Battling for Benefits: Military Veterans With Cancer Fight for Government-Funded Health Care

Military service is an inherently dangerous occupation, especially for service members who find themselves on the front lines of a conflict. Those who sign up to place themselves in harm’s way are well aware of the risk, but they expect it to come from the enemy. In some wars, however, other factors can cause disabilities long after a soldier has returned home.

During the war in Vietnam, the Department of Defense began a program called Operation Ranch Hand to deprive North Vietnamese and Viet Cong soldiers of cover in the dense tropical overgrowth. From 1962 until 1971, Air Force planes sprayed some 19 million gallons of herbicide on the jungles of Southeast Asia, including about 11 million gallons of a toxic cocktail known as Agent Orange.

Used in concentrations 27 times higher than in typical weedkilling applications, the poison had its intended effect, defoliating thousands of acres, but it also exposed thousands of service members. Whether or not the military understood the risk to its personnel is a matter of debate, but there is some evidence that Air Force officials knew of the danger as early as 1967. Shortly after returning from the war, some veterans began to report symptoms such as rashes, numbness and nausea. Others had children with rare birth defects, while still others developed cancer. Some veterans suspected Agent Orange was the cause, and began a long fight to prove it.

In the meantime, those affected, and others facing service-related illnesses in the years since, began a long relationship with doctors and, in many cases, the Veterans Health Administration — a dynamic that has brought them both support and challenges.

A NOXIOUS BREW

Peter Sills, author of "Toxic War: The Story of Agent Orange," explains that it wasn’t the herbicides in the mix that were deadly, it was the dioxin that was inadvertently created in the manufacturing process. “Every time you create a chemical process with chlorine and a carbon-based compound, you wind up with some kind of dioxin,” he says. “And the process of making Agent Orange resulted in the most toxic form, known as 2,3,7,8-TCDD.”

Among the deadliest chemicals known to science, dioxins can cause health problems at very low doses, and are fat-soluble, so they accumulate in human tissue over time. “When sprayed from aircraft as it was in Vietnam, it gets atomized into tiny droplets that can spread for miles,” says Sills. “It’s been known to travel 25 or 30 miles, and you’d never know you’d been exposed.”

Karl Pritchard was serving in a Navy electronic countermeasures squadron at Tan Son Nhut Air Base in 1962, interdicting Chinese aircraft attempting to bring supplies to the North Vietnamese. “We were living in tents at the end of the runway, waiting for the call to scramble,” he remembers. Unknown to him, Operation Ranch Hand had begun at the base in January and was now in full swing. “Nobody told us what they were using or where they were using it,” says Pritchard.

In late 2013 he began having back pain and blood in his urine, which his doctor attributed to kidney stones. A CT scan disproved that diagnosis; instead, he learned he had aggressive bladder cancer.

Some of the several million men and women who served in Middle East conflicts are experiencing their own cancer challenges. Instead of Agent Orange, many believe it’s due to their exposure to war-specific environmental hazards during their tours of duty. Thomas Berger, executive director of The Veterans Health Council, a nonprofit aimed at educating veterans about health issues and care, says that “those who were downwind when we blew up Saddam’s ammo stores, which contained sarin gas and other nasty stuff,” are at particular risk of developing health problems. Burn pits and depleted uranium ammunition were additional disease vectors for these American soldiers, he says.

Tim Smith was stationed at Forward Operating Base (FOB) St. Michael near Al Mahmudiyah in 2004, where open burn pits were kept going around the clock. “Anything from plastic to dead animals to unexploded IEDs went in there,” he remembers. “We were all breathing the smoke from that stuff 24/7.” None of the soldiers were issued respirators, he says, and they weren’t warned that breathing the smoke might be hazardous. “At the time, we were just trying to stay alive,” says Smith. “We weren’t really thinking about long-term consequences.”

