March 29, 2022 - TAPS Statement for the Record

Before the Committee On Veterans' Affairs United States Senate; Honoring Our Promise to Address Comprehensive Toxics Act of 2021

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The Tragedy Assistance Program for Survivors (TAPS) is the national provider of comfort, care, and resources to all those grieving the death of a military loved one. TAPS was founded in 1994 as a 501(c)(3) nonprofit organization to provide 24/7 care to all military survivors, regardless of a service member’s duty status at the time of death, a survivors’ relationship to the deceased service member, or the circumstances of a service member’s death.

TAPS provides comprehensive support through services and programs that include peer-based emotional support, casework, assistance with education benefits, and community-based grief and trauma resources, all at no cost to military survivors. TAPS offers additional programs including, but not limited to: a 24/7 National Military Survivor Helpline; national, regional, and community programs to facilitate a healthy grief journey for survivors of all ages; and information and resources provided through the TAPS Institute for Hope and Healing. TAPS extends a significant service to military survivors by facilitating meaningful connections to other survivors with shared loss experiences.

In 1994, Bonnie Carroll founded TAPS after the 1992 death of her husband Brigadier General Tom Carroll, who was killed along with seven other soldiers when their Army National Guard plane crashed in the mountains of Alaska. Since its founding, TAPS has provided care and support to more than 100,000 bereaved military survivors.

As the leading nonprofit organization offering military grief support, TAPS builds a community of survivors helping survivors heal. TAPS provides connections to a network of peer-based emotional support and critical casework assistance, empowering survivors to grow with their grief. This is why in 2021 alone, 9,246 newly bereaved military survivors came to TAPS for care. This is an average of 25 new survivors coming to TAPS each and every day. Of the survivors seeking our care, 31% were grieving the death of a loved one to illness and 27% were grieving the death of a military loved one to suicide.

Chairman Tester and Ranking Member Moran, and distinguished members of the Senate Committee on Veterans’ Affairs, the Tragedy Assistance Program for Survivors (TAPS) appreciates the opportunity to provide a statement for the record on issues and concerns of importance to the 100,000 plus family members of all ages, representing all services with losses from all causes that we have been honored to serve. Every survivor in our nation benefits from the critical work of this committee and we thank you.

The mission of TAPS is to provide comfort, care, and resources for all those grieving the death of a military loved one regardless of the manner of death, the duty status at the time of death, the survivor’s relationship to the deceased, or the survivor’s phase in their grief journey. Part of that commitment includes advocating for improvements in programs and services provided by the U.S. federal government, Department of Defense (DOD), Department of Veterans Affairs (VA), Department of Education (DoED), Department of Labor (DOL), and Department of Health and Human Services (HHS), and state and local governments.

TAPS and the VA have mutually benefited from a long-standing, collaborative working relationship. In 2019, TAPS and the VA entered into a new and expanded Memorandum of Agreement that formalized their partnership with the goal to provide earlier and expedited access to needed survivor services. TAPS works with military survivors to identify, refer, and apply for resources available within the VA including education, burial, benefits and entitlements, grief counseling, and survivor assistance.

TAPS also works collaboratively with the VA and DOD Survivors Forum, which serves as a clearinghouse for information on government and private sector programs and policies affecting surviving families. Through its quarterly meetings, TAPS shares information on, and supports referrals to, its programs and services that support all those grieving the death of a military loved one.

TAPS President and Founder, Bonnie Carroll serves on the Secretary of Defense Roundtable for Military Service Organizations and the Department of Veterans Affairs Federal Advisory Committee on Veterans’ Families, Caregivers, and Survivors where she chairs the Subcommittee on Survivors. The Committee advises the Secretary of the VA on matters related to Veterans’ families, caregivers, and survivors across all generations, relationships, and veteran statuses. Ms. Carroll also serves as a PREVENTS Ambassador for the VA’s suicide prevention initiative. 

