The New Scientist’s recent survey describes how some patient groups get substantial funding from drug companies. The article begins:

They are supposed to be grassroots organisations representing the interests of people with serious diseases. But Drummond Rennie, professor of medicine at the University of California, San Francisco, and deputy editor of the Journal of the American Medical Association, believes that some patient groups are perilously close to becoming extensions of pharmaceutical companies’ marketing departments. “There’s a crisis here,” he contends.

The survey found seven groups received over 20% of their funding from pharmaceutical or medical device companies that sell treatments for the same disease. The Restless Legs Syndrome (RLS) Foundation, which was mentioned in comments to a prior post on this blog, was one of those seven. The New Scientist writes:

The Restless Legs Syndrome (RLS) Foundation, for instance, received more than $450,000 of its $1.4 million revenue in 2005 from GlaxoSmithKline (GSK) and nearly $178,000 from Boehringer Ingelheim. GSK’s drug Requip was approved for the syndrome in 2005, while Boehringer Ingelheim has a drug pending FDA approval.

. . .

The extent of industry funding of the RLS Foundation is “pretty incredible”, says one such critic, Steve Woloshin of Dartmouth Medical School in Hanover, New Hampshire. However, both the RLS Foundation and GSK reject accusations of disease-mongering.

. . .

The timing of donations also suggests a link to marketing interests, though donations to individual groups can vary from year to year for various reasons. Pfizer, for example, was a major donor to the RLS Foundation in 2003 and 2004. In July 2004 the firm announced that it had ceased developing its candidate RLS drug, and the following year donations to the patient group ceased.

Only two groups in the survey refused to take donations from drug or medical device companies–National Women’s Health Network and Breast Cancer Action. The article quotes a researcher who has looked at the differences between independent and drug company funded patient groups. She found that:

Organisations that accept pharmaceutical funding “tend to advocate for faster review and availability of drugs, greater insurance coverage, and they tend to see ‘direct-to-consumer’ advertising as a benefit to patients”, she claims. Groups that maintain financial independence, on the other hand, “emphasise safety over speed and are critical of direct-to-consumer advertising”, she says

In an editorial entitled “Drug Companies in Bed with Patient Groups”, the New Scientist points out the problems with patient groups receiving large amounts of drug company money:

[T]heir [patient groups] close relationship with industry can be worrying. Firstly, patients need information that is clear of bias, and this can be jeopardised when companies have a vested interest in getting groups to mention their products. Such tactics are a useful adjunct to more overt marketing strategies such as direct-to-consumer advertising, banned in Europe but common in the US. Secondly, patient advocates must feel able to criticise companies when appropriate – particularly over problems with drug safety.

The editorial argues that patient groups should insist that drug company funding should be unconditional, and used for things like supporting individual patients rather than limited only to providing information about treatment (which benefits the company). Finally, the editorial calls on patient groups to be transparent about their funding sources. Those two conditions seem to be pretty basic for any patient group that puts the interests of patients ahead of the interests of its drug company funders.