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Patient Advocacy Groups and Drug Company Funding
Sidney M. Wolfe, M.D.
Are disease-specific patient advocacy groups affected by taking money from drug companies that make products to treat these diseases? Examples of groups that have received such funding include the American Diabetes Association, March of Dimes, Cystic Fibrosis Foundation, Leukemia and Lymphoma Society, National Kidney Foundation, National Osteoporosis Foundation, Y-Me National Breast Cancer Organization, National Alliance on Mental Illness and many others.
In a debate in the British Medical Journal, arguing there is nothing improper with such groups taking drug company money, a representative of the British Genetic Interest Group stated that “There is nothing inherently wrong with patient groups taking money from the drug industry provided that it does not put them under pressure to adopt a position that they would otherwise not choose to take up.” He goes on to say that “Patient groups are not naïve. They value their independence fiercely and are quite capable of spotting the strings that may be attached to funding – whatever the source.” Other sources reveal that this group is funded by, among others, GlaxoSmithKline, Merck, Novartis, Pfizer, Schering Plough, AstraZeneca, Genzyme Therapeutics and GE Healthcare.
Contrary to this claim of immunity from such influences and on the other side of this debate is Dr. Barbara Mintzes, a Canadian researcher who has investigated this issue thoroughly. She agrees that “Patient groups provide information, advice, and support; represent patients on governmental committees; and speak in the media on behalf of patients. They can be a voice for someone who faces pain, invasive procedures, isolation, disability, and at times discrimination and poor medical care.” But she then quotes the drug industry itself, from a publication entitled Pharmaceutical Executive, stating that:
“Product managers see advocacy groups as allies to help advance brand objectives, like increasing disease awareness, building demand for new treatments and helping facilitate FDA clearance of their drug.” Mintzes discusses the risks to patients of such drug company funding as including:
“Disguised promotion channeled through a seemingly neutral third party”; and
“Confusion between patients’ and sponsors’ interests in policy of patient groups.”
She concludes that such funding undermines the important independence of such groups and ends by stating: “A consumer group funded by telephone companies would not be trusted to judge the best mobile phone package, nor to be a public advocate on telecommunications policy. Is health less important?”