME research funding would be significantly jeopardized (or enhanced) by a change in that Institute’s funding priorities and decisions. The risk is largest for the investigator-initiated portfolio, as it is funded almost entirely by NIAID.
One more data point to keep in mind: three investigator-initiated grants ended in FY 2018 (Younger, Katz, and Schutzer). This means that grant funding in 2019 will be almost 30% lower, unless NIH funds new grants to replace the expired ones.
What Conclusions Can We Draw?
The funding picture for 2018 leads me to four main conclusions and a strategic question.
The most obvious conclusion is that NIH’s funding is now heavily concentrated at a small number of institutions. The four research centers got more than 65% of the overall funding. Jackson Labs was the huge winner here, receiving $2.7 million combined for its research center and Dr. Unutmaz’s individual grant. That’s almost 24% of the total funding in 2018 going to just one institution.
The concentration of funding at the four Centers is problematic for several reasons. It limits the diversity of ideas and approaches to a small pool of scientists. A change at one of these institutions (such as an investigator moving to a different place) would have a disproportionate effect on the combined portfolio. And if NIH should again lose enthusiasm for the Center model, the field would take a huge monetary loss that could take years to recover from. This is precisely what happened when NIH closed the last group of research centers in 2003.
Remember, NIH has stated multiple times that its strategy is to fund the Centers and wait for that to lead to an increase in investigator-initiated grant applications. In June 2017, Dr. Koroshetz said the Centers would “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”. And in its FY2019 Budget Significant Items, NIH said, “NIH also expects that the CRCs will provide the necessary leadership to attract an increasing number of researchers to this field.”
By concentrating resources at the three CRCs, and assuming that the Centers will do the work of attracting new researchers and spinning off individual grants, NIH is not just taking a slow and conservative approach to growing the field. This approach also limits the directions the field will grow. The ideas and collaborators are limited to what Cornell, Columbia, and Jackson Labs are interested in. That’s fine, if those ideas turn out to be correct. It’s not good if the best answers are outside this circle. De-emphasizing investigator-initiated grants right now could potentially have a limiting effect on the field for years to come.
My second conclusion is that NIH’s ancillary activities are not sufficient to address the problems. The first activity is the NIH conference scheduled for April 3-5, 2019. At the ME/CFS Advocacy Call in July 2018, Dr. Breen of NIAID said the conference would be called “Accelerating Research on ME/CFS” and that planning was underway. Dr. Whittemore of NINDS said that the first day of the conference would be a young investigators’ workshop, modeled on the Invest in ME conference in England.
The second activity is the ME/CFS Working Group of the NINDS Council. Dr. Koroshetz announced the appointed members at the September 2018 NINDS Council meeting: Dr. Steven Roberds, Dr. Armin Alaedini, Dr. Cindy Bateman, Jen Brea (#MEAction), Dr. Dane Cook, Carol Head (SMCI), Dr. Tony Komaroff, Dr. Amrit Shahzad, and Dr. Steven Schutzer. The overall charge to the group is to “Provide scientific guidance to the NANDS Council on how best to advance research on ME/CFS at NIH.”
The third activity is establishing new international partnerships, as Dr. Whittemore described on the July 2018 call. The first is with the Canadian Institute of Health Research, and the second is ongoing discussions with the Medical Research Council in the UK and funding agencies in Australia. International collaborations, especially formalized relationships with analogous agencies, can produce better coordination and funding which then hopefully expands the field.
Despite the promise of these activities, they cannot accomplish enough to overcome the trickle down model NIH is pursuing. Dribbling in small amounts of funding to a very small number of investigators, and waiting for them to attract newcomers to the field, is a very slow and very cautious model. It will not yield results for years. We’ve had conferences and working group recommendations in the past. That has not been enough to propel this field forward at the pace we need.
My third conclusion is that some of the most important contributors are missing in action. In May 2018, Cort Johnson reported that only 12 applications were submitted to NIH between July 2017 and April 2018. I am not aware of how many applications were submitted after that but unless there was a sudden avalanche, the number of applications is too low.
