Michael Johnson watched his father, retired U.S. Marine Corps veteran John Johnson, die prematurely almost three years ago from mesothelioma after the VA health care system misdiagnosed and mishandled his case more than once.
His biggest point of contention, which ultimately cost his father’s life, is that patients within the VA health care system have no way of knowing there is a mesothelioma specialty center that can provide the care they need and likely extend their lives.
“It’s mind-boggling the way the VA works,” Johnson told Asbestos.com. “If my father had been diagnosed correctly, he’d still be here today. He believed in the VA, but it absolutely let him down.”
Despite the recent and much-chronicled change of leadership within the U.S. Veterans Health Administration, veterans with asbestos-related diseases and their families say the federal agency continues to mistreat them.
Johnson and his family have made it their mission to help correct a glaring flaw in the system by reaching out to federal VA leaders and pledging financial support to specific cancer centers that treat veterans with mesothelioma.
An estimated 3,000 Americans are diagnosed annually with mesothelioma, and approximately one-third of those are veterans, a disproportionate amount that stems from the military’s extensive use of asbestos materials in the 20th century.
John Johnson served in the Marine Corps in the early and mid-1960s, spending significant time in Vietnam.
He started treatment at the North Las Vegas VA Medical Center close to where he lived, but was later sent to the VA Long Beach Healthcare System.
No one at either facility told him about the Comprehensive Mesothelioma Program, which could soon become known as the Elmo Zumwalt Mesothelioma Center of Excellence, at the West Los Angeles VA Medical Center. The program, named after a U.S. Navy admiral who died from mesothelioma in 2001, is run by thoracic surgeon Dr. Robert Cameron, one of the world’s most renowned mesothelioma specialists.
Unfortunately, the VA’s main website doesn’t provide information on the center by its current or future name, either. By the time family and friends helped Johnson find Cameron’s program in 2012, it was too late. His cancer already had grown out of control.
“My goal is that this kind of thing doesn’t happen to another veteran,” Michael Johnson said. “Even the doctors in the VA system didn’t know it was out there. There obviously is no communication within the system, and that’s unacceptable. Maybe the VA doesn’t want to own up to the fact that this disease is military, war-related.”
Most doctors throughout the system also have no idea Cameron’s program exists. Johnson says there is no encouragement within the VA System to send a patient to a specialty center.
“My father fought for his country. How many more veterans have to die prematurely before something is done?” he said. “I’m not going to rest until we see something done to help those in the future.”
The VA’s lack of information prompted Johnson to take matters into his own hands.
He wrote letters and left messages with the office of former U.S. Department of Veterans Affairs Secretary Eric Shinseki, who was ousted in May when officials discovered widespread mismanagement of the system.
Johnson never received a response to those calls and letter.
He again sent letters expressing his concerns about the lack of information to Robert A. McDonald, the new VA secretary, before and after his confirmation this summer. He also recently published a video on his Fight Mesothelioma website that is critical of the VA.
The video outlines his concerns in hope of prompting some action from the federal agency. But again, Johnson has not heard from McDonald or any other VA official.
“Despite multiple requests and promises, the VA has yet to perform the simple administrative task of updating its website about the existence of the [mesothelioma] program,” Johnson states on the video. “There is no effort to educate our war heroes stricken with this cancer. There is no effort to publicize or build the program. That’s negligent, and that’s wrong.”
His family, in John Johnson’s honor, pledged their financial support to the West Los Angeles VA and the Pacific Meso Center, where cutting-edge research and treatment of non-veterans is taking place. While the VA has stamped its approval of the mesothelioma program, it has not yet provided funding to ensure its continuation.
Cameron and Graciela Hoal, RN, NP, who works with mesothelioma patients at the West Los Angeles VA, has told Asbestos.com they are frustrated by the VA’s lack of interest in the program.
“One of the biggest challenges we face is trying to get the word out to make people aware of what we have here,” Hoal said during the summer. “Veterans are lucky to have [Cameron] in the system. A great specialist can make a difference.”
Cameron is one of only two thoracic surgeons within the VA system who specialize in mesothelioma. Dr. Abraham Lebenthal, of the Boston VA Healthcare System, also has been trying to attract veterans and offer his services. He splits his time between the VA and Brigham and Women’s Hospital, also in Boston.
Veterans are entitled to seek treatment anywhere by a VA doctor once they are in the system. If a patient can get a referral from their primary care doctor, the VA also will pay travel expenses.
“The VA system is frustrating, but I think my father deserves a response. All our veterans do,” Johnson said. “Millions of vets were exposed to asbestos while serving their country. They did their duty. Now it’s the VA’s duty to serve the brave soldiers and sailors who served their country.”