HAMPTON, Va. (Aug. 31, 2017) – It happened like a flash. Hampton University Proton Therapy Institute (HUPTI) Assoc. Vice President for Governmental Relations Bill Thomas casually handed an envelope to Jack Weber during a press conference. That envelope contained life-saving news for Weber’s wife, Diane.
“This day is precisely why Hampton University decided to open a free-standing center to offer life-saving proton therapy for cancer patients. We are saving lives every day,” said Hampton University President Dr. William R. Harvey. “And today we helped a patient and her family navigate the obstacles to save her life.”
For many cancer patients, the right therapy is a matter of life and death. However, many patients find themselves locked out as insurance companies still refuse to provide them coverage for proton therapy that HUPTI daily gives to its patients.
Since Virginia House Bill 1656 was passed and signed by the governor with an emergency provision in March, Virginia patients, including Weber, have repeatedly been denied coverage by their insurance providers.
“This was not what the governor and the legislature intended when they passed this law, that we would have to go through this,” Jack said.
Diane has a recurrence of cancer that first attacked her lower digestive tract five years ago. Chemotherapy and more invasive photon radiation therapy had previously been prescribed, but the cancer came back earlier this year and a tumor grew around her aortic bifurcation (where the aorta branches toward the legs). Since chemotherapy stopped working, and photon therapy had reached its limit without risking permanent damage to her digestive system, doctors ordered less-invasive proton radiation therapy.
The Weber family originally prepared to move to Houston for proton therapy, but that move halted when their insurance, Anthem Blue Cross Blue Shield of Virginia, denied their claim, citing 2014 (and older) data calling proton therapy experimental. Jack went to work.
“They picked on the wrong family,” Jack, a former insurance lobbyist in Washington, said.
Aug. 16, Dianne's insurance provider, Anthem Blue Cross Blue Shield of Virginia, denied her claim. A week later, they denied her appeal, citing an outdated ASTRO policy from 2014. Their reasoning: they continue to brand proton therapy as experimental, even though proton therapy was approved by the FDA more than 30 years ago.
Weber again appealed to Anthem, showing clear evidence that Anthem’s denial was based on obsolete studies from wholly-owned Anthem entities that are supposed to be independent medical boards Weber said are not. His appeal for his wife was denied again Aug. 25.
Thomas, who now was involved for HUPTI as an advocate, had enough. While an appeal went to Virginia’s State Corporation Commission’s Bureau of Insurance, he called a press conference to take the battle to the media.
As cameras rolled and reporters were taking notes about Weber and HUPTI’s battle, Aug.31, the commission ruled. They first notified Diane, who was at home and too sick to travel from suburban Washington to Hampton. Thomas handed the envelope with the good news to Jack. He opened the envelope as the press conference wound down and Thomas was thanking the media for its coverage. Jack teared up in the background as Thomas spoke.
“I was just handed the appeal that we won,” Weber said. “But this is not about my wife. We won because we pushed harder than everyone else. I want to know what happened to… the families who didn’t know how to fight.”
Thomas was ecstatic about the good news, too.
“We are joyous,” Thomas said. “We’re a university which acts on morals and principles. It is our moral obligation to stand up against wrong and eliminate it. The principle here was simply right and wrong. This is not the end of the battle. This is just the beginning of the fight.”
Editor's note: Katie O'Connor of the Richmond Times-Dispatch contributed to this article.