The VA has vowed to fix how veterans receive disability benefits for this burn pit injury. Critics say it’s taking too long

For years, veterans who live with a debilitating lung ailment after being exposed to toxic air and burning trash during their service have reported they’ve struggled to get disability benefits through the Department of Veterans Affairs.

The VA’s system for awarding these benefits does not have a diagnostic code for constrictive bronchiolitis, or CB, which has been linked to post-9/11 military installations in Southwest Asia, Afghanistan and Djibouti.

For nearly all medical conditions a veteran may have, the VA’s Schedule for Rating Disabilities assigns a four-digit code, along with a percentage rating that attempts to reflect the degree of a veteran’s disability. The ratings help determine the monthly payment a veteran will receive for their service-related injuries and diseases to make up for the “loss of working time from exacerbations or illnesses proportionate to the severity” of their condition.

Because the VA does not have a specific diagnostic code and corollary rating schedule for this condition, the majority of veterans with constrictive bronchiolitis receive a zero disability rating, and are not awarded disability compensation. But a new revision to the system could create such a code, making it easier for veterans to receive payments.

In an interview with the PBS NewsHour, Under Secretary for Benefits Joshua Jacobs said the VA was “actively working to update” its Schedule for Rating Disabilities “as quickly as possible” and that it will address constrictive bronchiolitis. “It is a very high priority.”

In an email to the NewsHour, the department’s spokesman went one step further, saying the “VA is considering the addition of a diagnostic code for constrictive bronchiolitis.”

Under Secretary of Veterans Affairs for Health Dr. Shereef Elnahal shared more details about options officials were considering at a Society for Federal Health Professionals conference in February, according to two participants who say they spoke to him on the sidelines. Elnahal indicated that lawyers at the VA were trying to decide whether a newly created diagnostic code and rating schedule should be focused exclusively around constrictive bronchiolitis, or an umbrella medical term called “Deployment-Related Respiratory Disease,” which includes constrictive bronchiolitis and other respiratory conditions.

The VA aims to publish the revised changes in the Federal Register by Sept. 30, 2024, which is the end of the current fiscal year, according to a Capitol Hill staffer and a health professional with knowledge of discussions on this issue.

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There are an estimated 300 to 400 veterans who have been diagnosed with constrictive bronchiolitis or other small airway injuries after receiving lung biopsies, according to a VA staffer who has worked extensively on this issue. That estimate pales in comparison to the number of veterans with other more common respiratory conditions. For example, as of Jan. 1, 2024 more than 7,000 veterans had claims approved for Chronic Obstructive Pulmonary Disease. More than 30,000 claims for asthma were approved.

U.S. Marines dispose of trash in a burn pit during a convoy to Patrol Base Sre Kalad in Khan Neshin District, Afghanistan. It is widely believed that the lung condition constrictive bronchiolitis among veterans is caused by exposure to smoke from burn pits. Photo by Cpl. Alfred V. Lopez/U.S. Marines/Handout via REUTERS.

But unlike asthma and other pulmonary conditions, CB cannot be diagnosed with traditional lung tests such as X-rays, CT scans or pulmonary function tests (PFT). A confirmed diagnosis requires an invasive lung biopsy, a test that can present significant costs and risks to the patient.

The NewsHour has requested updated VA data on how many veterans have been diagnosed with CB but has not received it.

Former VA doctor Allyn Harris says that the 300 to 400 number is “a huge underestimation,” which means the difficult path to diagnoses and benefits is likely felt more widely. “I bet it’s 10 times” what has been officially diagnosed, she said.

Veterans with CB experience severe shortness of breath and fatigue when exercising. But “ most people are told their issues are asthma or are told there is nothing wrong with them when they clearly have symptoms,” said Harris, who served as a pulmonologist at the Jackson VA Medical Center in Mississippi from 2014 to 2018.

“I find myself struggling, when I pull into a parking lot, even at the grocery store, because I know what’s going to happen,” former Army Sergeant Cynthia Aman, who served in Kuwait and Iraq in 2003 with the Missouri National Guard told the NewsHour in 2018. “If I have to park in the back of the parking lot, by the time I get inside, I’m so winded that it’s miserable for me to even do my grocery shopping.”

A challenging diagnosis

Harris said during her time with the VA, she started a clinic for Iraq and Afghanistan war veterans who experienced unexplained shortness of breath. “Patients would get to my clinic and say that they had been asking to see pulmonary for years and couldn’t get a referral because their tests were ‘normal.’”

Harris told the NewsHour she asked primary care clinics to refer to her any veterans who had “new onset of cough or shortness of breath since deployment.” With that change she began seeing more and more veterans, several hundred overall, with unexplained shortness of breath. “It was overwhelming how many there were and that was just in Mississippi.” Of the many who came in, about five veterans she saw decided to get lung biopsies. They were all positive for CB, she said.

