Benjamin J. Lambert IV, a member of one of the most prominent Black families in Virginia’s public service history, lost his battle to prostate cancer on Monday, June 3, 2019. He was only 52. His father, Virginia Senator Benjamin J. Lambert III, his grandfather, and four uncles also all died of prostate cancer, according to Lambert family members.
The Lamberts are just seven examples of the thousands of Black men per year – from every socio-economic walk of life and every part of the U. S. – who are disparately diagnosed with prostate cancer. Not only is the rate of prostate cancer among Black men higher than Whites, but the chances of Black men dying from it are more than double that of White men and men of other races, according to the National Cancer Institute.
But doctors and medical administrators across the nation believe these grossly disparate numbers can be minimized or at least equalized by one form of cancer therapy that top-level cancer doctors and researchers say could pivot the death disparities. The therapy, called Proton Beam, specializes in zapping cancer cells with laser focused radiation without damaging surrounding non-cancerous tissues. Some of the top medical universities across the nation have proton beam centers; including Harvard, MD Anderson, the Mayo Clinic, and Johns Hopkins.
This is the reason that a list of insurance agencies are currently under fire by cancer advocates across the nation for refusing to cover the cost of proton beam therapy. For example, even after the Virginia General Assembly passed a bi-partisan bill, that encourages insurers such as Anthem, Aetna, Cigna and Humana, to stop labeling the FDA-approved treatment as experimental, Anthem is still under fire for what is deemed as unfair decisions that, in some instances, are believed to have led to deaths.
In doing so, the insurers had been covering the other forms of treatment by radiation mainly because of the lower costs, reported Jeremy Lazarus for the Richmond Free Press as the bill passed through the General Assembly during its spring legislative session of 2017.
The Free Press article quoted Anthem spokesman Scott Golden as saying Anthem stopped covering the therapy after finding “no clear scientific evidence that proton beam treatment for localized prostate cancer is equal to other forms of conventional photon radiation therapy.”
But that was before Virginia’s General Assembly passed the law prohibiting insurers from holding proton therapy to a higher standard in comparison to other therapies. Although the law does not mandate coverage for any specific case, according to Virginia’s Legislative Information System, the law “Prohibits health insurance policies and plans from holding proton radiation therapy to a higher standard of clinical evidence for benefit coverage decisions than is applied for other types of radiation therapy treatment. The measure applies to policies and plans that provide coverage for cancer therapy.”
The Virginia Legislature’s move to make law concerning the issue was mainly because the refusal to cover Proton therapy has baffled cancer experts and advocates alike.
“Proton therapy is a medically necessary, FDA-cleared treatment for cancer patients,” says a report by the D.C.-based Alliance for Proton Therapy Access (APTA). “For many cancer patients, proton therapy is prescribed by their physician and is the optimal and most effective treatment option. Studies have shown that proton therapy can help increase survival, reduce the risk of secondary cancers, result in fewer acute and long-term conditions as well as debilitating short-term side effects and improve quality of life for individuals undergoing cancer treatment,” states the APTA report titled, “Cancer Care Denied: The Broken State of Patient Access to Proton Therapy.”
Daniel E. Smith, executive director of the APTA, says the coverage denials are often shocking and have led to death.
“It’s inconceivable that an insurer would play games with a disease like cancer, where a diagnosis can be a matter of life or death. Cancer patients wait days, weeks, or even months for an opaque appeal process to play out while their cancer and anxiety grow – they must either start treatment without their insurer’s approval and no guarantee of payment, continue waiting, or opt for a cancer treatment that is less effective or poses higher health risks. We can no longer tolerate a process that endangers the lives of cancer patients who don’t have time on their side,” Smith said in a statement to the Trice Edney News Wire. “Our report shows that private insurers deny proton therapy six out of 10 times for patients aged 18-64. While improper denials are reversed a third of the time, appeals take an average of five weeks; and that’s time cancer patients do not have when fighting an aggressive disease.”
The Lambert family pleaded for what they believed could be the life-saving treatments for Benjamin IV.
