The NIH director on why Americans aren't getting healthier, despite medical advances

It's Dr. Francis Collins' last few weeks as director of the National Institutes of Health after 12 years, serving under three presidents.

Collins made his name doing the kind of biomedical research NIH is famous for, especially running The Human Genome Project, which fully sequenced the human genetic code. The focus on biomedicine and cures has helped him grow the agency's budget to over $40 billion a year and win allies in both political parties.

Still, in a broad sense, Americans' health hasn't improved much in those 12 years, especially compared with people in peer countries, and some have argued the agency hasn't done enough to try to turn these trends around. One recently retired NIH division director has quipped that one way to increase funding for this line of research would be if "out of every $100, $1 would be put into the 'Hey, how come nobody's healthy?' fund."

In a wide-ranging conversation, Collins answers NPR's questions as to why — for all the taxpayer dollars going to NIH research — there haven't been more gains when it comes to Americans' overall health. He also talks about how tribalism in American culture has fueled vaccine hesitancy, and he advises his successor on how to persevere on research of politically charged topics — like guns and obesity and maternal health — even if powerful lobbies might want that research not to get done.

This interview has been edited for length and clarity.

Selena Simmons-Duffin: After you announced you'd be stepping down from the director role, you told The New York Times that one of your "chief regrets" was the persistence of vaccine hesitancy during the pandemic. How are you thinking about the role NIH could play in understanding this problem?

Francis Collins: I do think we need to understand better how — in the current climate — people make decisions. I don't think I anticipated the degree to which the tribalism of our current society would actually interfere with abilities to size up medical information and make the kinds of decisions that were going to help people.

To have now 60 million people still holding off of taking advantage of lifesaving vaccines is pretty unexpected. It does make me, at least, realize, "Boy, there are things about human behavior that I don't think we had invested enough into understanding." We basically have seen the accurate medical information overtaken, all too often, by the inaccurate conspiracies and false information on social media. It's a whole other world out there. We used to think that if knowledge was made available from credible sources, it would win the day. That's not happening now.

So you mentioned the idea of investing more in the behavioral research side of things. Do you think that should happen?

We're having serious conversations right now about whether this ought to be a special initiative at NIH to put more research into health communications and how best to frame those [messages] so that they reach people who may otherwise be influenced by information that's simply not based on evidence. Because I don't think you could look at the current circumstance now and say it's gone very well.

Looking at how America has fared in the pandemic more broadly, it really is astoundingly bad. The cases and deaths are just so high. CDC Director Robert Redfield, when he was leaving, told NPR he thought the baseline poor health of Americans had something to do with how powerfully the pandemic has hit America. What do you think about the toll of the pandemic, even as it's clearly not over?

It's a terrible toll. We've lost almost 800,000 lives. In 2020, before we had vaccines, there was not a really good strategy to protect people other than social distancing and mask-wearing, which were important, but certainly not guarantees of safety. And yes, it is the case that the people who got hit hardest, oftentimes, were people with underlying medical conditions.

But in 2021, we should have been better off. We had vaccines that were safe, that were available for free to all Americans. The ability to get immunized really went up very steeply in March and April, and yet it all kind of petered out by about May or June. The [vaccine] resistant group of 60 million people remains, for the most part, still resistant. Unfortunately, now, with delta having come along as a very contagious variant and with omicron now appearing, which may also be a real threat, we have missed the chance to put ourselves in a much better place.

Let's step back from the pandemic. In your 12 years as director, the NIH has worked on developing cures and getting them from the lab to patients faster, and the agency's budget has grown.

But, in that time, Americans haven't, on a broader scale, gotten healthier. They're sicker than people in other countries across the board, all races and incomes. When you were sworn in in 2009, life expectancy was 78.4 years, and it's been essentially stuck there.

Does it bother you that there haven't been more gains? And what role should NIH play in understanding these trends and trying to turn them around?

Well, sure, it does bother me. In many ways, the 28 years I have been at NIH have just been an amazing ride of discoveries upon discoveries. But you're right, we haven't seen that translate necessarily into advances.

Let's be clear, there are some things that have happened that are pretty exciting. Cancer deaths are dropping every year by 1 or 2%. When you add that up over 20 years, cancer deaths are down by almost 25% from where they were at the turn of the century. And that's a consequence of all the hard work that's gone into developing therapeutics based on genomics, as well as immunotherapy that's made a big dent in an otherwise terrible disease.

But we've lost ground in other areas, and a lot of them are a function of the fact that we don't have a very healthy lifestyle in our nation. Particularly with obesity and diabetes, those risk factors have been getting worse instead of better. We haven't, apparently, come up with strategies to turn that around.

On top of that, the other main reason for seeing a drop in life expectancy — other than obesity and COVID — is the opioid crisis. We at NIH are working as fast and as hard as we can to address that by trying to both identify better ways to prevent and treat drug addiction, but also to come up with treatments for chronic pain that are not addictive, because those 25 million people who suffer from chronic pain every day deserve something better than a drug that is going to be harmful.