Upon his return to the U.S., Smith started a cleaning business and began hiring veterans. At the beginning of 2016 he developed a dry cough, and a CT scan revealed a nodule on his right lung that turned out to be malignant. A biopsy during surgery showed the cancer had spread to his lymph nodes, requiring a regimen of chemotherapy. The diagnosis was both a shock and a puzzle, since Smith had never smoked and was an athlete in college.

Then he remembered the burn pits.

COVERAGE FOR VETERANS

Pritchard responded to his cancer diagnosis by following doctors’ recommendations that he have his bladder removed, but a subsequent scan showed the cancer had metastasized, and doctors told him there was little they could do that would be effective. “So I went home and started waiting to die,” he says. But after hearing of a clinical trial of the immunotherapy drug Tecentriq (atezolizumab), Pritchard enrolled and began receiving treatment. “About eight months after I started, they couldn’t find cancer in me anywhere,” he says. “That’s been the case for about a year now.”

Pritchard didn’t consider a Veterans Administration hospital for his treatment, though, because of an earlier unsatisfactory experience, combined with the long wait times veterans often encounter. “I’ve lost faith in them because of all the problems they have,” he says. “I heard some guys were waiting up to two years to get an appointment.”

Medicare and a military health insurance program, Tricare for Life, have covered most of his expenses, Pritchard notes.

Tricare, which largely pays for private health care, is not connected to the VA, but is part of a separate health care system meant for active-duty soldiers or those who served for 20 years or more and then retired. That military system is free for active-duty soldiers, but retirees must pay enrollment fees and co-payments.

The government-owned and -run VA, on the other hand — which includes about 1,700 hospitals and other facilities that treat 9 million vets a year — is designed to be the first stop for sick former soldiers who served for at least two years, especially those who have medically intensive conditions such as cancer. Under the system, care and medications for service-related illnesses — including cancer drugs — are provided at no charge or with a co-pay, depending on eligibility.

Participating veterans must complete a financial assessment during enrollment to determine whether or not they must pay. Enrollees are assigned to one of eight priority groups based on their disability status, income and other factors, with the aim of balancing needs with resources and making sure the sickest vets get treatment first. Veterans with service-related disabilities are assigned to the highest levels.

This means that coverage may be insufficient for some veterans, or that some may not be permitted to enroll at all. In addition, their ability to get care that is funded by the VA but administered outside the system by private providers tends to be limited. If eligible for both programs, veterans are allowed to use both Tricare and the VA. Some, like Pritchard, end up relying on health coverage provided by neither the military nor the VA: About half of all vets have private health insurance, in some cases through their employers or unions. One in 10 veterans under the age of 65 is uninsured.

Veterans aged 65 years or older, however, are eligible for Medicare. In fact, even if they already have Tricare, the VA recommends that these veterans also enroll in Medicare in order to broaden and strengthen their overall coverage, according to the AARP. For some covered by Tricare, this dual enrollment may be required.

THE BATTLE FOR BENEFITS

While the VA’s primary function is to tend to the soldiers most badly injured during their time of service, it wasn’t there to support some soldiers after Vietnam. When many returning Vietnam veterans began to develop health problems after the war, the government refused to acknowledge that Agent Orange was to blame. Soldiers who had fought the Viet Cong in Southeast Asia now found themselves fighting the agency charged with their care. About half the American soldiers who served in Vietnam, 1.5 million, were present there during the U.S. military’s most liberal use of herbicides, according to the American Cancer Society.

In 1979, a veterans’ group filed a lawsuit against the manufacturers of Agent Orange, and in 1984, seven of those companies agreed to pay $180 million. Meanwhile, a 1981 U.S. government act directed the VA to provide medical care to soldiers exposed to Agent Orange during active duty, even without medical evidence of a connection, as long as there was no proof that something other than the herbicide had caused their illnesses. And in 1991, Congress passed the Agent Orange Act, directing the VA to presume that specific diseases could be tied to chemical exposure related to the service of these soldiers in Vietnam.

