If you would have come earlier: A cancer misdiagnosis

National patient safety expert Dr. Peter Pronovost describes what got him started on his crusade:

My father died at age 50 of cancer. He had lymphoma. But he was diagnosed with leukemia. When I was a first-year medical student, I took him to one of our experts for a second opinion. The specialist said, "If you would have come earlier, you would have been eligible for a bone marrow transplant, but the cancer is too advanced now." The word "error" was never spoken. But it was crystal clear. I was devastated. I was angry at the clinicians and myself. I kept thinking, "Medicine has to do better than this."

Advice: Get a second opinion promptly upon receiving a crucial diagnosis.

Read a very different story about the need for a second opinion. Thanks to Claudia Dreifus for the source interview in the New York Times of March 9.

Just before his stem cell transplant: Insurers' recission of coverage

Peggy Raddatz, an Illinois resident, testified before a subcommiteee of the U.S. House of Representatives yesterday that Fortis Insurance Company attempted to drop her brother Otto from coverage just before he was to receive a stem cell transplant to treat his lymphoma. According to Peggy, the company sought to cancel her brother's insurance because it said he had failed to disclose that he had previously suffered gallstones and an aneurysm when he first signed up for his insurance policy.

But, Peggy said, her brother had never been informed of those conditions. They showed up only in a CT scan that was never revealed to him, she said.

Eventually, the company relented after they received weeks of her phonecalls, and pressure to do so from the Illinois Attorney General's office. Peggy said most policyholders who lose their insurance are not as lucky. Indeed, insurers have culled many thousands of such beneficiaries from their rolls.

You can see the brief video of her testimony here.

Do you want the option to choose coverage through the government instead of an insurer's coverage?

Advice: Call your Congressman and insist that the coming health care law include a public insurance option.

Read a story on why President Obama feels so strongly about insurance company denials. Thanks to Patrick Yoest for the source story today in CNN Money.com.

All patients should know their options: Lymphoma drugs Bexxar and Zevalin

Linda Stephens had late-stage non-Hodgkins lymphoma, a cancer of the immune system that attacked her white blood cells, and a grim prognosis. Chemotherapy proved both difficult and ineffective. Less than a year after her diagnosis, the disease was spreading, and had involved every lymph node in her body. Now, at age 58, she has been cancer-free for seven years. Betsy de Parry (cancer-free for five years) and Dan Wheeler (cancer-free for three years) have similar stories. All had received Bexxar or Zevalin, which are costly, rarely used drugs in a new class, called radioimmunotherapies.

Clinical trials to show whether the drugs extend patients’ survival rates are nearing completion. Early studies showed the drugs have significant advantages over Rituxan, the mainstay drug for these patients. When it reviewed the clinical trials for Zevalin in 2001, the FDA found that "as compared with the Rituxan therapy, Zevalin was associated with a superior overall response rate."

Linda, Dan and Betsy are among the lucky few who receive Bexxar or Zevalin: only one tenth of the patients who would be suitable candidates for these drugs actually receive them.

Financial incentives discourage their use. Infusions of chemotherapy, Rituxan, and other drugs form the primary source of income for most oncologists. But Medicare and private insurers do not pay the oncologists for prescribing Bexxar and Zevalin, since these drugs must be administered in hospitals.

Also, most oncologists outside academic hospitals treat many different cancers, and may not be familiar with these drugs, which are used specifically for certain kinds of lymphoma.

Betsy de Parry says, "It’s not that I believe that radioimmunotherapy is right for everybody. I just think that all patients should know their options."

Non-Hodgkins lymphoma is the fifth most common cancer in the U.S., with 60,000 new patients diagnosed each year. About 20,000 people could be suitable candidates for Bexxar and Zevalin.

Advice for lymphoma patients: Learn more from the Lymphoma Research Foundation. And keep an eye out for news of the completion of the clinical trials.

Read one of our lymphoma survivor stories, or read more from today’s New York Times article by Alex Berenson.