Pfc. Donald Burpee spent four months of 1975 living at Camp Lejeune, a Marine Corps base in North Carolina. On July 7 of this year, at the age of 59, he lost an eight-year battle with kidney cancer -- one of a number of illnesses linked with exposure to the toxic chemicals that tainted the drinking water at Camp Lejeune between the 1950s and 1980s.
The Department of Veterans Affairs provided Burpee with medical coverage, including hospice, but repeatedly denied his claims for disability benefits. Burpee died not knowing whether his wife, four children and four grandchildren would be taken care of in the future.
"They throw up so many roadblocks to you, it's unreal," said Brenda Burpee, Donald's widow.
Camp Lejeune's water was contaminated by dozens of chemicals beginning in at least 1953, though it was only discovered in the early 1980s. The contamination has been traced to leaking underground storage tanks, industrial spills and the disposal of solvents from an on-base dry cleaner. Among the chemicals, trichloroethylene (TCE), perchloroethylene (PCE), vinyl chloride and benzene are thought to be the most damaging to human health. Lejeune veterans have reported ailments including prostate and bladder cancer, as well as chronic kidney disease. Kidney cancer is not uncommon.
Burpee's family found the VA's denial baffling. Given the science supporting a connection between exposure to TCE and kidney cancer, what was the rationale for withholding disability?
The family learned that the VA's decision rested largely on the opinion of one of 22 experts recently hired by the agency to review veterans' claims, part of what's known as the subject matter expert program. The program was launched in 2013 to ensure "consistent and accurate decisions for Camp Lejeune veterans," according to internal VA documents. But veterans' advocates and scientists have raised troubling questions about the experts' decisions, and critics speculate the program may be part of a push to deny claims and evade the responsibility to care for veterans who have served the country.
A deeper problem at the VA
The doubts about the SME program reflect wider concern about how the VA has treated current and former military personnel who may have been sickened by environmental exposures, including residual Agent Orange on repurposed aircraft, burn pit smoke in the Middle East and plumes of radiation following the Fukushima disaster. As The Huffington Post reported last week, veterans are increasingly voicing frustrations about delayed and deficient help.
An aide to Sen. Richard Burr (R-N.C.), who has been a vocal advocate for veterans exposed to toxicants, described the SME program as "part of a broader institutional resistance" within the VA regarding environmental exposures.
Retired Master Sgt. Jerry Ensminger, who has devoted nearly 18 years to research and advocacy on the issue, said the VA is currently approving fewer than 5 percent of disability benefit claims filed by Lejeune veterans. Prior to the 2013 launch of the claim review program that led the VA to deny Burpee's disability benefits, Ensminger added, that figure hovered around 25 percent. (The VA confirmed the current 5 percent approval rate when contacted by HuffPost, but couldn't confirm that the rate was 25 percent before 2013.)
"Who can win in a game where your opponent is allowed to change the rules in the middle?" Ensminger asked. "This is what they've done with the SME process."
Gerald Cross, chief officer for the VA's Office of Disability and Medical Assessment, maintained that his agency stands by the SMEs, including Dr. Deborah Heaney, who reviewed Burpee's case. He said the program is intended to incorporate the insight of experts who read "every single one of the relevant research reports" as they review the veterans' cases, doing “everything possible on their behalf.”
To that end, Cross said the agency provides SMEs -- who are generally physicians credentialed in environmental or occupational health -- with a training course, as well as regular phone calls to keep up with current science. But critics say this hasn't kept SMEs from using outdated data, cherry-picking results and doctoring documents to support their opinions.
Heaney never actually saw Burpee, but she reviewed his file. In her first review, in February 2014, Heaney said exposure to the contaminated water could not be linked to Burpee's cancer or other medical conditions. Referencing Heaney’s opinion, the VA decided not to grant Burpee disability benefits.
Among the primary evidence Heaney cited was a report on the Camp Lejeune water contamination published by the National Research Council in 2009. The report, which was commissioned by the U.S. Navy, seemed to absolve the military of responsibility by concluding that the scientific evidence available at the time wasn't sufficient to determine a link between exposures at Lejeune and adverse health effects.
But environmental health experts disagree. In fact, shortly after the report was published, the Agency for Toxic Substances and Disease Registry, part of the Centers for Disease Control and Prevention, expressed its disagreement with the NRC's methods and conclusions. Moreover, agency director Pat Breysse said that for the purposes of the SME reviews, the NRC's report is so out of date that its "conclusions are no longer relevant."
Heaney also said that Burpee's obesity, hypertension and history of smoking were all more likely to have caused the kidney cancer than the water contamination. But according to Frank Bove, a senior epidemiologist at ATSDR, that claim also doesn't match the scientific consensus of recent years.
"TCE causes kidney cancer. Period," he said.
Bove explained that while TCE exposure alone might not be enough to cause cancer, it likely worked in concert with other risk factors such as genetics, smoking and obesity -- each of which are also unlikely to be the sole trigger. Any one factor, including the chemical exposure, could prove to be the final straw.
