When Cynthia Daniels was on active duty as an Army reservist in 2003, she routinely did 80 sit-ups in one minute and could run a mile in six minutes. But a decade after returning from a yearlong deployment to Kuwait, Iraq and Qatar, she started finding it hard to catch her breath even during mild exertion.
When PBS News Hour profiled Daniels in 2018, she was unable to walk from her car into the grocery store without getting winded. Jogging became out of the question. After more than two years of hearing doctors say they couldn't find anything wrong, she had finally gotten a tongue-twister diagnosis: Constrictive bronchiolitis.
Affected veterans like Daniels typically experience extreme fatigue, shortness of breath and multiple conditions that can impede their ability to work.
Daniels, now 46, said her health has only worsened over the past six years.
"Washing my hair is exhausting for me," she said in an interview this week. "Last night…I washed my hair and I was just done. I'm just tired, short of breath."
Daniels is not alone. Hundreds of service members, possibly more, have developed incurable small-airways disease after exposure to smoke from burn pits. These massive fires were used regularly at overseas bases to dispose of all manner of garbage, from car tires to chemical solvents to plastics. Those living nearby report having regularly breathed air thick with putrid smoke.
Yet, veterans like Daniels have struggled for years to get benefits for constrictive bronchiolitis or "CB," because the U.S. Veterans Affairs Department has had no diagnostic code for it nor a means of determining its severity in any given patient.
The VA is now facing urgent calls to quickly finalize a policy that would enable disability compensation for former service members who suffer from this debilitating lung condition, with a political deadline looming in less than five weeks.
Any further progress on offering benefits to those with CB is thought less likely to occur once Republicans take control of both the White House and Congress in January.
Under pressure from doctors, advocates and lawmakers, the VA took a major step in September by proposing a change in how it handles CB claims.
But critics say if implemented as-is, the draft rule could extend the ongoing disability-coverage problem indefinitely rather than resolve it. The new rule relies on tests that are unable to detect CB if used alone for diagnosis, as the VA proposes, according to medical experts.
The VA met with veterans behind closed doors Dec. 12 in what the agency termed a "listening session" about CB and other service-related lung conditions.
The agency aimed "to gather insights and experiences" during the virtual session on these lung conditions, according to an invitation obtained by PBS News. But there was almost no discussion of the lung ailments or rulemaking process that would allow veterans to qualify for CB-based disability status, according to participants who asked not to be identified in discussing the meeting.
A U.S. Army soldier watches over a burn-pit at Forward Operating Base Azzizulah in Kandahar Province, Afghanistan, in 2013. Photo by Andrew Burton/Reuters
Veterans' advocates see this as a make-or-break moment. "There's certainly time left" to correct shortcomings of the proposed rule, Dr. David Shulkin, a former VA secretary who served under former Presidents Obama and Trump, told PBS News late last month. But the agency would have to act quickly.
"It is very important that the Biden administration, including the current VA leadership, address this concern before the transition," Dr. Robert Miller, a leading medical expert in constrictive bronchiolitis, told PBS News in a Dec. 4 email.
"My concern is that all veteran disability benefits will be at risk" after President-elect Donald Trump's Jan. 20 inauguration, Miller said, "and that there will not be an appetite to modify existing disability benefits for this respiratory disorder."
The billionaire duo that Trump has tapped to head a non-governmental "Department of Government Efficiency," Elon Musk and Vivek Ramaswamy, said last month that $500 billion in annual "unauthorized appropriations" – expenditures with expired congressional authorizations – are a major source of budget cuts they will pursue.
Health care for veterans constitutes the largest portion of these, with $119 billion in unauthorized fiscal year 2024 expenditures, according to the Congressional Budget Office.
Trump said last month that he would nominate former Rep. Doug Collins, a Republican from Georgia and a chaplain in the Air Force Reserve, as his VA secretary. It's unclear based on Collins' record what his views are on disability coverage for burn-pit related injuries.
Sen. Jon Tester, D-Mont., who chairs the Senate Veterans' Affairs Committee, has worked to close the disability compensation gap for CB. But Tester lost his seat in last month's elections to a Republican opponent.
Sen. Jerry Moran, R-Kan., who has supported key health care initiatives throughout his 15 years in the chamber, is expected to chair the Senate VA Committee starting next month.
"This committee has worked to address major challenges veterans face, including … providing health care for veterans exposed to toxic substances during their military service," Moran, then the ranking Republican, said at a hearing last May. "It is up to the VA workforce and leadership to faithfully execute the legislation passed by Congress and deliver the care and benefits our veterans rely on."
