As it treats veterans exposed to the hazards of burn pits, the Veterans Health Administration is also trying to better understand the burn pit phenomenon. That’s where the burn pit registry comes in. It’s database with information on veterans and their burn pit-related maladies. Joining the Federal Drive with Tom Temin with more about the burn pit registry and some recent updates to it, VA’s undersecretary for health, Dr. Shereef Elnahal.

Interview transcript: 

Tom Temin
And let’s begin with the beginning. What is the burn pit registry? And tell us what it is and how it works. Let’s start there.

Shereef Elnahal
Well, I’ll start by describing the law that enabled us to do this, which is the Pact Act. The Pact Act was signed by President Biden in August of 2022, and that law allowed us to finally meet the extensive needs of veterans exposed to toxic substances like bird pits, more veterans who are exposed to Agent Orange in Vietnam and other toxic substances. And since that law was passed, we’ve enrolled more than 740,000 new veterans into the system, which is a 34% increase over the two-year period before the Pact Act was signed.

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Tom Temin
And you bring a good point up too, and that is, I think people think of burn pits as something recent. But you mentioned they go back to Vietnam. This was a military response to getting rid of stuff.

Shereef Elnahal
Yeah, burn pits, unfortunately, if you see pictures of them, large clouds of black smoke, because all of the waste and refuse in some of these stationed areas in Central Command were dumped into these large pits and then burned. So it’s not hard to imagine that people would have significant issues, especially respiratory problems, problems breathing and all the sort of lung issues that come with it because of that exposure. But we now have more than 300 categories of conditions that we associate with burn pit exposure that can allow veterans to get benefits that are considered to be disabilities from their service in Central Command.

Tom Temin
One question about that. You say 300 possible conditions. How do you, just from a medical standpoint, a scientific standpoint, assure yourself that these 300 weren’t conjured up because people come in with different maladies, and they were also burn pit, and so therefore it gets associated with burn pit. How do you make sure you’re really not confusing cause and effect across 300 possible situations?

Shereef Elnahal
It’s a good question. We are benefiting from the authority right in the law to be able to just give veterans the benefit of the doubt when they file a claim, and assume that those conditions are associated with their exposure. And so we have the mindset in the Biden-Harris administration that we want to give the veteran the benefit of the doubt as much as possible, and confer maximum benefits and healthcare access. We do, however, need to continue studying other conditions that might be associated with burn pits, and that’s exactly what this new burn pit registry is about. Previously we had this registry, and it required a very long questionnaire, required veterans to wait, sometimes weeks, even months, to get an exam, and has been ultimately assessed to be not useful for high quality research. This new registry changes that.

Tom Temin
All right. What about it is different than simply people signing up and saying, What’s the matter with them?

Shereef Elnahal
Well the first and most important thing is that we now automatically include about 4.7 million veterans whose deployment data out of the Department of Defense shows that they were likely exposed to burn pits. Before we required veterans to contact us, now we automatically include their information in this database. So it’s much more comprehensive, it’s much more amenable to research that we can use to discover new conditions associated with burn pits. But if veterans don’t want to have their information in this registry, they can opt out. There’s a specific website where they fill out their information, and within minutes, they can tell us that they don’t want to be in this database and opt out. Now, our experience with things like the Million Veterans Program, which veterans, more than a million veterans, voluntarily decided to give their DNA into a database for research, shows that veterans overwhelmingly want their information to help discover new therapies and new insights to help other veterans. There isn’t a single group who wants to benefit veterans more than veterans themselves, and so we encourage veterans to keep their data in, but it’s ultimately their choice if they want to opt out.

Tom Temin
We are speaking with Dr. Shareef Elnahal. He is the Veterans Affairs department’s undersecretary for health. Well, tell us what data specifically in there, and you’ve added some new sets of data in this update to the registry for research purposes.

Shereef Elnahal
It is deployment data, so where people were stationed and for how long, and it’s also demographic information, so basic information like age, race, ethnicity and some other bits of data that are important for discovering insights, and especially new conditions that might be associated with burn pits. We can also associate more clinical information and add data to that registry for research. But if we were to add data, we would have to get the consent of veterans, and so we have a process for that where, if you’re a part of a cohort, that we want to do much more in depth research on, you would be contacted to get your consent as a veteran before that. But this is the most basic complete information set for us to be able to do really high quality research. I do want to mention, though, Tom that ultimately, the way that you actually get benefits in healthcare is a separate process. If a veteran thinks they’ve been exposed to burn pits and have a condition associated with it, the registry doesn’t have anything to do with that, you can just go to va.gov/pact and apply for benefits and healthcare.

