Lessons from 9/11 for Supporting Veterans Exposed to Military Environmental Hazards

Veterans' Issues in Focus

Published Apr 23, 2024

by Ramya Chari, Heather Marie Salazar, Lauren Skrabala

U.S. Army soldiers watch garbage burn in a burn-pit at Forward Operating Base Azzizulah in Maiwand District, Kandahar Province, Afghanistan, February 4, 2013, photo by Andrew Burton/Reuters

U.S. Army soldiers watch garbage burn in a burn-pit at Forward Operating Base Azzizulah in Maiwand District, Kandahar Province, Afghanistan, February 4, 2013

Photo by Andrew Burton/Reuters

Exposure to environmental hazards exacerbates the risks inherent in military service, but many veterans do not experience the health consequences until many years later. The 2022 Sergeant First Class Heath Robinson Honoring Our Promise to Address Comprehensive Toxics (PACT) Act tasked the U.S. Department of Veterans Affairs with streamlining benefits and health care eligibility for certain veterans who have been exposed to military hazards. However, questions and concerns remain about the equitability, scientific robustness, and timeliness of the associated decisionmaking processes. There are opportunities to use structures from existing programs—specifically, the World Trade Center Health Program—as a template to improve engagement with veterans and their families, caregivers, providers, and advocates to ensure that their experiences and needs are heard, understood, and an integral part of the PACT Act's implementation.

Service members can be exposed to environmental hazards from many different sources, including nuclear and radioactive waste sites, open-air trash combustion (burn pits), chemical warfare agents, and even contaminated drinking water—and research suggests that these exposures have been widespread. For example, in a 2022 survey of veterans who participated in Wounded Warrior Project programs, 80 percent of respondents who had deployed as part of Operation Enduring Freedom, Iraqi Freedom, or New Dawn reported that they had been exposed to burn pits (Marx et al., 2022, p. 90).

In recent decades, the advocacy of Gulf War and post-9/11 veterans and their supporters has underscored the pressing need to address the health implications of service members' exposure to toxins, particularly for those who deployed to Afghanistan and Iraq, where waste of all kinds was often disposed of in open burn pits. This type of advocacy mirrored past efforts by Vietnam War veterans, their caregivers, and survivors. The last U.S. troops left Vietnam in 1973, but these veterans did not receive benefits to compensate for exposure to Agent Orange and other tactical herbicides until 1991 (through the Agent Orange Act, Pub. L. 102-4). And it took another 28 years for Congress to extend benefits to veterans who served offshore in that conflict through the Blue Water Navy Vietnam Veterans Act (Pub. L. 116-23, 2019).

In 2014, Congress required the U.S. Department of Veterans Affairs (VA) to establish the Airborne Hazards and Open Burn Pit Registry in response to mounting evidence of a connection between unusual patterns in cancer diagnoses and other illnesses and the environmental exposures associated with military service during the Gulf War in the early 1990s; Operations Enduring Freedom, Iraqi Freedom, and New Dawn; and the overall Global War on Terrorism. The registry has given service members and veterans an avenue to report their exposure to toxins, document their symptoms, and provide data to VA for research purposes. However, participation in the registry is voluntary and does not guarantee a veteran's eligibility for VA benefits or health care.

On August 10, 2022, President Joe Biden signed the Sergeant First Class Heath Robinson Honoring Our Promise to Address Comprehensive Toxics (PACT) Act (Pub. L. 117-168, 2022), named for an Ohio veteran who succumbed to lung cancer after being exposed to burn pits while deployed to Iraq. The PACT Act was the most significant piece of legislation and largest expansion of benefits related to military toxic exposures since the Agent Orange Act. It addressed the health consequences of toxic exposures during military service by significantly expanding access to VA benefits and health care. The PACT Act directed VA to establish a consistent set of criteria for determining which conditions are presumed to be related to exposure to environmental hazards in the course of military service. It also included funds for VA to conduct new health and exposure research studies and to improve employee training and veterans' access to resources.

