Patients should have a voice in medical policy and treatment. ‘Grass-roots’ groups of patients are more likely to have that voice heard and to effect change if they are organised and well funded. Patient advocacy groups can therefore be more effective if they accept industry (pharma) funding. However, such groups can also serve the interests of the industry doing the funding. It is even better for the industry, however, if they organise the grass-roots patient advocacy group from the start; so-called ‘astroturfing’.
Astroturfing (from Astroturf: fake grass) as a term for pharma controlled patient advocacy groups was coined in 1985, but the idea dates back to Shakespeare’s Julius Caesar, in which Cassius writes fake letters from the public, calling for Brutus to assassinate Caesar. The topic of astroturfing is covered in this Wikipedia page.
Regarding medicine and medical industry, the recently reviewed Testing Treatments book touches on the subject (here).
This BMJ article covers some specific cases and shows how industry support for patient-advocate groups (let alone industry initiation of such groups) can distort their agenda away from patient advocacy, towards industry advocacy.
For a look at astroturfing in psychiatry, including funding for the Restless Legs Syndrome (RLS) Foundation by the company that makes the only approved drug to treat RLS, check this blog.
The interferon case is a good example in which the pharmaceutical company manufacturing interferon, through a PR company, urged patients to demand that the NHS supply the drug for Multiple Sclerosis, painting a picture that the drug was effective, but expensive, which diverted the argument from the real question, one regarding effectiveness.
And for a god look at astroturfing in US politics, you can’t go past Public Citizen’s 2007 report, with examples like Citizens for Better Medicare (a front for big pharma) and the “Save Our Species Alliance” representing the forestry industry’s attempt to gut the Endangered Species Act.
The bottom line
Industry support of patient-advocacy groups is a spectrum, ranging from unconditional, arms-length financial or administrative support, to initiation and control of the group. Where industry support exists, it should be provided without control over the activities of the group. I am not certain that this is possible, so I treat industry funding of such groups with scepticism.