An emailer forwarded me a copy of an article in The New Republic by Ezekiel J. Emanuel, “a bioethicist and oncologist.” Emanuel argues against a recent DC Circuit Court ruling on a suit brought by a group called the Abigail Alliance. The ruling gives dying patients access to experimental drugs after they have passed some minimum safety tests but before they have been proven effective.
It would make it much harder to get people to enroll in research studies and get the data necessary to show whether a drug really was effective or not. Why should people enroll in a randomized, controlled study–where they could be put in the group receiving only conventional treatment–when they could just get their insurance to pay for whatever drug they thought was best?
…Expanded access would also rob the rest of us who may never need a cancer treatment. Individuals and society in general are struggling to pay the nation’s $150 billion-plus drug bill. And that is for medications proven to work. Now add the requirement that insurance companies pay for drugs we don’t know work, and you have a formula for financial disaster. Costs would skyrocket as we pay billions through our insurance premiums and Medicare taxes for worthless drugs.
I agree that it would be wrong to force insurance companies to cover unproven medications–otherwise, there would be no reason to stop individuals from choosing their preferred method of treatment–but the relevant alternative to these patients is not participating in randomized trials. The relevant alternative is death.
Dr. Emanuel describes his approach in a similar case:
Getting Virginia another experimental drug was not going to stop her breast cancer from growing and eventually killing her. I gently explained to her that investing all her energy chasing after another unproven drug was not going to help her and her family. Virginia was disappointed and refused to consider hospice, because she saw it as giving up. Holding her hand, I talked to her about spending time with her husband and daughters and making a videotape for her future grandchildren. We also discussed getting visiting nurses to come to her house. I saw her once more in my office. She was more accepting and found at least some of the activities meaningful. Because of her failing liver, less than three months later, she lapsed into a coma and died with her family present.
If I decide that I want to fight rather than go down graciously with a terminal illness, I will look for a doctor who is not a bioethicist. I found this article so chilling that it leaves me nearly speechless.