There’s a nice review of Sharon Batt’s book Health Advocacy Inc. by Grazia De Michele, on Somatosphere. Batt chronicles changes in Canadian breast cancer patient advocacy organizations (PAOs) between the early 1990s and the late 2000s. She was a co-founder of one such organization in the 1990s, and uses her extensive knowledge of the terrain and the people involved to understand the changes over the following decades.
In Ghost-Managed Medicine I draw on one of Batt’s anecdotes. In 2007 the Canadian Breast Cancer Network sponsored a survey about the risk of relapse, finding that only one in ten women were aware of their risk of relapse after five years of treatment with tamoxifen, a treatment for some specific breast cancers. The Network produced a press release, an information fact sheet, and a slick video on YouTube. Batt recounts that the ‘professionalism of the package was striking and had all the hallmarks of a help-seeking ad’. Seen as an advertisement, it would have been precisely targeted, because the package was circulated through the Network’s members and contacts, who would have had reason to pay attention to a risk of relapse of breast cancer. The entire project was paid for by Novartis, which makes a drug specifically for follow-up therapy after five years of treatment with tamoxifen! This was the Network doing something within its mandate, by sharing useful information. At the same time, Novartis was spreading precisely the information it most cared about to its own target audience.