Health care coverage denial hits Londonderry family hard
New Hampshire Union Leader
Ellen and Chuck Sanborn played by the rules. A nurse and electrician, the Londonderry couple worked hard, raised a successful family, helped their community and faithfully paid their health insurance premiums.
But after Ellen was diagnosed with brain cancer in November, they discovered a hard truth that’s become apparent to many Americans — having health insurance is no guarantee of treatment when you need it most.
Instead they turned to bake sales, live music fundraisers and an online GoFundMe page in the hope of raising the money necessary for the radiation treatment recommended by Ellen’s doctors at Massachusetts General Hospital.
It’s not that their insurance company won’t approve any treatment. Cigna has approved $123,000 for conventional radiation treatment with high-energy X-rays, known as photon therapy.
Because of the location of the tumor in the temporal lobe of the brain, which affects language and comprehension, oncologists at Mass. General want Ellen to be treated with a newer technology, known as proton therapy.
Proton therapy poses less risk to nearby healthy cells or organs than conventional photon therapy, but would cost more than $200,000.
“My mom means the world to me, and I want her to get the treatment she needs and deserves,” said Ellen’s daughter, Elizabeth Rios, who along with the rest of the family, has waged a three-month battle with Cigna and Chuck’s employer, BAE Systems.
Like many large companies, BAE self-funds its health insurance program and hires a health insurance company (in this case, Cigna) to administer the plan. After three denials from Cigna, the family took their case directly to BAE, which owns the plan and has the power to override the administrator’s decisions.
At first they were optimistic. After all, Chuck had worked for the company for more than 10 years. In that time, the family of six had only one significant health insurance claim and that was for Chuck’s knee surgery.
Elizabeth works for the defense contractor as a supply chain planner and her husband works there as an engineer. Surely BAE would look favorably on the desperate appeal of a family with such a stake in the company.
But that would not be the case. After three appeals, BAE refused to intervene, with the final decision arriving by email on Jan. 13.
“Your request has been reviewed thoroughly through the appeals process, including by several different medical directors as well as by a third party Independent Review Organization that is completely separate from the health insurance plan and the company,” wrote Vice President for Corporate Benefits Cindy Donohoe.
“At each step, they have concluded that this treatment is not superior to the approved standard of care, IMRT using photon beam.”
Because the first several steps in both treatments are nearly identical, at a cost of about $75,000, the family asked BAE to approve that amount for proton therapy, which seemed reasonable since the company had already pre-approved $123,000 for photon therapy.
BAE declined, citing the fear of creating a precedent.
“Unfortunately, we cannot accommodate your request to decouple the procedures from the denied treatment plan,” wrote Donohoe. “To do so would mean making individualized determinations regarding medical care for our 32,000 employees and their dependents, something we simply cannot and should not do. Accordingly, when a treatment is denied … all procedure codes that support that treatment are denied.”
The family is now in a race against time to get the treatment that will afford Ellen, 55, the best chance of full recovery, according to her doctors.
She was in good health until one night in late September when she suddenly lost her ability to understand and communicate simple words and phrases. Doctors at Parkland Medical Center determined that she was experiencing a seizure. After multiple tests at Mass. General, she was diagnosed with brain cancer.
Doctors operated immediately and were able to successfully remove 90 percent of the tumor, but the remaining portion was deemed inoperable due to its location. Although Ellen has recovered most of her cognitive function, elimination of the remaining tumor by radiation is key to her long-term prospects.
“Our mother’s treatment was supposed to start on Nov. 16, but due to the denial from the insurance we have not been able to even schedule the treatment. Our family is down to our last option, which is paying for the proton radiation treatment out of pocket,” writes Elizabeth on the family’s GoFundMe page, where 800 people have already contributed more than $90,000 in one month.
The generosity of friends, and in some cases strangers, has inspired the family, which has an extensive social and professional network.
Ellen has been a staff nurse and clinical leader at Southern New Hampshire Medical Center and an instructor in the Department of Nursing at St. Anselm College.
“We have a large family, and my siblings all went to college,” says Elizabeth. “We have college friends, high school friends, gym friends, so we’ve been having as many fundraisers as we possibly can.”
Beyond the personal connections, Elizabeth says the family’s plight resonates with many people who’ve shared similar stories. “People believe in this cause because they see this happening a lot,” she said.
A group of BAE employees has organized a Feb. 12 live-music and food fundraiser for the cause at Milford VFW, with everything donated so all proceeds go to the fund.
While the experience has disappointed and angered the family at times, they harbor no ill will toward the company that employs three of them. “I don’t want this to be a BAE-bashing,” Elizabeth said.
Instead, they’ve been encouraged by the outpouring of support. As Elizabeth puts it, “There are a lot of very generous people out there, as you can see from our site.”