In all of these instances, as a research enterprise — because that's our mandate — it feels like we're making great progress. But the implementation of those findings runs up against a whole lot of obstacles, in terms of the way in which our society operates, in terms of the fact that our health care system is clearly full of disparities, full of racial inequities. We're not — at NIH — able to reach out and fix that, but we can sure shine a bright light on it and we can try to come up with pilot interventions to see what would help.

A 300-page report called Shorter Lives, Poorer Health came out in 2013 — it was requested and financed by NIH and conducted by a National Academies of Science, Engineering and Medicine panel. It documented some of the things you just talked about, in terms of how Americans' health falls short compared with people in other countries. And it is filled with recommendations for further research, many specifically for NIH, including looking to how other countries are achieving better health outcomes than the U.S.

I'm curious, since this report came out when you were director, if it made an impact at the agency and whether there's been any progress on those recommendations or was there a decision not to pursue those ideas?

I do remember that report and there have been a lot of other reports along the lines since then that have tried to point to things that other countries may be doing better than we are. One of the things I've tried to do is to provide additional strength and resources to our Office of Disease Prevention, because that's a lot of what we're talking about here. One of the knocks against the National Institutes of Health is that we often seem to be the National Institutes of Disease — that a lot of the focus has been on people who are already diagnosed with some kind of health condition. And yet what we really want to do is to extend health span, not just life span, and that means really putting more research efforts into prevention.

One of the things that I'm excited about in that regard is the All of Us study, which is in the process of enrolling a million Americans, following them prospectively, many of them currently healthy. They share their electronic health records, they have blood samples taken that measure all kinds of things, including their complete genome sequences; they answer all kinds of questionnaires, they walk around with various kinds of wearable sensors. That's going to be a database that gives us information about exactly what's happened to the health of our nation and what could we do about it.

You've served under both Democratic and Republican administrations. One thing you've talked about in interviews is the culture wars. What role do you think NIH has to play in terms of developing trust and trying to get past some of that tribalism that you talked about before?

I think medical research should never be partisan. It should never get caught up in culture wars or tribal disagreements. But in our current society, it's hard to think of anything that hasn't at least been touched by those attitudes.

My goal as NIH director over these 12 years, serving three presidents, was to always try to keep medical research in a place that everybody could look at objectively and not consider it to be tainted in some way by political spin. I've made friends in Congress in both parties and both houses, in a way that I think has really helped the view of medical research to remain above the fray. And many of the strongest supporters for medical research over these 12 years have been in the Republican Party.

This is not something that people can really disagree about. You want to find answers to medical problems that are threatening yourself or your family or your community or your constituents. So I don't have a hard job in terms of explaining the mission or why we work so hard at what we do.

But I do have to sometimes worry that for whatever reason, politics will creep into this. And certainly with COVID, politics has crept into the space of misinformation in a fashion that has not helped with vaccine hesitancy. Frankly, I think it's pretty shameful if political figures trying to score points or draw attention to themselves put forward information about COVID that's demonstrably false.

Some of the reasons why Americans tend to be less healthy than people in other countries can get political pretty quickly — like healthy environments and gun injuries and drug overdoses and maternal health. But the research is important.

Do you have any guidance or thoughts for your successor on how to support the kind of research that's not as universally embraced on both sides of the aisle?

I think the guidance is — you have to look at all the reasons why people are not having a full life experience of health and figure out what we, as the largest supporter of medical research in the world, should be doing to try to understand and change those circumstances. A lot of this falls into the category of health disparities. It is shameful that your likelihood of having a certain life span depends heavily on the ZIP code where you were born, and that is a reflection of all of the inequities that exist in our society in terms of environmental exposures, socioeconomics, social determinants of health, et cetera.

We are ramping up that effort right now, especially not just to observe the situation or, as some cynics have said, admire the situation. We actually want to try pilot interventions to see if some of those things can be changed. But that's about as far as we can go. Again, if there's a major societal illness right now of tribalism and overpolarization and hyperpartisanship about every issue, probably the NIH is not well-positioned all by ourselves to fix that. We have an urgent need, I think, across society, to recognize that we may have lost something here — our anchor to a shared sense of vision and a shared sense of agreement about what is truth.

You are leaving this post. Where do you imagine the agency might go next? I know you're still going to be doing your work on Type 2 diabetes — you'll still be a part of it. So what do you see in NIH's future?

I think it is in a remarkably positive place right now as far as what we are called to do, which is to make discoveries, to learn about how life works and then apply that in a way that will lead to answers for diseases that currently don't have them. I think of NIH as not just the National Institutes of Health, but the National Institutes of Hope, and we are able now to provide hope for lots of situations that previously couldn't have really been confident in that. Look what's happened in terms of gene therapies — we're curing sickle cell disease now, something I thought would never happen in my lifetime, with gene therapies. Look at what we're able to do with cancer immunotherapy, saving people who have stage IV disease, in certain circumstances, by activating the immune system. And of course, in infectious diseases — not only have we now got mRNA vaccines for the terrible COVID-19 situation, we can apply those to lots of other infections as well.

So, anybody listening to this who's thinking maybe of moving into a career in biomedical research, this is the golden era and we need all the talent and the vision that we can possibly recruit into our midst because it's going to be a grand adventure in the coming decades.

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