“I am writing this letter to you, our elected officials in the Commonwealth, in order to solicit your help to save the life of my son,” wrote his mother, Carolyn Lambert, to Republican Sen. Frank W. Wagner and Democratic Sen. Richard Saslaw on Feb. 10, 2017, nearly two years before his death. Our medical team in Arizona has recommended that Benjamin’s best chance at life is with proton therapy. Fortunately for us, there is a proton facility just an hour away from our state capitol at Hampton University.”
Even after the bill passed, Anthem continued to deny the coverage, ultimately forcing the Lambert family to shoulder the cost of the therapy. But by then, it was too late. Benjamin IV’s widow, a nurse and mother of his two children, believes he would have lived had Anthem initially covered the treatment.
Meanwhile, the Free Press article reported that “advocates note that the same insurers that refuse to cover treatment in Virginia are willing to provide coverage for patients that travel to proton therapy centers in other states.”
This apparent discriminate behavior has drawn the ire of Bill Thomas, associate vice president for governmental relations at Hampton University, which has an 11-year-old Proton Beam Center that costed $225 million. Thomas has led the fight in Virginia against the apparently racially discriminate coverage.
“Proton beam is just a therapy. But it’s the best therapy in the world because all the top cancer centers in America have proton beam. There’s nobody arguing with Harvard about this. There’s nobody arguing with Johns Hopkins about this. There’s nobody arguing with MP Anderson about this. They’re arguing with a Black school,” Thomas said in an interview. “The medical efficacy has been proven. The General Assembly took us through a four-year drama of even approving this law, so, all the issues have been discussed, adjudicated, and denied and that’s why they came up with the law. All we’re interested in is for the attorney general for the Commonwealth of Virginia to make Anthem obey Virginia law. It has nothing to do with anything else…Anthem – against Virginia law – did not pay for his insurance coverage,” said Thomas, referring to Lambert’s case.
Thomas continued, “They originally were turning people down point blank, saying that proton therapy was investigational and experimental. That’s a lie. It’s FDA approved. Now let me put that in context. That’s how we got the law passed because the insurance companies were lying.”
Thomas’ view is that with Black men dying from prostate cancer at twice the rate of Whites and others, insurers who go out of their way to deny the prostate treatment at Hampton are considered suspect. About 30 percent of the patients there are Black men, Thomas says.
Besides that, Petersburgh, Va., which is 79 percent Black and less than a hundred miles from Hampton, has the highest death rate of Black men from prostate cancer in the U. S., according to an article reported earlier this year by the Massey Cancer Center at Virginia Commonwealth University. The statistic was a quote from Luisel Ricks-Santi, director of the Hampton University Cancer Research Center.
Whether or not insurers are intentionally discriminating in their decisions about what or who they cover, their conduct is being monitored and documented by the U. S. government, particularly the National Institute of Health (NIH), which has designated Hampton University as a center of excellence for biomedical research.
“Not surprisingly, racial biases continue to impact such decisions, with reports showing that historically, black men undergo less aggressive treatment and more watchful waiting (WW), even after adjusting for socioeconomic status,” states an NIH study. “Within the context of high-risk disease, numerous studies have shown a clear racial variation in the primary treatment of prostate cancer, including more use of WW and lower use of radical prostatectomy (RP) among minorities compared to their white counterparts.”
For many of the families and loved ones of prostate cancer patients left behind, there is no need for proof.
“I think that if proton therapy were an option, I think he would still be here,” said Mary Lambert, the widow of Benjamin Lambert IV, in an interview. “We appealed it. We had doctors write letters, we saw different specialists, and they flat out refused. We went to the insurance after it was passed into state law in the state of Virginia and Terry McAuliffe who was governor at the time and he signed an emergency deal to make it law immediately, stating that proton therapy could be held at a higher standard than photon therapy. And they are still refusing to adhere to the letter of the law.”
Their children, a son and daughter who were ages 9 and 12 respectively when Lambert died, are now in middle and high school.
“I think he would still be here living a full life and contributing to his community and society as a whole,” Mary Lambert said. “At this point, I am just so beat up. I think this is ultimately their goal when they do this stuff. You know, they want you to just accept what they say and go away.”
Smith, of the Alliance for Proton Therapy Access, agrees: “We have worked with far too many cancer survivors who waited days, weeks, or even months, for a broken review and appeals process to play out while their cancer and anxiety grew. It’s time to hold insurers accountable for providing fair, timely, and transparent access to cancer treatment.”