Why did it take so long to begin the process of compensating veterans for their illnesses? In a word, proof. Until laws started emerging to support their claims, the burden of proving that a health problem was service-related fell solely on the service member. Initially, the Department of Defense maintained that only the crews of the aircraft that sprayed it had been exposed to Agent Orange, and studies on the chemical’s effects at the time were inconclusive.

Since then, there has been much more research done on Vietnam and Gulf War health issues, both through human studies and in laboratories. According to the American Society of Clinical Oncology (ASCO), studies of Agent Orange have been hampered by the relatively small number of veterans who were exposed. Many of the human studies have produced mixed results, although laboratory research has more definitively indicated that exposure to dioxin can create tumors in mice and alter the genes that govern cell growth in human tissue.

In the 1990s, the Health and Medicine Division of the National Academies of Sciences, Engineering and Medicine began issuing a biyearly report on the association between Agent Orange exposure and various diseases. The cancer section of the report released in 2016, under the heading “Sufficient evidence of an association,” lists soft tissue sarcoma; non-Hodgkin lymphoma; Hodgkin disease; and chronic lymphocytic leukemia. Respiratory cancers, prostate cancers, bladder cancer and multiple myeloma appear under “Limited/ suggestive evidence of an association.”

On the cancers in the “limited/suggestive evidence” category, Michael Kelley, the VA’s national program director for oncology,says “The evidence summarized in the (National Academies) report is relatively low-level evidence, but the VA decided to give veterans the benefit of the doubt in that regard.”

There is insufficient evidence to link other conditions such as breast, kidney, skin or brain cancers to Agent Orange, the National Academies report says.

The VA-sponsored Post War Mortality from Neurological Disease in Gulf War Veterans study found a possible link, among the 620,000 who served in the Gulf War in 1990-1991, between four conditions — amyotrophic lateral sclerosis, multiple sclerosis, Parkinson’s disease and brain cancer — and “potentially hazardous environmental exposures during the war, such as oil well fire smoke, chemical and biological warfare agents, prophylactic agents against chemical and biological warfare, multiple vaccinations, depleted uranium, pesticides, and endemic infectious diseases.”

APPROVED, BUT NOT ACCESSIBLE

Unfortunately, another major complicating factor is access to care. A 2014 Gallup poll revealed that just over half of veterans who interacted with the VA reported difficulties in obtaining services. The same year, a scandal had broken at the Phoenix VA hospital when it was discovered that the facility was faking its wait-time reports in an attempt to cover up serious delays in care delivery. CNN reported that some 40 veterans died while awaiting services, and soon similar transgressions were uncovered at other VA hospitals. In the Gallup poll, taken after news of the delays was released, some 60 percent said they had lost confidence in the agency’s ability to deliver the care they needed.

In the wake of the scandal, VA Secretary Eric Shinseki resigned in May 2014 and was replaced by Robert McDonald. Then Congress quickly passed the Veterans Access, Choice and Accountability Act, which allows vets to obtain care at commercial health care institutions if a VA slot isn’t available. The act allowed veterans who lived more than 40 miles from a VA clinic or had waited — or were likely to wait — more than 30 days for treatment to seek help from privatesector providers. (The VA already had a Non-VA Medical Care Program in place, but only on a case-by-case basis.)

Rep. Jeff Miller (R-Florida) championed the Veterans Choice Act, but now says it has been a failure, citing long delays in reimbursement and even more veterans waiting for treatment than before. “The VA has a long history of mismanaging programs, and Choice is no different,” he says. “Its notorious lack of accountability is driving all of the department’s most pressing problems.”

Veterans who are experiencing problems with the system have few options, adds Jim Strickland of the independent veterans’ advocacy group VAWatchdog.org. “Each VA health facility has a patient advocate, but it’s a largely ineffective system,” he says, so the next step should be a complaint to the veteran’s senator or representative. If that doesn’t work, vets can turn to local reporters. “The VA will quickly fix a veteran’s problem if the local or hometown press gets involved,” says Strickland. “Veterans’ law attorneys are another option.”

