NIH analyses funding vs. disease harm

[Merry]

In a Washington Post blog titled "Why the diseases that cause the most harm don't always get the most research money," Carolyn Johnson writes about the National Institutes of Health's analysis of its research funding:

http://www.washingtonpost.com/blogs...harm-dont-always-get-the-most-research-money/

The NHI analysis, published last month, is discussed in Extramurral Nexus, a publication of the NIH Office of Extramural Research:

https://nexus.od.nih.gov/all/2015/06/19/burden-of-disease-and-nih-funding-priorities/

(I guess there is no way to edit thread titles. "Analyses" should be "analyzes". )

 

[Cort]

In a Washington Post blog titled "Why the diseases that cause the most harm don't always get the most research money," Carolyn Johnson writes about the National Institutes of Health's analysis of its research funding:

http://www.washingtonpost.com/blogs...harm-dont-always-get-the-most-research-money/

The NHI analysis, published last month, is discussed in Extramurral Nexus, a publication of the NIH Office of Extramural Research:

https://nexus.od.nih.gov/all/2015/06/19/burden-of-disease-and-nih-funding-priorities/

(I guess there is no way to edit thread titles. "Analyses" should be "analyzes". )

Thanks so much Merry for posting these. This is such an important topic for us.

It might seem that research dollars should follow public health impact, with the diseases that cause the most harm attracting the most money. Overall, most diseases do follow that general pattern. But the outliers can be significant -- HIV currently gets 10 percent of the NIH budget -- and highlight just how complex and baffling this process can be, influenced by factors that range from the amount of scientific opportunity to make progress to the level of human suffering.

This has apparently come up before - and the NIH did nothing about it

In 1999, in the midst of a period of storied growth for the NIH when the budget doubled over a five-year period, the issue came up repeatedly, with the Institute of Medicine calling for NIH to do a better job evaluating the disease burden and communicating to the public how funding choices are made.

Suffering and disease burden plays little role - a third - in how the HIV doles out it's dollars

Claiborne Johnston, dean of the Dell Medical School in Austin, Tex., found in a 2011 PLoS ONE study that a third of the variation in how much money each disease area received could be explained by looking at the toll of human suffering

.

Which diseases tend to get underfunded?

“The thing I found fascinating, and this still appears to be the case, is we tend to underfund things where we blame the victim,” Johnston said.

Some changes have been made, though

A few years ago, the National Institute of Mental Health began to analyze the question. Thomas Insel, the director of the institute, said he found the analysis illuminating. It led to an increased focus on suicide and eating disorders.

"When we did it internally, it became really clear that an area that was really underfunded was suicide research," Insel said. "I just really didn’t realize that. I thought we had a lot more invested there. I should have known. I should have figured it out some other way, but it wasn’t until I saw the graph that I realize that was an area we needed to build."

Migraine is a fascinating example of a disorder that affects a lot of people, causes great distress and gets horrible funding...

"If the purpose of NIH is to relieve the burden of disease, then studies should focus on where the disease burden actually is," Young (Alliance for Headache Disorders) said in an e-mail. "There is also the issue of fairness – people who have a disease that is unpopular have just as much right to benefit from research as those with a more popular disease. "