Stephanie Grace: Funding for disease research in decline

The ice bucket challenge to raise money for and awareness of ALS has been a thing to behold. Countless people around the country have opened their hearts, minds and wallets to combat the devastating, and at this point incurable, neurological disease. After watching Saints star Steve Gleason wage his own battle in public, Louisianans were particularly primed to jump in.

Now that the ice is starting to melt and all those videos are dropping down everyone’s Facebook feeds, it’s a good time to ask: When the challenge runs its course, will we be able to say we’ve done all we can?

As long as we’re talking about raising awareness, now would be a good time to talk about sustaining support for efforts to battle ALS and all sorts of other diseases. And that means talking about federal funding for medical research. It’s not as tangible. It doesn’t lend itself to entertaining viral videos. But it’s vitally important, and in this era of austerity, it’s by no means a given.

Consider some numbers:

As of Friday, contributions to the ALS Association from the viral challenge were approaching $100 million, an astronomical figure by philanthropic standards and one that will be incredibly difficult to match at another time or for another cause.

That’s more than double what the National Institutes of Health have been spending annually on ALS research in recent years. But it’s also less than the $133 million the NIH sent Louisiana’s way in fiscal 2013, when awards totaled more than $22 billion.

Overall funding was strong during the Clinton years and dropped around the middle of the last decade when the financial crisis hit. It rose again, thanks in part to a one-time infusion from the federal stimulus. But the budget showdowns over the past couple of years have sent the total back down.

“The ice bucket challenge is meaningful and valuable because it brings attention to the need for research dollars,” said Laura S. Levy, professor of microbiology and immunology and vice president for research at Tulane University. Still, she said, “most of the support comes from the NIH, and it’s been declining for the last several years.”

As a result, she said, researchers have had a tougher time landing grants to embark on promising research because the competition is so intense. In the past, she said, as many as 30 percent of applications got funding. Today, some of the NIH’s institutes fund fewer than 10 percent of proposals.

“That’s stunning,” Levy said, “because we know many more than that have merit.”

In an interview with USA Today last spring, NIH Director Dr. Francis Collins said the implications are alarming.

“While the scientific opportunities have never been more exciting than right now, the stress on the biomedical community in the United States has never been more severe,” Collins told the paper’s editorial board. “Many young investigators are on the brink of giving up because of the difficulty of getting support. ...

“We are throwing away probably half of the innovative, talented research proposals that the nation’s finest biomedical community has produced.”

Factoring in inflation, Collins said, the NIH has lost 25 percent of its purchasing power over the last decade.

This isn’t just a good time to focus on the issue because of the ice bucket challenge. It’s also election season for every member of Congress and a third of the all senators, including Mary Landrieu. Louisiana has two highly competitive congressional contests. It also happens to have three physicians in the delegation — Charles Boustany and John Fleming, who are up for re-election, and Bill Cassidy, who’s giving up his seat to challenge Landrieu — so they should know something about the topic.

No question, it’s more popular these days to talk about all the things the federal government should not be funding. But in addition to being a wildly successful fundraising campaign, maybe the ice bucket challenge can serve as a reminder that it’s just as important to talk about what the government should be funding.

Stephanie Grace can be contacted at sgrace@theadvocate.com. Read her blog at blogs.theadvocate.com/gracenotes. Follow her on Twitter, @stephgracenola.