Q&A: NIH Director Collins, Sen. Durbin on securing medical research funding in an election year

Getting Congress to agree on increased funding for any federal agency can be difficult—especially in the middle of a presidential election.

National Institutes of Health (NIH) Director Francis Collins, MD, PhD, however, sounded optimistic about his agency getting another multi-billion dollar funding boost this year in a forum at Northwestern University’s Feinberg School of Medicine on Aug. 30.

U.S. Sen. Dick Durbin, D-Illinois, said members of both parties want to continue to increase NIH funding annually, saying Sen. Roy Blunt, R-Missouri, told him “we can’t be one-hit wonders.”

Both Durbin and Collins spoke to HealthExec after the forum about how the funding boost can continue and what sort of research could receive grants thanks to this extra money.

HealthExec: Dr. Collins, you say you’re feeling optimistic. For researchers and physicians who aren’t talking directly to politicians, how are they feeling about the chances of federal investment in medical research continuing to increase?

Collins: I will tell you a couple of years ago in a session (with postdoctoral fellows), I would hear a lot of very serious concerns about whether career paths are possible given the loss in resources—more than 20 percent of NIH’s ability to support research eroded since 2003. But now that we have seen that turning of the corner, I expect I will hear some more optimism.

We still have a ways to go. Let’s be clear about this: We have not solved what is a very long slide with one good year. We need to see that sustained, and then I think I can give those folks an even greater sense of confidence that the future is theirs.

What I do know, I will hear how excited they are about the science they’re doing, because there’s never been a more promising time, right now, to be able to make a difference, to be able to make breakthroughs, to change the whole landscape about how life works and how disease occurs.

HealthExec: Sen. Durbin, what are the chances the full Congress will approve another $2 billion increase in funding?

Durbin: Well, we have high hopes based on what we achieved in this year’s budget where we had bipartisan, bicameral agreement for 5 percent real growth. In the Senate, hats off to the Republican leaders, in this case, Sen. Blunt of Missouri, as well as others, who championed it for this fiscal year. The House did not reach the same number, but we have good friends who will be at the table, including Congressman Tom Cole of Oklahoma, who has an extraordinary commitment to medical research at NIH as well as CDC. He believes, as I do too, that this is an important agency as well.

So I’m optimistic. We’ve got to avoid continuing resolutions. This is Washington talk which means we’re going to repeat what we did last year. No, we want to go beyond last year and improve on what we funded, and that’s why I think we have a good chance to do it.

HealthExec: Can you get that increase in funding without taking money away from other health agencies and programs?

Durbin: That’s the tough part, because it’s a zero-sum game. There is an amount of money that’s given. We have to find ways to fund it. There are many of us who would like to deal with revenue, but I know in this political environment, it’s not going to happen, so it will have to come from within resources currently available and we’ve been able to find them. That’s the good news, and I hope we will continue to.

What I like about this is momentum. I don’t know if a second year is enough to call it momentum, but there’s a feeling that we’re not going to let this happen one year and then forget about it. If we create the momentum into a standard, it’s going to be more difficult in future Congresses for members to step up and say, ‘Well, we just won’t do 5 percent this year.’

They’ll be a lot of voices, not just in Congress, but around the country, saying ‘You have to do it.’ We have to keep our commitment to make this 5 percent real growth.

HealthExec: Dr. Collins, does the increased funding come with an increased focus on rare diseases?

Collins: Rare diseases are, in fact, a critically important of what NIH invests in. There are about 7,000 rare diseases. We now know the cause of about 5,500 of those. Many of them are rare genetic diseases where we just discovered the cause recently, but we only have treatments that are documented to be successful in about 500.

So we have this huge gap between what we know and what we can actually do clinically. NIH feels a great responsibility to try to fill that. That’s one of the reasons that, with the help from the Congress, we started this new National Center for Advancing Translational Sciences, which focuses very heavily on rare diseases.

I wish we had the resources—again, the resources will keep coming up here—to be able to pursue all of those as vigorously as we would like, but it is a critical part of our portfolio, especially because we know for really rare diseases, the private sector is not going to see much in the way of a market incentive to work there, so that means it’s really up to us.