However, a VA PowerPoint presentation used to train SMEs, obtained by HuffPost, appears to encourage the experts to pin the cause of disease on a single factor, rather than acknowledging the role of multiple causes. As a result, experts' assessments may wrongly discount the relevance of the water contamination at Lejeune.
The PowerPoint presentation does include reference to a study of Bove's that links the Lejeune contamination to increased cancer death rates. However, the study is portrayed in a misleading way: The slide highlights the absence of an increased death rate from prostate cancer among Lejeune veterans, but ignores the elevated rates of death from several other cancers, including lymphoma cancer and kidney cancer.
Moreover, the presentation refers to dated studies that suggest a more ambiguous connection between the chemicals and cancer, while excluding more recent reports from agencies such as the Environmental Protection Agency and World Health Organization, which have found clearer links.
In a joint phone interview with Heaney, Cross and two other VA staff members, Heaney told HuffPost that not all of the relevant studies from Bove's team had been published before her initial review of Burpee's case. Still, in her most recent opinion -- from June 2015, when all of the current studies were available -- Heaney maintained her initial verdict.
During the interview, Cross attempted to keep Heaney from answering further questions, noting that the agency prefers not to provide comment on any specific case. He also emphasized that claim decisions don’t rely fully on an SME’s opinion -- recommendations from VA staff and other evidence like private doctors’ statements are also considered.
A troubling pattern
Heaney is also facing accusations about her connections to a law firm that defends corporations and "government entities" in toxic exposure cases. This past March, she reviewed another disability claim for kidney cancer. Her opinion on Pfc. Scott Duncan's case employed a rationale similar to the one she used to deny Burpee's claim, including reference to the outdated NRC report. The result was also the same: a VA denial.
Duncan had submitted letters from three other doctors with his claim, all of whom stated their belief that his illness was likely linked to the tainted water.
“There are probably some claims that shouldn’t be approved,” said Duncan, 53, who was stationed at Camp Lejeune from 1980-1981. “I would just like the VA to look at our claims in a fair and balanced way. The scientific evidence is there.”
The scrutiny of the SME program goes beyond Heaney. Cpl. Norman McAleney, 58, lived at Camp Lejeune between 1977 and 1979, and also suffers from kidney cancer. He, too, was denied disability benefits by the VA.
McAleney doesn't know which SME reviewed his claim. Burpee and Duncan are among the few veterans who learned the identity of their reviewer -- through inside sources in Burpee's case, and, in Duncan's case, from a surprise inclusion of the SME's opinion in a request for his VA medical files.
McAleney has his own term for the SMEs. “I call them hired guns,” he said. The VA declined to provide HuffPost with the names of all 22 SMEs.
In July, an Orlando news station, WKMG Local 6, highlighted questions raised about two other SMEs hired by the VA -- one of whom allegedly cut and pasted from a Wikipedia page in his opinion that led to a denial for a claim concerning a rare form of non-Hodgkin’s lymphoma. Other accusations against the two included doctored language and a lack of relevant qualifications.
In all the denial letters reviewed by HuffPost, including those addressed to Burpee, Duncan and McAleney, decisions also cited the fact that the veterans never sought treatment or complained of symptoms during active duty. But as Richard Clapp, an environmental health expert at the Boston University School of Public Health explained, cancers can take years, often decades, to develop.
This lag also means many more illnesses may be forthcoming for the more than one million Marines, family members and civilians who were potentially exposed at Lejeune, Clapp added.
"This is still a relatively young cohort,” he said. “It'll be several more years before the full picture emerges.”
Burr met with VA Secretary Robert McDonald earlier this month concerning what the North Carolina senator alleges is a "questionable pattern of denials of Lejeune veteran claims."
"This is a serious problem," he told HuffPost in an email. "I expect the VA to correct this longstanding problem and do the right thing for Lejeune veterans. Until then, I will continue to hold the VA accountable."
Cross noted that his agency has so far only used SMEs for Camp Lejeune cases. But he added that the program is a "good template" for how to approach complex, scientific claims that require the ability to analyze shifting developments in current research.
"One of the characteristics of our SMEs is their absolute dedication and support of our veterans to give them the best possible review and do everything possible on their behalf to find something that helps them," said Cross. He acknowledged the accusations against some SMEs, noting that the VA has reviewed and "cleared them away."
Though the VA only recently started using SMEs, this isn't the first time the agency has hired outside experts on environmental exposure issues -- experts who have allegedly obscured the facts and caused delays in help for sick veterans. One such VA contractor consistently argued against former Air Force reservists' claims that they had been exposed to small amounts of Agent Orange on repurposed airplanes in the 1970s and 1980s. Scientists ultimately proved the consultant wrong and the veterans correct. In June, a VA policy change extended Agent Orange-related medical and disability benefits to the reservists.
Brenda Burpee said a posthumous claim approval for her husband would still be a huge help to her now. "I'm a disabled person myself, and get a small Social Security check every month," she said, adding that her husband's eight years of medical care "wiped out" their savings. She said she's carrying on Donald Burpee's mission to spread the word among sick Camp Lejeune veterans, many of whom remain unaware about the potential link between their time on the base and their medical conditions.
"They deserve better," she said.