Press Release: Response to Proposed Rule for Veterans with Constrictive Bronchiolitis

For Immediate Release September 17, 2024

Re Proposed Rule for Veterans with Constrictive Bronchiolitis

Robert Miller, MD Robert.miller@VUMC.org

Julie Tomaska, PhD, Julie.tomaska@burnpits360.org

Rosie Torres, Executive Director Rosie.torres@burnpits360.org

The Department of Veteran Affairs (VA) has released a Supplemental Notice of Proposed Rulemaking (SNPRM) proposing a diagnostic code for Constrictive Bronchiolitis (CB) to the VA Schedule for Rating Disabilities.

CB is a respiratory condition which affects Post 9-11 deployers. It is the result of inhalational lung injury, most notably from burn pits in Afghanistan and Iraq. It is a condition that is challenging to diagnose as most of the affected deployers have normal non-invasive testing despite having severe pathologic change on lung biopsy. Affected Veterans typically have exercise limitation severe enough to end their military career.

DOD data confirms that most of the Post 9-11 deployers experienced toxic inhalation during deployment. The VA sponsored Modified Delphi study confirmed the finding of toxic lung injury in this group and emphasized the fact that non-invasive testing fails to identify those affected.

CB is one of the twenty-three presumptive diagnoses outlined in the PACT Act of 2022. Creating a new diagnostic code for CB potentially enhances the VA’s ability to track CB. Without accompanying disability criteria, it does not help Veterans with disability determination. The VA will continue to require abnormal pulmonary function testing (PFTs) and/or cardiopulmonary exercise testing (CPET) to assess disability. This contradicts what has been known about constrictive bronchiolitis for over fifty years and the VA’s own experts responsible for drafting the Delphi Study.

The bottom line is that PFTs and CPET are not reliable studies to evaluate CB. Extensive, untreatable and career ending lung injury can exist in the setting of normal testing. The VA’s dismissal of recommendations from the Delphi study—an expert consensus commissioned by the VA itself—is not just a minor oversight but a substantial failure and injustice to address the real needs of Veterans suffering from deployment-related respiratory diseases. Here’s why ignoring the Delphi criteria is a glaring issue and how it severely impacts Veterans:

