Patient Groups: Grassroots or Astroturf?

The New Scientist has an excellent article on the conflict of interest involving so-called “grassroots” patient organizations that receive drug company funding for support. I’d like to thank the reader of my site that provided me the link to the story. Long excerpts (with my emphasis) below.

"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.

Rather than grassroots, the word Rennie uses to describe such organisations is "astroturf". Originating in the black arts of politics and public relations, astroturfing is the practice of disguising an orchestrated campaign as a spontaneous upwelling of public opinion.

Other health specialists don't go as far, but they are still uneasy about the financial relationships between drug firms and prominent patient groups. "I think there are grounds to be concerned," says Joel Lexchin, who studies pharmaceutical policy at York University in Toronto, Canada. He and others point to instances in which representatives of patient groups, sometimes in close contact with corporate public relations teams, have spoken favourably about drugs at meetings or press conferences.

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So is the charge of astroturfing fair? How much money are patient groups typically taking from pharmaceutical and medical device firms, and does this affect their behaviour? To investigate, New Scientist conducted the largest survey to date of industry donations to patient groups based in the US - the biggest single market for drugs and medical devices. As well as taking a random sample, we identified groups associated with conditions for which companies have been accused of "disease-mongering" - encouraging an expansion of the boundaries of an illness in order to boost sales of a treatment for it (see "How the groups were selected", below). Though these allegations are unproven, we decided it was important to investigate whether any patient groups have received unusually large proportions of their funding from industry.

In each case, we tried to determine the percentage of a group's total funding that came from the pharmaceutical and medical device industry in the most recent year for which figures were available. This was not always easy, as US non-profit organisations are not required by law to disclose their donors' identities. Tax returns and annual reports provided some of the information, but in most cases, obtaining a figure required the group concerned to provide it voluntarily.

The extent of industry funding varied widely (see Chart, right). In some cases the cash amounts were enormous - more than $23 million in the case of the American Heart Association, the largest organisation studied, although this accounted for just 4 per cent of its total funding. Small proportions of funding may not be cause for concern, Lexchin says, unless they go toward activities like creating biased treatment information. "It depends how the money is used." Lexchin also believes there is a need for greater transparency about where such donations are coming from, so patients can evaluate for themselves the information the groups are providing.

In total, seven groups received 20 per cent or more of their funding from pharmaceutical and medical device companies, including all four linked to the conditions over which accusations of disease-mongering have been made.

One of these groups, the Depression and Bipolar Support Alliance, said it received more than half of its 2005 funding from industry. The group did not provide an exact percentage, but combined information from its annual report and tax return reveals that 77 per cent of its revenue for 2005 came from 15 major donors, 12 of which are drug or device companies.

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. Both drugs are intended to control the symptoms of RLS over long periods. While these symptoms can seriously disturb sleep, critics claim that their prevalence has been exaggerated by GSK and in media reports.

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. GSK is clear that Requip is indicated for moderate to severe RLS only, says company spokeswoman Holly Russell. "The main sense we get from patients is an enormous sense of relief," she adds. "Show me the scientific article that says that people who don't have the condition or people that have very mild RLS are flocking to take drugs," says Georgianna Bell, executive director of the RLS Foundation.

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By contrast, groups in our survey that received no industry funding seemed to be for diseases that drug companies have little opportunity to profit by. For example, the people supported by Faces, the National Craniofacial Association, are typically treated with surgery, while the Ehlers-Danlos National Foundation is for people with a disorder of the body's connective tissue for which there is no specific treatment. The Amyotrophic Lateral Sclerosis Association received just 0.6 per cent of its $16 million budget for 2005 from pharmaceutical companies. This neurodegenerative disease is typically fatal within four years of diagnosis, and there is only one drug approved by the US Food and Drug Administration to treat it. Aventis, which manufactures the drug, provided $10,000 to the association.

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.

Meanwhile, concerns about the safety of psychiatric drugs in children, which reached new heights in 2004, have hit the Child and Adolescent Bipolar Foundation hard. Its donations from industry fell from about 40 per cent of its total revenue in 2004 to 20 per cent in 2006. "Pharmaceutical companies are not as willing to support us because of increased scrutiny around psychiatric treatments in children," says Susan Resko, the foundation's executive director. As a consequence, she has had to lay off more than half of her staff.

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Information on the websites of some groups in our survey raises further questions. For example, the treatment section of the Depression and Bipolar Support Alliance's site was developed with an "educational grant" from Neuronetics, a company which gave at least $10,000 and possibly as much as $150,000 to the alliance in 2005. One page describes transcranial magnetic stimulation (TMS) and vagus nerve stimulation (VNS) which both aim to treat mood disorders by stimulating neural activity. Neuronetics makes equipment for TMS, which has not yet been approved as a treatment. Nevertheless, the site provides web links and telephone numbers for Neuronetics and Cyberonics, a VNS equipment maker that donated between $150,000 and $500,000 to the alliance in 2005."

Read the whole story here.

My View: I am certain that it nearly always starts innocuously. A group that wants to support people with condition X starts humbly, scraping scarce resources together in a truly grassroots effort. Then company Y notices that this group needs some money, and we all know what people, as individuals or groups, will often do for money. It is my belief that most of these patient groups truly believe they are not influenced by drug company funding, but when perusing their websites, it is hard to believe this is true. Influence can be completely subconscious. I’ll write more on the Depression and Bipolar Support Alliance soon. Link to another very good story on the Requip/Restless Legs issue here.