On the Clock Pt II: The Winners and Losers in the NIH Money Game

Posted by Cort Johnson

Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year with some diseases winning big and some losing big; a tight budget does not mean that a disease is doomed to a stagnant budget.

THE BIG LOSERS: Each of these diseases or conditions has taken huge hits in funding over the past five years.

DiseaseFunding Decline (millions)Percent Decline
Acute respiratory distress syndrome-2433.00%
Cerebral Palsy-627.00%
Chronic Fatigue Syndrome-120.00%
Cystic Fibrosis-4737.00%
Parkinson’s Disease-4821.00%
Vaccine Related-27917.00%


DiseaseFunding Increase (millions)Percent Decline
Fetal Alcohol Syndrome+936.00%
Hepatitis B+1011.00%
Fragile X+735.00%
Inflammatory Bowel Disease+1625.00%

What Does This All Mean?

Politics and the Media can play a huge role in how a disease is funded. Yes it’s true; our highly objective medical research world is to some degree a pawn of the media. And why not? Politicians are beholden to the media and they control the NIH’s purse strings. If a disease’s constituents really demand funding they will get funding. AIDS advocates have been so effective at getting that disease funding that the NIAID  is often referred to as the National Institute of AIDS.  AID’s research currently gets 3 ½ billion dollar a year in funding from the NIH.

The really major fluctuations have occurred in diseases on the upswing in the media and once-hot button diseases that are on the downswing. They include huge declines in spending for anthrax (-$145 million), smallpox (-$201 million) and vaccine related issues (-$279 million). Spending on obesity on the other hand, a very hot topic right now, increased by a whopping $238 million, a 56% increase in just five years. Even if its budget is declining if the NIH wants to spend money on a disease they can find a way.

Size doesn’t matter. One might expect that less well-known or important diseases would get elbowed out by the big disease lobbies during tough times – but that’s not true at all; psoriasis, Fragile X syndrome, aphasia and fetal alcohol syndrome are all diseases with small budgets that received ample funding increases (>35%) all the while the Dr. Hanna was reporting that budgets were too tight for ME/CFS funding to increase. Take away point: again – if the NIH really wants to spend money on a disease they will find a way.

Dead Wrong – Dr. Hanna is dead wrong when she states that tight budgetary times have doomed ME/CFS to its present level of mediocre funding, etc. Many diseases, even small diseases, have received significant increases in funding over the past five years. If the NIH desired to increase funding for ME/CFS they could have easily done so without impacting other programs. What’s missing at the NIH with regard to ME/CFS is not money but desire.

What’s also missing is the political will from the ME/CFS community to force the NIH to fund this disease at the level it deserves. Absent that, every indication is that the federal government will continue on at its petty pace – and the enormous suffering in the ME/CFS community will continue.

Check out What You Can Do – for some things you can do to help impact federal spending on this disease.

Next up –  On the Clock at the NIH: Part III – It’s Raining Money

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