Constrictive bronchiolitis was one of 14 conditions the bipartisan 2022 PACT Act designated as "presumptives." If a veteran served in the law's specified war zones – such as Iraq or Afghanistan – and has been diagnosed with any of the listed conditions, the disability is presumed to have resulted from military service and would automatically qualify for compensation.
However, this PACT Act provision cannot be adequately implemented without a clinical code that covers constrictive bronchiolitis, veterans' advocates say.
In September, the agency opened a month-long period for public comment on its draft guidelines for diagnosing CB and rating its extent, as a basis for determining benefits. As it turned out, the VA's proposed handling of CB disability coverage sparked a firestorm of criticism from veterans' advocates and medical specialists.
Much of the debate boils down to the difficulty of diagnosing CB. Even those who are severely impaired by the lung disease tend to receive "normal" results in standard clinical evaluations. Yet, VA officials now propose relying on these same measures, mainly pulmonary function tests, to determine disability compensation.
A group of senators warned last spring that this approach was inadequate and sent a three-page letter to VA Secretary Denis McDonough urging action on the issue.
"We understand constrictive bronchiolitis is difficult to diagnose without invasive procedures," reads the April letter, obtained by PBS News. "However, VA's use of pulmonary functions tests" is not "sufficient" to "accurately rate constrictive bronchiolitis claims," the lawmakers asserted.
Physicians and other critics argue that basing disability benefits on standard pulmonary tests alone – without also taking into account a veteran's symptoms and other clinical findings – would lead to yet more rejected disability claims.
"The problem is that many veterans with significant impairment from CB have minimal or no detectable abnormalities" when undergoing standard respiratory clinical tests, Joyce Johnson, a former VA physician, wrote in public comments.
"The typical veteran diagnosed with CB had to leave military service due to failing to meet DOD physical fitness criteria," said Miller, a professor of medicine at Vanderbilt University Medical Center and a vocal advocate for burn-pit exposure victims.
None of Miller's 100 patients with biopsy-confirmed CB would qualify for disability benefits under the VA's proposed rule, he said. "Their x-rays, pulmonary function tests and exercise tests were almost always normal."
Julie Tomaska, who deployed to Balad Air Force base in 2005 and 2007 as an Air Force reservist, wrote on the VA's website that she'd "endured extensive testing under the VA system." Despite having gotten all the standard tests the VA now lists, her results came back normal.
"I know firsthand how flawed the current evaluation process is for constrictive bronchiolitis," wrote Tomaska, a board member of Burn Pits 360, the leading advocacy organization for veterans injured by toxic exposure. "It wasn't until I underwent an invasive open lung biopsy that my diagnosis was finally confirmed," she said.
Her experience is not unusual. Miller and other experts note that for many vets with CB symptoms, a lung biopsy has been the only definitive way to prove a diagnosis.
McDonough and VA critics alike say that ailing vets should be spared from undergoing invasive tests like biopsies as a prerequisite for receiving disability benefits. What they differ over is how instead to qualify those veterans who are suffering from CB.
"We need a straightforward definition for [CB] and an even more straightforward test, so that we can … establish the existence of the condition" in patients before granting disability claims, McDonough told PBS News last year.
VA-convened medical advisory panels have long concluded that no such easy answers exist.
Physicians advising the agency under its so-called "Delphi Study" do see a possible path forward: In 2022, a subgroup spelled out non-invasive medical work-ups that could substantiate a "probable" diagnosis of service-related breathing disabilities.
The Delphi advisory panels said that lung doctors could use a combination of symptoms and test results to diagnose affected veterans with a more general condition, which advisory panels have dubbed "deployment-related respiratory disease" or "DRRD." This catchall term would include CB and other serious conditions involving small-airways damage, and need not be confirmed by an invasive biopsy. Part of the diagnostic process should also rule out "other known respiratory diagnoses," the expert advisors said.
The main Delphi panel report, publicly released last year, states that DRRD should become "the preferred term for the individual who remains without a confirmed specific diagnosis even after an extensive, albeit noninvasive, workup."
To determine just how disabling DRRD is for a particular veteran filing a claim, the agency could review a treating physician's report on the patient's medical history, symptom severity, and objective tests. Taken together, these measures offer disease markers. For example, veterans with breathing difficulty "even at rest," and who experience "frequent and prolonged" inability to work due to their condition, could be considered disabled, according to the 2022 recommendations.
"In light of diagnostic uncertainty, symptom severity should be the primary category for [disability] rating rather than any one objective test finding," the report states.