As of mid-February 2024, VA had screened more than 5.2 million veterans for toxic exposures, a crucial step in catching and treating health conditions that has also provided more data points for research (VA, 2024). Veterans and survivors had filed almost 1.4 million PACT Act claims, and VA had already allocated more than $2.2 billion in benefits (VA, 2024; VA, 2023b). As of the same period, VA had approved 769,443 of the 1,015,937 claims that it had reviewed, a 75.2-percent approval rate (VA, 2024).

How Has the PACT Act Changed Veterans' Access to Health Care and Disability Benefits?

Typically, veterans whose conditions do not otherwise make them eligible for VA health care or disability benefits have had to undergo an often lengthy process to prove that their condition has a direct service connection. In some cases, VA has used a streamlined process to identify eligible veterans, assess their lifelong care needs, and provide them with benefits in a timely manner by relying on a list of presumptive medical conditions—for example, conditions presumed to be linked to exposure to toxic burn pits or other environmental hazards during military service (VA, 2022d). Prior to the PACT Act's passage, VA had the authority to use a rule-making process to identify new presumptive conditions, which it did for asthma, rhinitis, and sinusitis in 2021 and certain rare respiratory cancers in 2022 (VA, 2021; VA, 2022a). Under the PACT Act, VA coverage for these conditions became law. The act also specifically identified additional geographic locations, time frames of military service, and health conditions, establishing a presumptive service connection for certain groups of veterans that VA had not identified through the rule-making process. This means that even if a veteran does not have proof that their symptoms are directly related to exposure, they would be presumptively eligible. These changes required VA to determine the affected veterans' eligibility for benefits.

Establishing a causal link between military exposures and medical conditions is scientifically complex, in part because there can be a long delay between exposure to a toxin and the onset of symptoms. The PACT Act directed VA to revise its presumptive decisionmaking process and enhance the scientific strength of its decisions. With the addition of more than 20 new categories of presumptive health conditions in the PACT Act, VA has expanded benefit eligibility to more cohorts of veterans (VA, 2023c). Table 1 shows the list of presumptive medical conditions under the PACT Act as of late 2023 for veterans who served in the locations and during the periods that either VA has identified or the PACT Act defined as having a high risk of exposure to burn pits and other environmental hazards, which are shown in Table 2. The tables focus on veterans who served during and after the Gulf War (1990–1991) and since September 11, 2001 (post-9/11 veterans), but the PACT Act also prompted an expansion of benefits for Vietnam War–era veterans and smaller groups of radiation-exposed veterans.

Table 1. Cancers and Other Medical Conditions Presumed to Be Related to Military Exposures Among Gulf War–Era and Post-9/11 Veterans

Presumptive Cancers

  • Brain cancer
  • Gastrointestinal cancer
  • Glioblastoma
  • Head cancer
  • Kidney cancer
  • Lymphoma
  • Melanoma
  • Neck cancer
  • Pancreatic cancer
  • Reproductive cancer
  • Respiratory cancer

Other Presumptive Health Conditions

  • Asthma diagnosed after service
  • Chronic bronchitis
  • Chronic obstructive pulmonary disease (COPD)
  • Chronic rhinitis
  • Chronic sinusitis
  • Constrictive bronchiolitis or obliterative bronchiolitis
  • Emphysema
  • Granulomatous disease
  • Interstitial lung disease
  • Pleuritis
  • Pulmonary fibrosis
  • Sarcoidosis

SOURCE: VA, 2023d.

NOTE: Vietnam War–era veterans and small groups of radiation-exposed veterans also have a set of presumptive cancers and conditions, which VA has expanded under the PACT Act.

Table 2. Geographic Locations and Periods of Service Presumed to Be Related to Military Exposures Among Gulf War–Era and Post-9/11 Veterans

On or After September 11, 2001

  • Afghanistan
  • Djibouti
  • Egypt
  • Jordan
  • Lebanon
  • Syria
  • Uzbekistan
  • Yemen
  • Airspace above any of these locations

On or After August 2, 1990

  • Bahrain
  • Iraq
  • Kuwait
  • Oman
  • Qatar
  • Saudi Arabia
  • Somalia
  • United Arab Emirates
  • Airspace above any of these locations

SOURCE: VA, 2023d.