Dr. Robert Miller, a professor of medicine at Vanderbilt University Medical Center, points to a Defense Department-funded study that reflects how widespread the condition is, and how difficult a diagnosis can be. It found that out of 380 service personnel who had shortness of breath while exercising and had deployed to South West Asia for at least six months, 32 percent were undiagnosed after undergoing a battery of tests. None of them got lung biopsies.

U.S. Secretary of Veterans Affairs Denis McDonough speaks at a town hall with veterans and veteran survivors about the PACT Act, at the Major Joseph R. “Beau” Biden III National Guard/Reserve Center, in New Castle, Delaware, U.S. December 16, 2022. REUTERS/Elizabeth Frantz

The VA defended its process for disability benefits for CB. A spokesman told the NewsHour by email that the lack of a dedicated diagnosis code for constrictive bronchiolitis has not significantly affected the awarding of disability compensation. “While there is no specific code for constrictive bronchiolitis, this does not impact the benefits that we provide,” the spokesman wrote.

How ratings work now

The VA provides monthly disability compensation to veterans for “disabilities, diseases, or injuries incurred or aggravated during active military service” according to the VA. In most cases, illnesses are assigned a diagnostic code and rating schedule.

For example, a veteran who lost one hand and one foot, and who has a spouse and child, would receive a diagnostic code of 5104, a 100 percent disability rating, resulting in $4,266 a month in disability compensation. That payment adds up to $51,000 a year and is tax free.

A veteran who has mild asthma and scored well on a pulmonary function test would get a diagnostic code of 6602, a 10 percent disability rating and $171 a month.

The VA said that under the current system, the agency uses analogous diagnostic codes to award benefits for constrictive bronchiolitis “based on that veteran’s individual experience and condition, and the severity of their condition, regardless of whether there is a specific code for that condition.”

Without a specific diagnostic code for CB, the VA assigns a code for what they consider to be a similar condition, such as bronchitis, bronchiectasis, asthma or emphysema.

WATCH: Supreme Court hears an Army reservist’s case involving exposure to burn pits in Iraq

Data provided to the NewsHour by the VA last summer showed that between October 2018 and July 2023, 48 veterans with CB received a disability rating of 100 percent, 50 veterans received a 50 percent disability rating, and 56 veterans received a zero disability rating. It’s not clear what criteria, including codes, led to these ratings. The NewsHour has requested updated VA data on how many veterans have been diagnosed with CB and the disability ratings awarded but has not received it.

“I do not know how they can say this without a code for CB,” said Miller, the professor of medicine at Vanderbilt University Medical Center. In his experience,“it is absolutely not the case” that veterans receive disability compensation when assigned an alternate code.

“There are a lot of patients that I say have CB and then get rated for asthma. There are patients that I say have CB and they also have sleep apnea … They get the 50% for sleep apnea. I have patients who have service-connected CB and get 0%”

To receive benefits with an alternate code, a veteran with CB must also score poorly on a pulmonary function test (PFT), take corticosteroids, or have incapacitating episodes of lung infections in order to receive disability compensation.

“I have dozens of patients who have zero percent [disability] rating because their [pulmonary function tests] do not meet criteria for these conditions. Using other diagnoses for other conditions may work, but it has not worked for CB,” Miller said.

“The only folks I’ve seen get a 100 percent rating are ones I have had to fight hard for,” said attorney Kerry Baker, who previously led the VA’s legislative and policy staff and now represents veterans struggling to obtain VA coverage.

This file photo shows a member of the 84th Combat Engineer Battalion using a bulldozer to maneuver trash and other burnable items around in the burn pit at the landfill of Logisitics Support Area Anaconda in Balad, Iraq. It is widely believed that the lung condition constrictive bronchiolitis among veterans is caused by exposure to smoke from burn pits. Photo taken in 2004 by Pfc. Abel Trevino/U.S. Army/Handout via REUTERS.

What experts recommend

Miller has been among the most vocal advocates calling on the VA to fix the problem caused by the lack of a specific diagnostic code and rating schedule for CB.

He was the principal investigator of a seminal study in 2011 about soldiers from Fort Campbell, Kentucky, who had been exposed to smoke from a 2003 fire in northern Iraq at the Mishraq State Sulfur Mine Plant. In addition to exposure to the Mishraq fire, it is widely believed that constrictive bronchiolitis among veterans is caused by exposure to smoke from burn pits – massive fires used regularly at overseas bases to dispose of all manner of garbage, from car tires to chemical solvents to plastics and more.

Miller insists that the VA must “stop saying that veterans are not affected by this … My patients have had to leave military service because of shortness of breath following deployment.” He points out that it’s been two years since two expert committees were convened by the VA and recommended how to solve the problem of the VA not having an adequate code.