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Tom Temin
But from a research standpoint, what type of research can you do? Because simply having demographics, and the fact that they might have been in the presence of a burn pit doesn’t tell you whether they were a yard away from it, shoveling in it with a rake, a mile away from it, or what was being burned, the fuel being used to burn it. I would think all those variables you need to have to understand deeply, the phenomenon of burn pits.

Shereef Elnahal
We have ways to easily tie clinical information to information in the registry, and so if we want to investigate a specific question, like we’re doing right now with leukemia and multiple myeloma. We can take the data from up to 9 million enrolled veterans and associated but we will not do that unless we get the specific consent of individual veterans. So what this is, is really a platform for more specific research that we can do to tie conditions with burn pit exposure. So it’s the basic foundation for us to be able to do that research.

Tom Temin
And what is it you’re trying to find out? What would VA like to know from a clinical standpoint, from a treatment standpoint, to help these people.

Shereef Elnahal
We need to do research constantly to understand what conditions and what manifestations clinically happen after a veteran is exposed to burn pits. Specific deployment locations may have other toxic exposures associated with it. So if we want to use the data set to say burn pits, plus depleted uranium, or any of the other types of exposures, we can also do that. And the idea is we can discover that, hey, looks like there’s a pattern or correlation with the development of any type of condition. Let’s say hypertension, let’s say certain types of cancers might be associated with burn pits. Now, the Pact Act gives us a great starting point, because it already, under the law, authorizes us to confer benefits for over 300 categories of conditions, but it’s not every condition, and so we still need to do this important research.

Tom Temin
Is it important to know what was burning, and how it was being burned, and is that data available going back many years?

Shereef Elnahal
It might be available. And if we want to ask those specific questions, we would have to query the Department of Defense. I do want to mention that Assistant Secretary Martinez Lopez, who the Assistant Secretary of Defense for Health Affairs has been a really important collaborator, and so we’ve been exchanging data to be able to make this new registry happen. And we can always ask DoD as part of the interagency process for the information that we need.

Tom Temin
By the way, do you know whether they’re still using burn pits anywhere? Not to my knowledge.

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Shereef Elnahal
And of course, part of the work that we do across the interagency is to inform the Department of Defense when we think practices that have happened historically aren’t the best for service members’ health, and that’s of course, the Assistant Secretary’s role is to make sure that readiness is maximized, but also the health of our women and men in service.

Tom Temin
And with those 700,000 plus that have enrolled under the pact Act are getting VA care. What have VA learned at this point that it may not have known about burn pit and its associated illnesses with the at least couple of years of experience you have now?

Shereef Elnahal
We’ve learned that the most important thing is to just get veterans access to VA healthcare. We release, as just one example, an annual suicide report for veterans. The last report covered the year 2021, and it showed over 6,000 veterans who died by suicide. Every single one of those veterans was failed by this country. Every single one of those veterans experienced a tragedy. And if we’re not learning from that, we’re making a giant mistake. So one of the insights is that when a veteran is tied to VA health care, and especially when a veteran is getting VA benefits, they are at lower risk for suicide. So what the Pact Act has done is it’s opened more doors than ever before to get veterans connected to VA, and we know that when it comes to veteran suicide, that lowers their risk on top of any of the other health risks that they may have.

Tom Temin
Have you learned anything with respect to the specific 300 conditions and any clinical learnings to improve care for whatever it is that you can get as a result of having been exposed to burn pits?

Shereef Elnahal
So even before the Pact Act was passed, there was a new process that the Secretary started that allowed us to expand the data sets that we were using to understand what toxic exposures might lead to clinically. And there were three new conditions right before the Pact Act was passed, they were able to put into regulation to say, we will offer service connected benefits, asthma, rhinitis and sinusitis, and that came from the data in our health records, but also claims data, data from the Department of Defense. That’s exactly what this burn pit registry will help us do even faster and better.

Tom Temin
And do you envision it may be spilling over into general medicine, so that people can understand the general medical population and the general population can understand better what exposures to different fumes, let’s say just for shorthand, and possible illnesses that result?

Shereef Elnahal
Absolutely. We’ve screened more than 5.2 million veterans for toxic exposures across our system. These are veterans who are already getting care with VA, and so every one of those veterans now has a permanent marker in their health record that they were exposed to a toxin. So we call this toxic exposure informed care, where any clinician who’s treating that veteran will understand that veteran is exposed to burn pits or Agent Orange or contaminated water at Camp Lejeune, whatever it might be. And that will obviously be important information to understand what diagnoses that veteran might have, and what the appropriate treatment should be.

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