There are dozens of ME researchers who have had NIH funding in the past who do not have it now. Have they been submitting applications? Have they moved on to other funding sources, or lost interest in the field? How many researchers are interested in ME, but have not submitted applications because of perceptions about the difficulty in getting funding? Is ME research still regarded as a kiss of death for a scientific career? Researchers are, understandably, reluctant to discuss this. Lily Chu tried to conduct an anonymous survey on barriers to NIH funding, but not enough researchers responded to make it worthwhile.
Don’t mistake my comments as letting NIH off the hook. The tired old refrain of “we can’t fund you if you don’t apply” is a very convenient way for NIH to pass the blame. We need aggressive, immediate, clear action from NIH at the highest level on an unprecedented scale to address the funding problems. NIH cannot just talk about how much they care, drop in a few bucks, and wait for the researchers to come calling.
Yet there is a kernel of truth to the application problem. We have to do everything we possibly can to force NIH to cough up the money. Researchers, please help us. Think how much stronger our demands would be if we could show Congress that applications have doubled/tripled/quadrupled but funding has not. The only way we can make that argument is to have the evidence, and the evidence depends on you.
When I predicted that NIH funding was going to drop 17% for 2018, I addressed the application conundrum:
We need heroic efforts on all sides. We need NIH to be invest more money, but we also need our researchers to do heavy lifting and get those grants submitted. I know first hand how time consuming writing grant applications can be, and I understand that researchers are reluctant to invest the time if they think funding is unlikely. But we are at the point where submitting more grants is critical, regardless of the predicted likelihood of success.
My fourth conclusion is that NIH must stop blaming people with ME and ME advocates for the low number of research applications and the state of the science. Just about every time NIH is confronted on its approach to ME, we hear some version of “the patients are unreasonable and mean, so no one wants to work on it.” Here are two examples:
- Dr. Avi Nath: “And we want to really try and help, but we can’t do that if the very people you want to help become antagonistic towards you.”
- Dr. Walter Koroshetz: “Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.”
I have even heard variations of this comment from a few researchers in our field. Don’t be too loud/forceful/demanding, or you’ll scare the poor scientists away.
I have written many times about this blame game, and how well it serves the NIH status quo. As long as people with ME are blamed for chasing away good scientists with mythical attacks and antagonism, then no one else is accountable. Not enough funding? Our fault. Not enough applications? Our fault.
Here’s the thing. HIV/AIDS activists are loud, forceful, and demanding. ACT UP disrupted the opening ceremonies at the 1996 International AIDS Conference. Thousands of activists occupied the campus of NIH in 1990. If you want to see the perfect call and response of “you activists are being too loud,” read the Washington Post’s 1990 editorial Harassing NIH and the responses from AIDS activists. Then ask yourself this question: is there any evidence that HIV/AIDS activism scared scientists away from HIV research?
As I said over a year ago: “People with ME are not the problem. The failure of the research and medical enterprise to take care of people with ME is the problem.” Anyone who repeats the pathetic stereotype that people with ME are to blame for the lack of funding and/or interested researchers needs to sit down and be quiet. It is offensive. It is a distraction.
This leads to my strategic question: Given that NIH funding decreased by 17% in 2018, how should we respond?
Some advocates will say we should continue the thanks and positive reinforcement approach. This strategy relies on the fact that, even with the 17% decrease, $11.6 million is better than any year’s funding prior to 2017. SMCI and #MEAction have seats on the NINDS Working Group. NIH representatives have admitted in public that ME/CFS is a real disease and needs more funding. We have at least a few allies on the NIH campus. This approach says we should cooperate and be patient.
Confrontation and protest, the counter-strategy to cooperation, relies on different facts. Chief among them is the glacial pace of change. The research center money was awarded two years after Dr. Collins promised to ramp up funding. It has been three years since Dr. Collins said, “Give us a chance,” and funding has fallen 17% below the high water mark of 2017.
I know that good research takes time. No one needs to remind me of that. I was 26 when I got sick; I just turned 50. I’ve been an ME advocate for twenty of those years. I am acutely aware of the passage of time. Some things have changed. Many things have not.
I am finding patience and cooperation hard to come by these days. We are falling backwards again. At what point do we say this has gone too far? We must make constant, unbroken, and substantial progress towards effective treatments and cures. If we don’t, then everyone who currently has ME will die with it. Or of it.