NOTE: Vietnam War–era veterans and small groups of radiation-exposed veterans also have a set of presumptive locations and periods of service, which VA has expanded under the PACT Act.

Pressing Issues

Through the PACT Act's expansion of VA's list of presumptive conditions, more than 3.5 million veterans who may have been exposed to burn pits and other environmental hazards became exempt from the burdensome task of proving a direct link between their military service and medical conditions (VA, 2022c; Hall et al., 2022). However, without a robust, sustainable strategy for determining eligibility for VA benefits, there is a risk that service members and veterans who are at risk of health consequences from currently unknown or understudied exposures could be left behind.

Advocacy Is Critical in Gaining Policymaker Attention and Support

Advocacy has long been critical in encouraging Congress to authorize and appropriate funding for veterans' benefits related to military toxic exposures. Vietnam War–era veterans spent years advocating for their benefits after being exposed to tactical herbicides, such as Agent Orange. Although some Gulf War–era and post-9/11 veterans have received benefits for military toxic exposures since that time, the PACT Act marked a massive expansion decades in the making.

As VA refines its process for linking health conditions to military service, it can learn from the experiences of 9/11 responders and survivors and the policy advocacy that resulted in the James Zadroga 9/11 Health and Compensation Act (Pub. L. 111-347, 2011).

The terrorist attacks of September 11, 2001, led to a devastating loss of life far beyond that infamous date. In New York City, survivors, bystanders, responders, and recovery and cleanup personnel at the World Trade Center site were exposed to toxic smoke, dust, and hazardous chemicals. Congress quickly established the September 11th Victim Compensation Fund, which—like other sources of funds for victims and their families—was intended primarily to compensate for loss of life as a direct result of the attacks. It took another decade for Congress to establish a dedicated federal program to support those who died in the months and years that followed. New York City police officer James Zadroga was the first police officer to die from that exposure in 2006 at the age of 34. Zadroga's New York City Police Department disability claim was initially denied, and he struggled to get a diagnosis (Smith, 2006). On January 2, 2011, after almost a decade of negotiations, President Barack Obama signed the Zadroga Act into law.

The new law explicitly acknowledged a link between specific medical conditions and environmental hazards at the World Trade Center site; it also reauthorized the Victim Compensation Fund and gave victims more time to file for compensation. However, these benefits would be relatively short-lived. By 2019, the government began reducing payments to those who depended on the funding for their medical treatment, culminating in a widely publicized House Judiciary Committee hearing with testimony provided by responders, survivors, and celebrity comedian Jon Stewart. "They did their jobs," Stewart said of the 9/11 responders. "Eighteen years later, do yours" (Siddiqui, 2019). A month later, Congress passed and President Donald Trump signed the Never Forget the Heroes: James Zadroga, Ray Pfeifer, and Luis Alvarez Permanent Authorization of the September 11th Victim Compensation Fund Act (Pub. L. 116-34, 2019).

Brielle Robinson, the daughter of Sgt. 1st Class Heath Robinson, holds a stuffed toy with an image of her dad, as her mother, Danielle Robinson, introduces President Joe Biden during a signing ceremony for the PACT Act of 2022, in Washington, August 10, 2022, photo by Kevin Lamarque/Reuters

Brielle Robinson, the daughter of Sgt. 1st Class Heath Robinson, holds a stuffed toy with an image of her dad, as her mother, Danielle Robinson, introduces President Joe Biden during a signing ceremony for the PACT Act of 2022, in Washington, August 10, 2022

Photo by Kevin Lamarque/Reuters

Similar advocacy took place on the road to passing the PACT Act, with veterans, their families, representatives from veteran-serving organizations, and even Stewart returning to Capitol Hill, sharing stories of the U.S. military's ongoing knowledge of the health risks of toxic burn pits with the House and Senate veterans' affairs committees and other members of Congress. One story that put a face to the push for benefits was that of Ohio native Sergeant First Class Heath Robinson, who was diagnosed with lung cancer years after exposure to airborne toxins from burn pits while deployed to Iraq and passed away at the age of 39 (Gordon, 2020). Like Zadroga, Robinson continued on active duty after becoming ill—in his case, discouraged by his command to avoid the benefit reduction that came with early medical retirement. His family, including his young daughter, walked the halls of Capitol Hill and pushed for the legislation that would ultimately take his name.

