Praise then darkness, and creation unfinished

New Scientist has investigated drug industry funding for patient groups. These organizations are, at least in theory, founded and led by people who have a specific disease or condition, with the goal of providing information and support for their members and others with the same disease.

Unsurprisingly, pharmaceutical companies gave more money to patient groups devoted to diseases where there's an available medication, and less to those where the treatment is surgical, or where there is little or no effective treatment (including amyotrophic lateral sclerosis). Also, groups devoted to conditions where drug companies have been accused of "disease-mongering," convincing healthy people that they need medication, got a large percentage of their funds from companies selling that medication.

The groups that got a lot of industry funding denied that it biased their activities. NS's data suggest that, even if there's no explicit quid pro quo, the money is making a difference: the study compared two women's health organizations, one of which takes industry funding and one which makes a point of not doing so, and their statements about hormone replacement therapy.

Critics claim, however, that dependence on industry funding can unintentionally compromise an organisation's objectivity. "I think it's naive to think that you aren't being influenced," says Douglas Ball of Kuwait University, who has studied patient groups in many countries, including the US. Lexchin agrees: "Psychologists talk about the 'gift relationship'. The patient organisations are getting something and feel the need to repay that gift. Whether they are conscious of it or not is really irrelevant."

Sharon Batt of Dalhousie University in Halifax, Canada, has just begun to study patient group behaviour and funding after years working in breast cancer advocacy, where she noticed a general pattern. 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.

These groups don't seem to be the worst kind of astroturf: they aren't entirely industry-funded, and most of them, as far as I can tell, are in fact run by the patients involved. The warning here is largely for patients looking for unbiased information: just because a group says it's run by and for patients doesn't mean it isn't taking its information from the same drug industry reps who are buying your doctor lunch.