A little article in JAMA (Journal of the American Medical Association) caught my attention yesterday:

Cancer Drug Costs

Citing the extremely high cost of many cancer drugs that produce only a marginal survival benefit, scientists from the National Institutes of Health (NIH)Clinical Center and the National Cancer Institute are urging the oncology community, regulators, drug makers, and the public to begin to set limits on the use or pricing of such drugs.

The scientists noted that 90% of the anticancer drugs of biologics approved by the US Food and Drug Administration (FDA) in the past 4 years cost more than $20,000 for a 12-week regimen, but many offer an additional survival benefit of only 2 months or less (Fojo T and Grady C. J Natl Cancer Inst. doi: 10.1093/jnci/djp 177 {published online ahead of print June 29, 2009}). For example, a study presented in 2008 found that adding cetuximab to other chemotherapies extended life by only 1.2 months at considerable cost: in the United States, 18 weeks of the drug cost $80,000, which translates to $800,000 for a single additional year of life for 1 patient. The researchers also point out that many studies that do demonstrate a small survival benefit do not take into account a patient's quality of life.

The authors recommend several measures to reign (sic) in such unsustainable spending on drugs with minimal benefits, including limiting price based on survival benefit, more stringent requirements for toxicity, discouraging the use of such drugs in patients with advanced cancer, and approving or prescribing drugs only for the subset of patients for whom they have been demonstrated to be effective.

--Health Agencies Update, JAMA, August 26,2009 vol 302, No. 8 p.838

My mother died of ovarian cancer in 2000. It had recurred. Her CA-125 marker was rising again. She walked bent over, because her abdomen hurt. She was only taking ibuprofen. She said, "I can have more chemotherapy or go be in a clinical trial."

I went with her to her cancer doctor. Dr. M. is kind and sweet. She said, "We can start another round of chemo."

My mother said, "Ok." My mother and father didn't ask anything else. They had a short social discussion with Dr. M. Dr. M. was perfectly willing to answer questions, but only answered if they asked.

At last I said, "My mother keeps losing weight. Do you think that taking a stronger medicine than ibuprofen would help her gain some weight?"

This was pure hooey. Narcotics do not help people gain weight. My mother was losing weight because the cancer was so big that it was stealing all the nutrition.

But Dr. M. understood. "Oh! We should give it a try. Here." She wrote a prescription for percocet, thank goodness. "Now you try this instead."

I followed Dr. M. out of the room. "My mother thinks that she could be in a clinical trial."

"No," said Dr. M. "The cancer is too advanced and she's been through too many treatments. But, we will give her chemo for as long as she wants."

We went home.

Think of the questions that neither my mother nor my father asked.

Will this prolong my survival?

How much will this prolong my survival?

How sick will it make me?

What does it cost?

If your mother was in my mother's shoes, would you recommend taking this?

My parents didn't ask and Dr. M. did not answer anything that they didn't ask. My mother did not want to know.

A week later, my mother said, "You know, that percoset is helping. I didn't realize how much I was really hurting."

She was walking more easily, though still bent over.

Within a few months she was admitted to the hospital with her intestines entirely blocked by cancer. We took her home, hospice for 5 1/2 weeks, before she died.

So what would you choose? If you had advanced cancer and were offered another chemotherapy, what if it is a choice between an average of 6 more weeks alive, but you might be sick as a dog, or stopping? Would you choose hospice? Would you ask if it was a potential cure versus palliative, slowing things down? Would you ask the questions? Would you say yes if you had insurance and no if it meant that your house would be sold to pay the $80,000? What would you do?

We are afraid to talk about death, about cost, about whether a treatment is worth it.

I ran into the son of a woman who died last year. She was my patient and I was really fond of her. I was very fond of him too.

"You know that you helped me more than anyone, with what you said."

"What did I say?" I say a lot of things.

"I told you that my mother was back in the hospital and that she'd pulled through another pneumonia. You said, I'm glad and then, someday she won't. I was shocked and then I thought, it's true, some day she won't. I went home and I changed what I was doing. We took time with the relatives and they came to visit and it was a very special time. She died about a year later."

"Thank you for telling me. I'm glad that it helped."

"Thank you."

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