DIY Medicine

A medium-length article in The Scientist describes patients with fatal diseases taking their treatment into their own hands. Here’s what happened with lithium and ALS:

Humberto Macedo, an ALS patient in Brazil, started a Google Docs spreadsheet to track self-reported ALSFRS-R scores. And Karen Felzer, a research scientist on the US Geological Survey’s Earthquake Hazards team whose father had ALS, built a website to host the project. At 3 and 6 months, Felzer, who has a background in statistics (normally devoted to analyzing earthquake aftershocks), examined the data. Both times, she found no evidence that lithium slowed progression. By November 2008, when Felzer posted her second report on the project’s website, most patients had stopped taking the drug.

Drug companies don’t like the new movement:

Drug companies are understandably wary of any movement that could jeopardize their chances of success, including patient-initiated trials. Drug developers go to great lengths to control the variables in clinical trials, to optimize the dosing and the treatment window in order to reduce side effects while maximizing therapeutic gain, and to monitor patients’ health. If patients outside the clinical research system start taking experimental drugs on their own, the likelihood of something going wrong is greatly magnified. And if something does go wrong—something that may not have been caused by the drug at all—entire drug development programs could be shut down prematurely.

The author of the article, Jef Akst, was impressed enough to start a blog about the subject.

2 Replies to “DIY Medicine”

  1. Interesting article. It really illustrates the difference in thinking between a drug company and a terminally ill patient.

    Drug company (and medical profession in general) worry about what can go wrong – which could damage their reputation/financial status and don’t want to go forward unless they can control/eliminate that.

    Patient – sees the prospect of something that might go right, and is willing to risk poorer health or even earlier death to try it.

    These are two completely different value sets, and for the drug cos to tell the terminally ill patients not to do it because it *might* hurt them highlights this difference.

    The patient is willing to take a risk the drug companies are not – the drug co’s, FDA etc should not have the right to stop them.

  2. The drug companies and doctors are interested in the average, while the terminally ill patient decides he’s either content with this average (a couple of months of low-symptom living till death) OR the option of trying something totally different and gaining years (maybe, theoretically, even curing himself).

    If I understood Taleb correctly, this is an example of “the long tail”. Right, Seth?

    Seth: The term “the long tail” was used by Chris Anderson, not Taleb, and refers to something else. The situation you describe might be called misaligned incentives or simply different goals. The patient has different goals than the doctors and drug companies.

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