Staffing shortages have also been a constant limiting factor at the VA; a 2015 USA Today article revealed that eight regional VA health care facilities were suffering vacancy rates of more than 30 percent for critical positions such as doctors and nurses.

CHANGING THE CULTURE

The latest bill to attempt a fix is the Veterans First Act, introduced by Sen. Richard Blumenthal (D-Connecticut) and Sen. Johnny Isakson (R-Georgia) in May 2016. The new omnibus would make it easier to fire or discipline bad actors, including senior executives, and expedite their removal. It would protect whistleblowers from retribution, expand support for caregivers, increase access to job training and stop the over-prescription of opioids, among other provisions.

“Veterans battling cancer need a flexible, responsive health care system, and they need to be able to see a doctor without excessive wait times,” says Blumenthal. “This bill will help the VA hire more people, arrange working hours to help doctors serve more people, and streamline administration while increasing patient outreach. Specifically, it will support research into the health effects faced by veterans and their descendants who were exposed to hazardous substances as a result of military service, including various forms of cancer.”

Already, there are signs of change. In an effort to get out ahead of the problem, the VA announced its MyVA program in April 2016. Steven Lieberman, a medical doctor and VA’s national lead for access, explains that “It’s a three-pronged approach to improve access to health care at all VA facilities, particularly for those with urgent needs such as cancer patients.” All VA facilities have committed to optimizing access and are implementing solutions of proven benefit to enhance access. The agency is expanding its use of telehealth, says Lieberman, and is hiring group practice managers who will focus on improving efficiencies within each clinic. “Finally, we’ve been sending out teams to VAs across the country from our Veterans Engineering Resource Center to help re-engineer the way the clinics are run.”

Brian G.M. Durie, chairman of the International Myeloma Foundation, explains that once veterans get a VA appointment, things often improve. “Although there have been scheduling issues for veterans with cancer, once they get access, they actually get pretty good care,” says Durie, a medical oncologist. “Compared to the commercial side, where there are issues of cost, access and other problems, if you’re diagnosed with cancer in the VA system, you can usually get the drugs and treatment you need.” In addition, a 2011 study found that, unlike in the private sector, there is little difference in levels of care provided by the VA based on location.

Matthew Rettig, medical director of the prostate cancer program at the Institute of Urologic Oncology at UCLA, adds that the VA has “social workers and an excellent palliative care service that can provide...emotional and spiritual support and access to mental health experts.”

Until 1997, the VA offered no access to clinical trials, but that year the agency signed an agreement with the National Cancer Institute (NCI) providing coverage to veterans participating in trials at both VA and NCI facilities. Before that time, veterans usually had to enroll in research initiatives at their own expense. Today, a new partnership between the agency and UCLA — the first of its kind — aims to provide new drugs and treatment methods to veterans. “We’re working to increase access to clinical trials in the VA in several ways, including partnerships with NCI and pharmaceutical companies,” says Kelley.

Another bright spot is the recent announcement of a Cancer Moonshot program headed by Vice President Joe Biden, who lost his son Beau, a National Guard veteran, to brain cancer in 2015. The initiative will see the VA partner with the NCI, the Prostate Cancer Foundation and other entities with the aim of revolutionizing cancer research and care through applied technology. The Department of Energy and IBM are donating time on their supercomputers to accelerate the research process; IBM’s Watson will help match veterans with cutting-edge, precision cancer treatments.

For Tim Smith, the prospective changes are moot: He decided to use his private insurance to obtain treatment after seeing media reports about the VA.

“I wanted to make sure and get this thing taken care of quickly,” he says. “When I heard about the wait-time constraints, I just couldn’t risk it.”

A recent CT scan showed that he is now cancer-free.

If the proposed changes work, perhaps the VA will become the first and best choice for more veterans who need cancer care.