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.
Thanks Carolyn, and I recommend you blog to my readers.ReplyDelete
Sorry, I recommend "your blog" to my readers.ReplyDelete
Having said that, to my readers, I also recommend that "you blog".
Hi Dr. Skeptic,ReplyDelete
Just spent the last 2 hours reading through your blog. Just great stuff!
Do you have any thoughts on inguinal hernia surgery?
My 11 year old boy is scheduled for repair in October and I've been trying to find some information about whether this is absolutely necessary for him. It does very mildly bother him now and then, and one 1 or two occasions it was uncomfortable enough to warrant icing, but overall, he's a normal active boy who hasn't really been slowed by it (he's continued karate, and we just returned from an active vacation with no ill effects).
Everything online indicates this will not heal on it's own accord, and must be repaired, but I don't feel like I'd be doing my duty as a dad if I didn't work through if it's really needed, or if there are other options.
It just seems so regular, routine and accepted, that I wonder if it's really that much of a slam dunk, but I just can't find anything online that even calls it into question. Do you know of any studies on it?
Hi Steve. Hernias are not my area. I think in adults they are overdone and I will put it on my list of things to look into, but in kids it is different. I can't offer advice about whether or not to proceed, but I can suggest that you ask around about some other surgeons and get a second or third opinion.Delete
not that moral relativity demonstrates worthiness, but not all independent grassroots organisations are without guile for example anti vaccination groupsReplyDelete
Fantastic article to read.ReplyDelete