 

Pass Landmark Toxic Exposure Legislation

As the leading voice for the families of those who died as a result of illnesses connected to toxic exposure and a founding member of the Toxic Exposure in the American Military (TEAM) Coalition, TAPS worked with Members of Congress to introduce legislation during the 117th Congress, which collectively address the devastating effects of toxic exposure on our veterans, their families, caregivers, and survivors.

TAPS is grateful to the Chairmen and Ranking Members of the Senate and House Committees on Veterans’ Affairs for crafting comprehensive Toxic Exposure legislation, which incorporate key aspects of these important bills. TAPS was honored to testify in support of the Comprehensive and Overdue Support for Troops (COST) of War Act (S.3003) and the Honoring Our Promise to Address Comprehensive Toxics (PACT) Act (H.R.3967), and to share our recommendations with Congress, the Department of Veterans’ Affairs, the Department of Defense, and the White House. 

We are extremely gratified by President Biden’s remarks during the State of the Union Address on March 1, 2022, stating, “I am calling on Congress to pass the law to make sure veterans devastated by Toxic Exposure in Iraq and Afghanistan finally get the benefits and the comprehensive health care they deserve”.

TAPS appreciates the President’s remarks and urges the Senate to swiftly pass the Honoring Our PACT Act (H.R.3967). Our veterans exposed to toxins and their families do not have time to wait. Every day counts!

This comprehensive legislation passed the House of Representatives on March 3, 2022, with a bipartisan vote of 256-174 and is supported by 42 veteran service organizations, to include TAPS. This landmark bill will ensure over 3.5 million veterans exposed to toxins and airborne hazards get immediate, lifelong access to VA health care.

The Honoring our PACT Act will also ensure the following:

• Provide extension of combat eligibility for health care from 5 to 10 years with a one-year open enrollment period for those veterans who missed their window;
• Streamline VA’s review process for establishing toxic exposure presumptions;
• Concede exposure to airborne hazards and burn pits based on locations and dates of service;
• Require medical exams and opinions for certain veterans with toxic exposure disability claims;
• Add hypertension and Monoclonal Gammopathy of Undetermined Significance to the list of presumptions for Agent Orange exposure;
• Establish a presumption of service connection for 23 respiratory illnesses and cancers related to burn pits and airborne hazards exposure;
• Create a presumption of exposure to radiation for veterans who participated in cleanup activities in Palomares, Spain, and Enewetak Atoll;
• Allow for a new tort claim for veterans and families exposed to toxic water at Camp Lejeune;
• Expand agent orange exposure to veterans who served in Thailand, Laos, and Cambodia;
• Improve data collection between VA and the Department of Defense;
• Commission studies related to incidents of cancer among veterans, health trends of Post 9/11 veterans and feasibility of providing healthcare to dependents of veterans;
• Require VA to provide standardized training to improve toxic exposure disability claims adjudications;
• Require VA to conduct outreach and provide resources to toxic exposed veterans.

TAPS appreciates that the Honoring Our PACT Act will provide health care and benefits to veterans of all generations exposed to toxins and airborne hazards as a result of their military service. We are also grateful the bill streamlines VA’s review process for establishing toxic exposure presumptions, reduces the burden of proof for toxic exposure service-connection, standardizes training to improve disability claims adjudications, and strengthens VA’s outreach to impacted veterans.

TAPS is especially gratified that the legislation includes an extension of combat eligibility for veterans to access health care from 5 to 10 years with a one-year open enrollment period. We have long championed this critical improvement in health care eligibility for veterans, since many rare cancers are not diagnosed until eight to ten years after military service. Allowing veterans who missed the window of opportunity to enroll within a one-year open enrollment period, is critical for these veterans and their families and may help extend and save lives.

 

Understanding Illnesses That May Result from Toxic Exposure

According to the VA, a significant number of veterans who served after 9/11 were exposed to more than a dozen different wide-ranging environmental and chemical hazards, most of which cause serious health risks. Whether from open burn pits, depleted uranium, toxic fragments, or particulate matter, service members and veterans are getting sick and prematurely dying from uncommon illnesses and diseases that are tied to exposures to toxins.