Between November 2021 and February 2022, the VA’s Airborne Hazards and Burn Pits Center of Excellence in New Jersey convened a panel of VA and non-VA subject-matter experts to recommend diagnostic test and associated terminology for respiratory symptoms for veterans who suffer from lung ailments as a result of deployment.

WATCH: Veteran exposed to toxic burn pits wins precedent-setting lawsuit

The panel agreed for the first time on an overarching definition for constrictive bronchiolitis.

The committee also embraced the term “Deployment-Related Respiratory Disease,” (or DRRD), which includes CB and other conditions in which the small airways of the lungs are damaged. They defined DRRD as a “broad set of conditions observed in previously deployed individuals with respiratory symptoms and to serve as the preferred term for the individual who remains without a confirmed specific diagnosis even after an extensive, albeit noninvasive, workup.”

In September 2022, a subset of the panel recommended new criteria for rating disability for veterans with Deployment-Related Respiratory Disease and for constrictive bronchiolitis. “In light of diagnostic uncertainty, symptom severity should be the primary category for rating rather than any one objective test finding,” the committee advised. They recommended that the greater the impairment someone experiences from symptoms, the higher the disability rating.

More importantly, they recommended a rating schedule that did not require an invasive lung biopsy, creating a pathway for veterans to actually receive disability compensation for their condition.

“The test to prove existence of constrictive bronchiolitis is actually as intrusive in many cases as the disease itself,” VA Secretary Denis McDonough said on the NewsHour in September 2022.

A ‘cumbersome’ process with little progress

President Joe Biden holds the “PACT Act of 2022” after signing it during a ceremony in the East Room of the White House, Wednesday, Aug. 10, 2022, in Washington. (AP Photo/Evan Vucci)

McDonough has expressed support for updates to the VA’s Schedule for Rating Disabilities, including finding better methods of detecting CB.

“We’re updating that set of guidance and that set of regulations for the first time in something like 60 years … to ensure that we’re operating off the most recent up-to-date science,” McDonough said in a June 2022 news conference.

More than a year later, there was no diagnostic code and rating schedule.

“I’m not happy about where this stands. I want to make sure every veteran gets the care and the benefits that they have earned,” McDonough said in an August 2023 interview with the NewsHour’s Amna Nawaz.

Eight months later, there have not been any changes.

It’s been two years since the panel recommendations. The process for revising VA’s rules “has always been cumbersome,” Baker said. But he and other critics say “I just don’t see anything from my vantage point that tells me it’s actually being treated as an urgent priority.”

Congress and the White House have pushed for changes to help veterans receive disability compensation. In August 2022, President Joe Biden signed the PACT Act, which designated constrictive bronchiolitis and 14 other conditions as “presumptives.” In other words, if a veteran served in the act’s specified war zones, and has any one of these conditions, it would be presumed that their condition was caused by their military service and they would automatically qualify for disability compensation.

The VA claims that many veterans with these other conditions seeking benefits under the PACT Act have been successful.

But advocates working on the issue say without a diagnostic code and rating schedule for CB, the PACT Act cannot be adequately implemented.

“The VA has been aware of the issue of CB for over two decades,” said Rosie Torres, executive director of Burn Pits 360, which advocates for veterans with illnesses related to toxic exposure. Her husband, Le Roy Torres, has CB. Together, they stood next to Biden when he signed the PACT Act into law. She says the VA has promised to fix this problem for years and that she will not believe these promises until the fix is actually made. “One and a half years after PACT Act and the fact that VA still does not have a code is ridiculous.”

“The VA has made tremendous progress on expanding benefits, but this has clearly been an area that’s been overlooked,” former VA Secretary Dr. David Shulkin said. “Our system relies upon codes and documentation in order for it to work… We’re all watching the clock with the election, right?

Shulkin added that political appointees in government departments are loath to make any major changes in policy close to an election as a courtesy to the incoming administration.

“I would just say there’s no time like the present, now’s the time” to assign a diagnostic code and rating schedule to this condition, he added.

Comedian Jon Stewart, with John Feal, an advocate for first responders, speaks to reporters about their effort to raise awareness for U.S. veterans suffering from illnesses caused by military toxic exposures during a 2021 news conference on Capitol Hill. File photo by Jonathan Ernst/Reuters.

“A lot of great work has been done, the rock is almost at the top of the hill,” comedian and veteran advocate Jon Stewart told the NewsHour. Stewart had been a scathing critic of the Department of Veteran Affairs practice of requiring veterans to prove their illnesses were caused by their military service. But with the passage and implementation of the PACT Act, Stewart thinks the VA has made substantial improvements.

“They’ve done an awful lot. They’ve really tried to move heaven and earth, I have been impressed with the change of attitude,” Stewart said. There has been “a very good faith effort on their end to get not only people covered, but to get the information out to them.” But he says “everybody’s come too far and suffered too much. We just got to get this last piece.”