Tennesseans fight their insurance company while fighting cancer
Earlier this year at her annual mammogram, Lou Lovingood got the news no one wants to hear: she had breast cancer.
“They found one spot and did an MRI,” Lovingood said. “And during the MRI they found a spot in the other breast.”
Lovingood’s doctor said she needed a lumpectomy and then proton therapy to minimize the damage she would get to her heart and lungs from traditional radiation. That was scary enough on its own, but then she found out she would not only be fighting cancer, but she also had to fight her insurance company.
Even with one of the few proton treatment centers in the country and the manufacturing plant, both in our backyard, Tennessee insurance companies aren’t required to cover proton therapy. Lovingood said her insurance wouldn’t even consider it.
“I thought how dare you tell me what I should or shouldn’t do. Insurance companies are not doctors and they don’t know what’s best for me,” said Lovingood. “I trust the doctors that I have and I trust what they tell me to do. Not an insurance company that sits in Chattanooga on a hill.”
Lovingood said BlueCross BlueShield of Tennessee has denied her coverage for proton therapy three times, even though it worked. She graduated from treatment over the summer as Provision Center’s 500th patient.
“In the case of proton beam therapy, it’s considered investigational,” said Mary Danielson, a spokesperson for BlueCross BlueShield of Tennessee. Danielson said BlueCross BlueShield based its decision not to cover proton therapy on scientific literature.
When it comes to comparing proton therapy and radiation, many of the studies, like one of the practice parameters for proton therapy by the American College of Radiology, point to a lack of “clear evidence documenting the superiority of proton radiotherapy.”
“The scientific evidence is not available that supports that it’s as beneficial or more beneficial than current existing cancer treatments,” said Danielson, adding that the company doesn’t think proton therapy is “medically necessary”.
However, one of the reasons doctors suggest proton therapy is because it can target the actual tumor instead of the area of the tumor, damaging less healthy tissue and organs around the cancer. “It’s the difference between life and death in some cases,” said Bill Hansen from Provision Center for Proton Therapy. “In Lou’s case it was the difference of the types of side effects she was going to live with if she didn’t get it.”
With more than 600 patients treated in the year and a half Provision has been open, Hansen feels like the treatment’s success has proven itself and should not be considered “investigational.”
“It is new to Tennesssee, but proton therapy has been around since the 60s. It’s been covered by Medicare since the 90s and FDA approved since 1988,” said Hansen. “It’s not an experimental treatment for cancer. It’s been used for over 100,000 patients.”
Lovingood said even though she’s on her third appeal, she is going to continue to fight her insurance company while she pays for her treatment out of pocket. “It’s a terrible feeling when you’re fighting a disease and then you feel like you’re fighting to get the right treatment,” she said. “It’s the gold standard of treatment, it is at our backdoor. And it’s not available because insurance refuses to pay. Unacceptable.”
Fight in the Tennessee legislature
Some Tennessee legislators think the coverage should be required. For the last two years, a bill has been filed to require insurance companies to offer coverage for proton therapy treatment.
During the Spring 2015 legislative session, Senator Doug Overbey sponsored the Cancer Patient Choice Act. He said it was not a mandate, but would have allowed proton therapy patients to be reimbursed for the same amount of money radiation therapy would have cost.
“This bill does not mandate any new coverage. It does not mandate the insurance carriers cover anybody they’re not currently covering,”said Overbey. “This is simply to give patients a choice, a treatment choice; allow patients and their doctors to choose the treatment that’s going to be most effective for these patients.”
Senator Overbey said it wouldn’t have brought on any additional costs to the insurance companies because the coverage would be for patients they were already covering. He said it just provided another option at the same price as approved treatments. Even so, he couldn’t even get the bill to a floor vote.
“I know some folks have said, ‘Well this is experimental, this has not been proven’. That is simply not the case. This is proven science. Medicare covers proton therapy. Children’s health insurance covers proton therapy. So to me that shows it’s not experimental that it’s being covered by Medicare and the children’s health program,” the senator said. “What we’re really saying is if you’re 19 or younger you have this treatment option, if you’re 65 and older, you have this treatment option. But if you’re unfortunate enough to be 19 to 64, you don’t have this treatment option and that is simply not right.”
Senator Overbey said he wants to continue to push the policy and the discussion of whether to do so is ongoing.