The PACT Act passed after several pieces of similar legislation had been introduced and stalled during previous Congresses, partially from political gridlock but also because VA asked for more time to review and improve its internal processes before Congress mandated reforms (Wentling, 2021).

These victories were long sought by victims, their families, and their advocates. Policymaking can be a slow-moving process, so it is important for VA to look to the future and ensure that its approach to implementing the provisions of the PACT Act is sustainable as research identifies emerging military hazards and their health consequences. For example, although it is highly comprehensive in addressing veterans' needs, the PACT Act does not include strategies for the meaningful involvement of veterans and other relevant stakeholders in research decisions. Given the potentially contentious nature of future decisions about health care coverage or treatments, the integral role that research will play in making such decisions, and the reality that effective translation of research to care depends on population uptake and use, VA could explore incorporating processes and structures like those in the Zadroga Act to meaningfully integrate stakeholder input into its decisionmaking process.

Prior RAND research on the World Trade Center Health Program (WTCHP) and other communities affected by toxic exposures has shown that stakeholder buy-in and support are critical for reducing community distrust and translating research into effective treatments and interventions (see Concannon et al., 2021). As we discuss next, the scientific decisionmaking and eligibility claims processes under the PACT Act are complex. To ensure that beneficiaries trust the outcomes of these processes, there should be a place at the table—in some capacity—for veterans, their families, and their advocates.

Both the Zadroga and PACT Acts require processes to identify specific health conditions presumed to be related to exposure to toxic hazards; they also provide direction on monitoring and providing treatment to those exposed. The Zadroga Act identified conditions associated with the destruction of the World Trade Center buildings, while the PACT Act covers a much broader range of exposures over a longer period. Nonetheless, the populations that the laws target have confronted the same scientific uncertainties about causal mechanisms and the progression of resulting medical conditions over time. Proving links between an exposure and an adverse health effect is scientifically challenging. Toxic exposure science is evolving, but it is still difficult for researchers to distinguish the interactions of numerous chemical, physical, and societal factors. Health effects can vary with the nature of the hazard, the exposure dose and route (e.g., inhalation, ingestion, dermal), individual susceptibilities (e.g., age, health status), and the presence of mitigating factors (e.g., use of personal protective equipment, distance from the source). To further complicate matters, scientific data on toxins and the circumstances of an exposure are often scant or nonexistent. A 2010 National Research Council report outlined the limitations of existing approaches to assessing the health risks of environmental hazards, arguing for policies that support technology-driven studies and ongoing monitoring of exposed populations (National Research Council, 2010).

The PACT Act and the Zadroga Act therefore both take on the difficult task of implementing a fair and balanced approach to decisionmaking that recognizes the possibility of associations between service-related exposures and health outcomes even when scientific evidence has not definitively made that connection. The two laws share many general elements, including the use of a presumption decision framework to inform benefit eligibility decisions, a focus on research and a weight-of-evidence approach to identifying presumptive medical conditions, oversight by expert panels or committees, and some level of involvement by stakeholders in decision processes. Where they differ, however, is in the Zadroga Act's wider research mandate to improve the understanding, diagnosis, and treatment of exposure-related medical conditions. There are still questions about whether VA has developed a presumption decision process that is suitable for supporting decisions about whether to further expand the list of covered conditions for both current and future veteran populations. The PACT Act called for a National Academies of Sciences, Engineering, and Medicine committee to assess whether VA's presumption decision process was scientifically sound, fair, and consistent. The committee critiqued the scientific rigor and adequacy of VA's approach to determining the strength of causal relationships between exposures and medical conditions and offered many recommendations (National Academies, 2023).

Our work with the WTCHP can provide VA with some guidance on how to implement scientific review processes that are transparent and timely to help with decisionmaking and stakeholder communication. The WTCHP includes an advisory committee that determines eligibility for the program, develops treatment guidelines, informs the program's research agenda, and determines whether a condition should be covered. The decision process under the PACT Act is similar, but the National Academies' report highlighted concerns about the transparency and rigor of VA's process (National Academies, 2023). Some of its recommendations could be implemented using the WTCHP as a model.

