They declined to pay for chemotherapy: Overturning an insurer's denial

David Foglesong, a history professor from Montgomery Township, N.J., began searching medical databases soon after Horizon Blue Cross Blue Shield of New Jersey declined to pay for a targeted chemotherapy treatment for his wife, RoseMary. During one library visit, he found a new study that showed the treatment had helped patients with conditions similar to his wife's disease, advanced sarcoma that had spread to her liver.

The couple, advised by Patient Advocate Foundation, a nonprofit group, solicited new letters from RoseMary's doctors, and her primary oncologist argued on her behalf in a conference call with the insurance company's reviewers in June. The company reversed its earlier decision, and RoseMary, 49, got the treatment in July.

Horizon officials say the procedure was initially denied because it was deemed experimental and not the standard for Ms. Foglesong's condition. The company said a review committee reversed that decision because of the "whole totality of her case," including the medical literature.

Advice for denied insurance beneficiaries: Look into it like David did, and consider filing an appeal with your insurer.

Read another insurer denial story.

Thanks to Anna Wilde Mathews for the source story in the Wall St. Journal's Personal Finance section today.

What do I have to lose?: Experimental stem cell therapy

I have been tossing and turning all night wondering where I get my strength, but I dig deep and find the answer, always, somewhere in my mind's abyss. A friend told me yesterday [now a year ago] that this will be my calling when I get better to breathe life back into people and talk about my experience with this illness and my journey to get better.

Drew Schemera, 35, wrote this in his blog, The Journey, a year ago before going from his Connecticut home to Beike Biotechnology in China for experimental stem cell therapy, six months after being diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease), and being given a life expectancy of 2.5 years.

He feels he did the right thing. There were "no clinical trials in the USA of any significance and no cure on the horizon," he wrote. "I made a choice to come to China and work my butt off in therapy and change my diet, and I'm slowing it [ALS] down. I probably will die from ALS, but I'll be damned if I'm not going down swinging! What do I have to lose?"

However, experts at the International Society for Stem Cell Research and elsewhere caution that professional standards for stem cell therapy have not yet been set. Dr. George Daley, the president of the Society, decries a "misconception by some patients that the cure is already here." He adds, "We need to be clear that the path to cures is a long and arduous one."

Advice: Make your own critical decisions, after careful thought.

Thanks to Neil Munshi for the source story in the Boston Globe of June 13.

She's attending first grade, and doing very well: Experimental treatment for a malignant brain tumor

Melanie Joy McDaniel was 9 months old in 2002 when her parents faced an agonizing decision. She had already had two operations for an ependymoma – malignant, progressive brain tumor - and doctors could not be sure they had removed all of the cancer. She needed more treatment, but standard chemotherapy offered little hope in exchange for its harsh side effects. And yet her parents knew that if they did nothing, the odds were high that the terminal cancerous tumor would return.

Doctors at Dana Farber Cancer Institute in Boston offered another option: an experimental treatment. Melanie's parents took a gamble, and signed her up. "It won't save her, but it may help other people," said Paul McDaniel, her father.

Recently, her father wrote to NY Times writer Denise Grady, "Melanie is now 7 years old, attending first grade, and doing very well. The doctors do not see any residual tumor in her brain. Their original diagnosis was that her tumor had no known cure."

The developer of the treatment, Dr. Judah Folkman, passed away on January 14. He used drugs strictly to fight the process by which tumors form new blood vessels to feed themselves ("angiogenesis"). The drugs, given orally in small frequent doses, included Celebrex, thalidomide, and two other cancer drugs. The approach is called metronomic, low-dose or antiangiogenic chemotherapy.

Advice to cancer patients: Remember that some experimental treatments really do save lives.

Read another brain tumor survivor’s story.

Thanks to Denise Grady for her source article in today's NY Times.

The insurer had initially refused to pay: A liver transplant lawsuit

Nataline Sarkisyan was a very sick teenager. She had been diagnosed at 14 with leukemia. Her cancer went into remission after two years of chemotherapy, but it returned last summer.

The day before Thanksgiving, she received a bone marrow transplant from her brother. Unfortunately, a complication caused her liver to fail.

Her parents asked CIGNA, their insurer, to authorize a liver transplant. CIGNA initially refused to pay for it, saying it did not cover experimental or unproven treatments.

Four doctors at UCLA submitted a letter to CIGNA on December 11 that urged the insurer to reconsider, saying that in Nataline's case the liver transplant would be neither experimental nor unproven. They cited the survival rate in such cases.

The University of California at Los Angeles Medical Center told the family on Dec. 14 that a liver was available, if the family could pay a down payment of $75,000, in view of CIGNA's denial of authorization. The family couldn’t afford it.

On Thursday, Dec. 20, following a rally by 150 nurses and community members outside its office in suburban Los Angeles, CIGNA changed its decision. But it was too late; Nataline died a few hours later.

Nataline's father has retained a lawyer, Mark Geragos, to bring a lawsuit against the insurer, asserting the initial refusal of the liver transplant contributed to Nataline's death.

Advice: Check the customer satisfaction ranking of your insurer, and switch if their rankings are low.

Browse for related stories in the index at the very bottom of this page, or read a story about the affordability of a liver transplant.

Thanks to Alicia Chang for the source article in today's Boston Globe.