The New Scientist has an important article about the concerns â€śthat some patient groups are perilously close to becoming extensions of pharmaceutical companies' marketing departments.â€?
The term â€śastroturfingâ€? is used for fake grassroots campaigns created by PR professionals for special interests, spawning supposedly spontaneous upheaval of public opinion. In the case of drugs promoted by patient advocacy groups, thereâ€™s a lot of money and misinformation at stake.
The New Scientist says it â€śconducted the largest survey to date of industry donations to patient groups based in the US - the biggest single market for drugs and medical devices. â€¦ We selected 20 US patient groups operating on a national level with annual revenues of more than $100,000, plus five with revenues exceeding $10 million, pulling them at random from the GuideStar database, which provides information on US non-profit organisations.
In addition, we identified four further groups, again with annual revenues exceeding $100,000, associated with bipolar disorder, restless legs syndrome and attention deficit hyperactivity disorder. These conditions were highlighted in April by the journal PLoS Medicine as being susceptible to "disease-mongering" by the pharmaceutical industry.
Just two groups identified in New Scientist's survey - the National Women's Health Network (NWHN) and Breast Cancer Action - refuse to accept donations from pharmaceutical or medical device companies. "We want women to know that when they come to us, they are getting independent information," says Amy Allina, the network's programme director. "We think of ourselves as virtuous, but poor."
One researcher, a breast cancer survivor, concludes: "There is a tendency not to want to criticise the motives of the patient groups, because a lot of them are made up of people who are pretty seriously sick.â€? She and others say that patient advocacy groups must be more transparent so that patients can make informed judgements about whom they can really trust.