Since 2008, over 16,500 survivors whose military loved ones died due to an illness have contacted TAPS. As mentioned, in 2021 alone, 9,246 newly bereaved military survivors came to TAPS for care, and 31% were grieving the death of a loved one to illness, surpassing all other circumstances of death, including hostile action. Sadly, we project this number to increase by more than 3,000 each year based on current trends.

As a result of these increasing losses and the challenges they pose for grieving loved ones, many who have often cared for their service member or veteran without recognition or governmental support for years before their death, TAPS is committed to promoting a better shared understanding of the illnesses that may result from exposures to toxins. Our desire is to ensure surviving families have access to all available benefits earned through the service of their loved one. The information gathered from our survivor histories is also invaluable in establishing patterns and baselines that can be applied to the veteran community, save lives, and prevent this now and in the future.

TAPS annually conducts Illness Loss Survivor Surveys to understand the issues faced by service members and veterans who have passed away post-deployment. TAPS conducted an Illness Loss Survivor Survey in 2020, which was included in our 2020 Impact Report. From the survey data we learned:

• Of the 505 respondents, 57% of service members were diagnosed with a form of cancer prior to passing away, with rates nearly equivalent for those that served pre-9/11 and post-9/11.
• Among the respondents who indicated their loved one served post-9/11, 60% of these service members required a caregiver prior to their death.
• Among the respondents who indicated their loved one served post-9/11, 41% indicated that a loved one’s illness had been initially misdiagnosed.

The data from the TAPS Illness Loss Survivor Survey in 2021 shows these trends are holding and that there continues to be reports of the misdiagnosis of cancers for service members and veterans dying of cancer, and there remains a need for caregiver support.

 

Caregiver Survivors and Their Children Need Support

The VA supports thousands of veteran caregivers each year in numerous ways through its Caregiver Support Programs. Regretfully, each year many of these caregivers become caregiver survivors on the death of their loved one. In loss, they must not only face their own grief but must often continue to care for other family members including the children and youth who were also left behind. The impact of cumulative caring and grief can be overwhelming for adults and also for the youngest survivors who have experienced the presence of illness and even contributed to caring as our nation's Hidden Helpers. Without help navigating the maze of care and benefits they are entitled to and connections to timely and age-appropriate bereavement support, the impact of the veteran's loss on all survivors can be debilitating, and developmentally impact them for the rest of their lives. These caregiver survivors need to have access to legal and financial assistance, mental health counseling, and grief and bereavement support for themselves and their children before and after their loved one dies.

Through our annual Illness Loss Survivor Survey, and extensive outreach and engagement with caregiver survivors of all ages, TAPS has gained the following valuable insights:

• Early Diagnosis Saves Lives

  There is an urgency of early diagnosis and intervention which saves and prolongs the lives of service members and veterans, beloved by family and friends who consider each day together as precious and irreplaceable.

• Loss and Anticipatory Grief Begin Before A Diagnosis

  The losses experienced by caregiver survivors of death by toxic exposure illness begin before a diagnosis with changes in abilities, expectations, roles, and the introduction of anxiety and fear. Anticipatory and ambiguous grief are also experienced by the service member or veteran and by their caregivers – parents, spouse, children and youth of all ages – as soon as a sense of unwellness is experienced and the dread of "what if" begins.

• Children and Youth Are Significantly Impacted by Illness Loss
  
  The lasting impact of illness loss of a parent or other adult on children and youth has been documented to be a significant and long lasting adverse childhood experience.
  

 

Illness Loss Survivor Testimonials

The information that TAPS has gathered from our survivor histories is invaluable in establishing patterns and baselines that can inform the policy and programmatic considerations of the DOD, VA and Congress as they seek to address ways to prevent these exposures, address health care needs of military members and veterans, support their caregivers, and ensure that their survivors are fully covered with the care, benefits, resources and services they need after loss and in their future.