VA uses a multistep process to add a medical condition, geographic location, or period of service to its presumption list unless it is mandated by Congress. First, the Health Outcomes Military Exposures division of VA's Office of Patient Care Services reviews data, research studies, and input from policymakers and the public, including veterans. It then sends an initial list of conditions, locations, or service periods for review by two working groups and publishes the information in the Federal Register. The first working group evaluates the strength of the scientific evidence linking the circumstances of military exposures to the medical conditions in question, issues recommendations, and proposes a plan for prioritizing the conditions. The second working group endorses, disputes, or reprioritizes the list before sending it to an executive review board composed of VA and other federal officials. That panel then shares its recommendations with the VA Secretary. Before the presumptive conditions, locations, or service periods are adopted, both working groups and the executive review board document their findings, identify points of agreement and disagreement, and issue final recommendations.

The National Academies' report critiqued the lack of detail that VA provides on the methods and justifications used in its presumption decisionmaking process. Specifically, it is unclear whether the working groups have the necessary expertise to rigorously evaluate the scientific evidence on the range of conditions they are asked to consider. The authors also called out VA for not publicly releasing the criteria used in these various evaluations, recommending that VA document its processes and have them reviewed "to assess whether [they are] scientifically based, fair, consistent, transparent, timely, and veteran-centric" (National Academies, 2023, p. 7). It is important to note that the National Academies' study was based on predecisional documentation of VA's presumption decision process. However, with veterans' eligibility for medical treatment and disability benefits hinging on the outcomes of this process, it is critical for VA to communicate its decisionmaking rationale in a way that is accessible to veterans and their families—something that had not yet occurred more than a year and a half after the PACT Act was signed.

Administrative Complexities May Delay Veterans' Benefits and Underscore the Need for Greater Decisionmaking Efficiency

VA's PACT Act Performance Dashboard provides data on claims submitted, reviewed, and approved and on the demographics of veterans who have filed claims, been screened, and received medical treatment (VA, undated-b). However, VA has not yet released data on the health trajectories or care received by these veterans.

Figure 1 shows the cumulative share of PACT Act claims that VA had approved between the law's implementation and mid-February 2024. It is important to note that this approval rate applies only to claims that VA has reviewed, not all the claims that have been submitted. The second panel of the figure shows that the average veteran who submits a claim under the PACT Act can expect to wait more than five months for VA to review it, compared with around four months for a veteran who files another type of disability claim. Given the rapid progression of some cancers and other diseases common among PACT Act claimants, claim approval delays could inhibit access to needed care. Figure 2 shows the most common types of claims submitted to VA as of mid-February 2024 and the share of those claims that were approved.

Figure 1. PACT Act Claim Approval Rates and VA Review Times

Share of reviewed PACT Act claims approved by VA

PACT Act claims approved: 75.2%

Not approved: 24.8%

Average number of days to review claims, PACT Act versus non–PACT Act

PACT Act: 161.0 days

Non–PACT Act: 127.1 days

SOURCE: VA, 2024.

Figure 2. Most Common Claims and Approval Rates Under the PACT Act

Condition Claims approved Claims denied
Hypertensive vascular disease 200,403 70,412
Allergic rhinitis 143,847 35,962
Maxillary sinusitis 46,670 41,386
Bronchial asthma 39,803 43,119
Chronic bronchitis 10,828 36,249

SOURCE: VA, 2024.

It is possible that the conditions that appear most frequently in PACT Act claims will shift as VA continues to review submitted claims, as more veterans are screened and monitored over time, and as new environmental hazards are identified and evaluated. VA also has an ongoing outreach campaign to educate veterans who are not otherwise eligible for VA care or who might believe that their health conditions are not covered. The campaign has included regular in-person events across the United States (see VA, undated-a). The PACT Act Performance Dashboard (VA, undated-b) provides statistics on engagement with PACT Act–related resources, including webpage views and inquiries fielded by VA call centers. However, given the available data, it is difficult to determine whether these communication efforts have been effective, whether delays in claim approvals have affected the care that veterans receive, or whether there are differences in health outcomes between veterans whose claims are approved and those whose claims are rejected.