"They know that the science does not support using [pulmonary function tests alone] to assess disability with CB and DRRD," Miller, who participated in the VA advisory groups, told the News Hour. Two years after receiving detailed recommendations, "the VA has chosen not to issue any disability criteria" reflecting the panel consensus, he wrote in public comments.
Dr. Cecile Rose, who also served on the VA-convened panels, told PBS News that the agency should "adopt an approach to disability rating for bronchiolitis that has been developed, reviewed, and recommended by respiratory impairment/disability experts." Rose directs the Center for Deployment-Related Lung Disease at National Jewish Health in Denver, which has evaluated more than 350 service personnel with persistent and often disabling respiratory symptoms after deploying to Southwest Asia and Afghanistan.
Shulkin, the former VA secretary, said the distinction between physicians setting medical standards and a federal agency determining disability benefits is at the heart of the longtime CB coverage discrepancy.
Pulmonary function tests, for example, don't typically assess shortness of breath, which "is actually what limits a person's ability to work, to exercise, to function," he said. "That's what's keeping them from normal activity."
A senior official at the VA's Veterans Benefits Administration said, though, that the agency is focused on confirming a veteran's disability and its effects on productivity, rather than on diagnostic nuances.
"There is a difference between diagnosing and assessing for benefits impairment, for your earnings ability," said the official, who was authorized to speak only without being named. "Our rating criteria is not a clinical diagnostic criteria."
VA benefits administrators think the tests they proposed for determining compensation for CB best appraise a veteran's "ability to function and thus ability to work," the official said.
VA benefits staff have "a complete lack of understanding" of what it means to have disabling shortness of breath while still passing standard pulmonary function tests, Shulkin said. "They've decided to rely on a diagnostic test that doesn't assess appropriately."
"This is why you don't want to have disability [policymaking] people evaluating medical conditions," added Shulkin, who sits on the advisory board of Burn Pits 360, the organization advocating for veterans affected by toxic exposure.
There's dismay among some veterans that McDonough and his staff might be taking advantage of diagnostic complexities and a sluggish rulemaking process to advance an unstated objective: capping costs.
"I'm concerned the VA is worried about costs and the number of claims they will get," Miller said after last week's virtual meeting. "It's a legitimate concern, but one they need to be prepared for. The [Delphi] committee provided an outline on how they can deal with it."
For years, many patients have depended on diagnoses other than CB to qualify for VA disability benefits, even if the primary impediments to leading a normal life have been symptoms related to constrictive bronchiolitis.
Trash piled along the road near the burn pit for Camp Taji, north of Baghdad in 2010. Soldiers at the camp complained of headaches, coughs, sore throats, irritated eyes and skin rashes. Photo by Mayra Beltran/Houston Chronicle/Getty Images
Jimmy Williams, whose 30 years in the Army included four deployments to Iraq and Afghanistan, is one such veteran. He received a CB diagnosis about 20 years ago but got only a 10% disability rating for respiratory issues, linked solely to his sleep apnea.
"I always have chest pain all the time from breathing, my lungs hurt all the time," Williams told PBS News, noting that last January, he finally received a 100% disability rating for non-CB ailments. "I just have a hard time doing normal stuff."
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Veterans Affairs has granted nearly 80% of disability claims that included a CB diagnosis, even though the small-airways disease elements of the claims were denied, Terrence Hayes, the VA press secretary, told the News Hour in September. Affected applicants received an average $25,000 per year in non-CB disability benefits, he said.
Kerry Baker, an attorney who represents vets battling the VA for disability benefits, insists that this tangential approach to dispensing compensation is an inadequate substitute for the VA directly recognizing deployment-related lung disorders under the PACT Act.
"There are plenty of veterans out there whose only disability is the respiratory disability," said Baker, who previously led the VA's legislation and policy staff. "Those veterans have severe functional impairments and are getting zero or maybe 10% [ratings], when their disability should deserve much higher," he told the News Hour.
In the invitation for its listening session last week, the VA referenced both CB and DRRD, a possible indication of evolution in the leadership's thinking. But none of the designated speakers, nor McDonough – who joined the 90-minute call for its last two minutes – addressed VA disability benefits for these respiratory disorders, according to participants.
"There were 81 people on the call and none of them had knowledge of this topic," Miller told PBS News. He said he spoke for about four minutes during the call about having treated vets with CB since 2004, and pleaded with the VA officials to finalize the rule before the administration changes next month.
"There was silence," Miller said afterward. "They didn't respond at all."
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