TAPS has shared many personal testimonials of survivors whose loved ones have died as a result of their exposure to toxins, open burn pits, and airborne hazards while deployed. Sadly, many service members and veterans were misdiagnosed. Though each survivor's story is different, the underlying thread is the desire to share their loved ones’ story to help save lives now and in the future. Here are just some of the many stories impacted survivors have shared with us:

• Coleen Bowman, Surviving Spouse of SGM Robert Bowman

  "Rob was the picture of health before he deployed, he was an Airborne Ranger. When he returned from his second deployment from Iraq, he was sick. In June 2011, Rob was diagnosed with an extremely rare cancer Cholangiocarcinoma (bile duct cancer). During deployments, Rob was in close proximity to an open-air burn pit that burned around the clock. His vehicle was struck at least ten times by IEDs, stirring up particulate matter.

  Had we known he had been exposed and to what toxins, we could have shared the information with doctors, and it wouldn’t have taken six months of misdiagnoses before we learned he had stage 4 inoperable cancer. Had we known earlier, he might still be alive today. For 19 months my daughters and I cared for him, and on January 13, 2013, Rob passed away at the age of 44. Several of the men that Rob served with have many different illnesses, to include cancer, and several have passed away at very young ages." 

• Laura Forshey, Surviving Spouse of SGT Curtis Forshey
  

  "Three months into his deployment, he began to experience bloody noses that would go on for hours at a time. He went to the doctor there on the FOB where they ran bloodwork. The results showed his white blood count was way off. They flew him to Landstuhl, Germany. His wife, Laura, and 3-month-old son, Ben, along with Curt’s parents flew to be with him in Germany. While they were in flight, Curt passed away.

  His cause of death was a brain aneurysm, caused from the cancer they discovered, Acute Promyelocytic Leukemia. Curt was 22 years old. He died on March 27, 2007. With proper diagnosis and treatment it is curable in 80-90% of patients."

• June Heston, Surviving Spouse of BG Michael Heston
  
  “Mike was active duty in the Vermont National Guard. He deployed to Afghanistan three times. First in 2003 for 7 months, then 2006-2008 for 15 months, and last 2011-2012 for one year. In April of 2016, Mike had gone into the doctor not feeling well. For 10 months doctors couldn't figure out what was wrong with him. Finally, in January of 2017, Mike was diagnosed with a very rare form of pancreatic cancer, stage 4. Mike passed away shortly after that on November 14, 2018."

• Tim Merkh, Father of Corpsman Richard Merkh
  

  “My son Richard Merkh was a Corpsman in the Navy. He had served over 15 years and died from cancer on October 3, 2018. Richard served several tours with the Marines during the war. His lodging facilities were on only trash or dump sites. It is my belief that Richard contracted stage 4 cancer from his exposure during the war. Unfortunately, he was diagnosed after his entire liver and colon was infected with cancer.

  I am a retired USAF veteran. I know what we put our troops through. Some things must change. Richard was survived by his wife of twelve years and a beautiful 4-year-old daughter, my precious granddaughter. We can’t change Richard’s outcome, but we must ensure we treat and support our troops better.”

 

Conclusion

Exposures to deadly toxins and airborne hazards as a result of military service is not a new phenomenon. Unfortunately, generations of service members have been exposed to environmental toxins while deployed and died as a result of their exposure.

TAPS is grateful that the Honoring Our PACT Act addresses issues affecting veterans across generations, who have served in defense of our country. As a nation, we must do more to prevent environmental exposures, properly treat illnesses, and provide earned health care and benefits to impacted veterans and their survivors. It is our sacred obligation.

TAPS thanks Chairman Tester, Ranking Member Moran, and committee members for holding this hearing to review the Honoring Our Promise to Address Comprehensive Toxics Act. Our veterans who volunteer their lives to protect the freedom of our nation, and the families who stand beside them, must know that America’s priority is to protect and provide for all those who are ready to make the ultimate sacrifice.

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If you have any further questions, please email policy@taps.org or call 800-959-8277 (TAPS).