Directions for Future Research

Since 2017, RAND researchers have worked with the WTCHP to help maximize the impact of the program's toxic exposure research on behalf of 9/11 responders and survivors. VA and the WTCHP face similar challenges in responding to the health care needs of their respective beneficiaries and weighing the evidence of causality between toxic exposures and medical conditions. Two elements of the WTCHP stand out as critical to achieving that program's aims: (1) an emphasis on research to support multiple objectives and (2) prioritization of stakeholder engagement and communication. The following suggestions for future research draw on lessons learned from our work with the WTCHP and encompass evidence assessment, research planning, and stakeholder engagement, all of which have implications for VA as it implements the PACT Act's provisions.

Actively Contribute to the Research Base to Improve Public Awareness and Facilitate Scientific Collaboration

RAND has been helping the WTCHP conduct ongoing reviews of studies on toxic exposures and adverse effects associated with the World Trade Center attacks. To launch this initiative, we gathered data from nearly 1,000 peer-reviewed publications dating back to September 2001, developed an electronic abstraction form, and extracted data into various categories using descriptive taxonomies (Concannon et al., 2021). With relevant studies systematically reviewed and cataloged, we are working with the program to implement a quarterly review process. To keep the public and the scientific community apprised of the latest findings, the WTCHP makes this research available through a searchable online dashboard (World Trade Center Health Program, 2023).

VA's current research hub on military exposures provides general information and links to sources where visitors can access studies, such as the National Institutes of Health database PubMed, but its primary focus is to inform veterans about VA policies and programs and to connect them with VA services (VA, 2023e). While funding streams could limit comprehensive reviews and research, VA could take a phased approach to building the infrastructure and procedures for continual evidence reviews. It may be limited in the extent to which it can adopt the WTCHP's systematic review process, but it could still borrow some practices from that program, such as working with an independent entity to continually review the scientific literature and latest research. VA already has experience establishing a similar public-facing research hub: the VA Innovation and Research Review System's COVID-19 Research Dashboard (VA, undated-c).

To further expand the research base, VA could also consider working with the U.S. Department of Defense's Toxic Exposure Research Program to conduct regular reviews of the research that this program funds, similar to how the WTCHP tracks and disseminates its own funded research (see Congressionally Directed Medical Research Programs, 2023). The PACT Act established a mechanism to facilitate this kind of research collaboration: The Toxic Exposure Research Working Group is charged with identifying relevant research and collaborative opportunities across the U.S. government (VA, 2023a). However, the working group is slated to terminate after five years of research activity, which raises questions about how VA will consistently document future research on toxic exposures and health conditions related to military service. The working group's strategic plan includes providing direction for military exposure research beyond its term; however, veterans would likely benefit from keeping the working group active as currently unknown or understudied military environmental risks and health consequences come to light. The working group could even be expanded to assess the larger body of military toxic exposure research; these reviews could inform VA's annual progress reporting and provide the necessary data to evaluate its research priorities and resource allocations.

Despite the working group's five-year mandate, it could lay the groundwork for a more systematic and comprehensive approach to documenting and sharing relevant studies (including studies in progress). This would give policymakers, veterans, and the scientific community a more complete picture of the research on military exposures, and it would facilitate data extraction for related research. As machine learning algorithms and text-mining tools improve, VA can leverage them to identify and summarize relevant studies, organize the vast literature on military exposures, and answer targeted research questions more efficiently.

Strengthen the Scientific Rigor, Increase Transparency, and Enhance Stakeholder Engagement in the Decisionmaking Process

Developing lists of presumptive conditions, locations, and periods of service eliminates the burden of proof for veterans, streamlining the benefit application process and potentially expediting approvals. VA's presumption decisionmaking process had already expanded the number of veterans who were eligible for benefits from exposure to environmental hazards, but Congress mandated an even greater expansion under the PACT Act. However, there are still questions about the rigor and transparency of that process. Getting it right is essential to providing timely health care and other support to both current and future veterans. As the National Academies pointed out, VA has not yet clarified how it takes scientific evidence into account in its presumption decisionmaking, nor has it shown that it does so in a way that is both systematic and informed by condition-specific expertise.