Ignoring Delphi Criteria: A Critical Flaw in VA's Approach

1. Neglecting Expert Recommendations: 
1. The Delphi study, conducted by experts to provide guidance on best practices for evaluating Veterans with CB and other deployment-related respiratory diseases, explicitly highlighted that relying solely on non-invasive tests like PFTs is inadequate. CB often presents with normal PFTs despite severe underlying pathology, which can only be confirmed by a biopsy.
2. The VA's current ruling dismisses these findings and continues to prioritize outdated and unreliable PFT results as the main criteria for disability ratings. This negligence undermines the very expertise that the VA sought to enhance care for Veterans, eroding trust in the VA’s commitment to evidence-based policy.
2. Direct Harm to Veterans with Biopsy-Confirmed CB:
1. By refusing to incorporate the Delphi criteria, the VA effectively denies proper disability ratings and benefits to Veterans who have already undergone invasive biopsies confirming CB. This is not just a bureaucratic oversight—it is a deliberate choice that forces Veterans to undergo redundant and often meaningless additional tests, once again putting the burden of proof on them and delaying access to crucial benefits and specialized healthcare
2. For Veterans with biopsy-proven CB, the evidence of their condition is clear and definitive. The VA's insistence on non-invasive test results, which are often normal in CB cases, directly harms these Veterans by perpetuating a flawed evaluation process that fails to recognize their real debilitating level of impairment. Acknowledging biopsy-confirmed diagnoses without requiring redundant testing is essential for providing the comprehensive and compassionate care that Veterans deserve.
3. Failure to Provide Comprehensive and Timely Care:
1. Ignoring the Delphi recommendations to establish VA centers of excellence specifically for CB and related conditions leaves Veterans without access to specialized care that could significantly improve their health outcomes. This is not a trivial matter; it is the duty of the VA and moral obligation to provide comprehensive and effective healthcare to those who have served and sacrificed for their country.
2. The VA's current policy approach prolongs suffering by delaying and denying access to specialized diagnostics, care, and appropriate treatments. Veterans are forced to navigate a convoluted system that prioritizes bureaucratic processes over evidence-based, patient-centered care, significantly affecting their quality of life and overall well-being.
3. The trajectory of these diseases and the risk of chronic illness creates economic and emotional impact many times forcing Veterans to experience unemployment, homelessness and sometimes even suicide.
4. Contradiction to the PACT Act’s Purpose:
1. The PACT Act was designed to expand healthcare and benefits for Veterans exposed to toxic substances. The VA’s disregard for the Delphi study undermines the Act’s very purpose by continuing to use inadequate criteria for diagnosing and evaluating CB. This is a betrayal of the Act's intent and a failure to honor the commitment made to Veterans.
2. The current policy effectively excludes many Veterans with CB from the benefits they deserve, particularly those with normal PFTs but definitive biopsy evidence. This exclusion directly contradicts the comprehensive care and support that the PACT Act promises.
5. Incomplete Evaluation Criteria and Need for Policy Change:
1. The VA disability determination process overly relies on abnormal PFTs as a key criterion for rating respiratory conditions. This approach fails to adequately consider biopsy-proven diagnoses, which provide definitive evidence of CB, a serious and debilitating condition. As a result, Veterans with normal PFT results, even when they have a positive biopsy confirming CB, may be denied a disability rating or receive a rating that does not accurately reflect the severity of their condition.
2. To address this gap, biopsy findings—which provide conclusive evidence of CB—must be integrated into the disability rating criteria. Relying solely on PFT results overlooks critical diagnostic information and underestimates the true severity of the disease. Incorporating biopsy-proven CB findings into the evaluation process would more accurately capture the extent of impairment, ensuring fair and appropriate disability compensation for affected Veterans.
3. There is an urgent need for the VA to revise its disability rating criteria to include biopsy-confirmed cases of CB, regardless of PFT results. This change would ensure that Veterans with normal PFTs but a positive biopsy for CB receive a disability rating and benefits that truly reflect the impact of their condition. By updating the criteria, the VA can provide fair and comprehensive support to all Veterans affected by CB, aligning with the intent of policies like the PACT Act to provide comprehensive care and support for service-related health conditions

Conclusion

The VA's decision to ignore the Delphi criteria for CB is a critical failure that directly harms Veterans by denying them accurate diagnoses, timely care, and fair disability compensation. This ruling must be urgently revised to align with expert consensus and the true needs of Veterans, as mandated by the PACT Act. Anything less is unacceptable and a disservice to those who have sacrificed for their country. The VA must act now to ensure that the evaluation and compensation for Veterans with CB are fair, comprehensive, and reflective of their true needs and experiences. The VA and DoD need to establish clear clinical guidelines and treatment pathways like the World Trade Center Health Program (WTCHP). The WTCHP has proven effective in diagnosing and treating individuals affected by exposure to toxic substances during the 9/11 attacks. Veterans exposed to burn pits and other toxic chemicals during deployment deserve similar structured and comprehensive care. The lack of standardized care for lung injuries and other conditions tied to toxic exposures under the PACT Act is a critical gap. While the PACT Act is a significant step forward, without specific clinical pathways, many veterans will continue to face delayed or inadequate care. The inclusion of established protocols, like those in the WTCHP, would ensure that veterans receive timely, specialized treatment for respiratory diseases, cancers, and other conditions linked to their service. Adopting these pathways would not only help in early diagnosis and intervention but also provide a clear system for ongoing monitoring and follow-up care. This could prevent the long waits, misdiagnoses, or lack of access that currently plague many veterans. The VA and DoD must prioritize this issue to provide the comprehensive care veterans have earned and deserve.

Reference: Falvo M, Sotolongo A, Osterholzer J, Robertson M, Kazerooni, E, Amorosa J, Garshick E, Jones K, Galvin J, Kreiss K, Hines S, Franks T, Miller R, Rose C, Arjomandi M, Krefft S, Morris M, Polosukhin B, Blanc P, D’Armiento J. Expert consensus on constrictive bronchiolitis in previously deployed individuals: A Delphi study. Chest https://doi.org/10.1016/j.chest.2022.10.031