With the understanding that VA's decisionmaking process is still quite new, we echo the National Academies' recommendation to ensure that the process is scientifically rigorous and that the rationale for decisions is shared with the public. A potential starting point would be for VA to clarify the expertise of the working group members who review and prioritize presumptive conditions, locations, and service periods. It would further benefit from enlisting an independent third party to evaluate this process and advise on improvements going forward. There are also opportunities to better integrate stakeholders into the governance structure for the presumption decision process.

In the health and health care literature, stakeholder engagement is defined as the meaningful involvement of invested parties. In the case of the PACT Act, these invested parties include veterans, caregivers, clinicians, and advocates. Stakeholder engagement builds trust, reduces conflicts of interest, and helps ensure that decisions are relevant. Although VA does collect input from stakeholders when it generates an initial list of presumptive conditions (or geographic locations and periods of service), the primary means for doing so, according to its planning documents, is the Federal Register (National Academies, 2023). It is possible that VA is accepting public comments in other ways, but engagement through the Federal Register commenting system has been lackluster. For example, VA's interim final rule to establish a service connection for nine types of respiratory cancer garnered only nine public comments (VA, 2022b).

The Zadroga Act explicitly mandated stakeholder involvement in WTCHP governance, including representation on the Scientific/Technical Advisory Committee and two steering committees—one for 9/11 responders and one for survivors (Pub. L. 111-347, 2011, §3302). The Scientific/Technical Advisory Committee reviews scientific and medical evidence and issues recommendations, while the steering committees were charged with engagement and outreach to facilitate health evaluations, monitoring, and treatment. This approach to integrating stakeholders could enhance the perceived legitimacy of decisionmaking under the PACT Act and ensure that decisionmakers are accounting for both the research evidence and veterans' experiences as they issue presumption recommendations.

Build Trust in the Research and Decisionmaking Processes Through Stakeholder Outreach

Despite VA's efforts to raise awareness about veterans' eligibility for benefits under the PACT Act, it is still concerned that veterans who do not receive care from VA will not know that they are eligible for treatment and benefits. The PACT Act Performance Dashboard tracks data on engagement with its PACT Act resources (VA, undated-b). Online and phone-based resources, combined with regular events (VA, undated-a), will help VA reach as many eligible veterans as possible to offer screenings, ongoing monitoring, and prompt treatment. However, there is also a need for outreach specifically to foster trust among veterans and their advocates and ensure that their concerns are heard.

In our work with the WTCHP, we found that stakeholder engagement was critical in aligning expectations about research, improving the impact of research, and ensuring that stakeholders broadly understood and accepted research findings (Concannon et al., 2021). The program has involved stakeholders in formal and ad hoc advisory bodies, public meetings, and special sessions and workshops on selected topics of interest. Without adequate engagement, stakeholders can be overly optimistic about what research can and should achieve, as well as what a program could do if it had better evidence.

For example, RAND researchers carried out a series of focus groups with World Trade Center responders and survivors to solicit input on research priorities and their experiences with particular medical conditions. A key finding from these discussions was that there was a gap between participants' medical concerns and the research available as a basis for decisionmaking about claims and coverage. These conversations opened two paths forward: They identified health conditions that were relevant to stakeholders and had an established evidence base, and they highlighted priority conditions for future research funding.

The PACT Act was a seminal legislative advancement supporting the welfare of service members and veterans affected by toxic military exposures. It is understandable that there will be challenges in meeting the PACT Act's mandates, given the size of the populations affected and the scientific complexity of establishing links between military exposures and subsequent health conditions. However, going forward, VA has an opportunity to learn from prior initiatives, like the WTCHP, that have been contributing to the evidence base, fostering scientific collaboration, and engaging stakeholders in decisionmaking, prioritizing, and navigating the difficult trade-offs inherent in any program that relies on eligibility determinations. Finally, the dynamic nature of warfare and military deployments underscores the importance of being prepared for currently unknown hazards that could have consequences for current and future generations of U.S. veterans. The PACT Act gives VA an opportunity to lay the groundwork to address these challenges now.

References

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