Last October, the magazine New Scientist published a survey gauging the dependence of randomly selected U.S. patients' groups on drug manufacturers. Combing through the tax returns, annual reports and voluntary disclosures of 29 nonprofit patient-advocacy groups, the publication found that most accepted financial backing by companies developing or producing drugs used to treat patients supported by the group. In some groups, such as the American Heart Assn., the drug makers' financial backing was huge ($23 million in 2005) but represented a small portion (4%) of revenue. For seven groups, donations from interested drug companies represented more than one-fifth of revenue. The Depression and Bipolar Support Alliance said it received more than half of its 2005 funding from the drug industry, and the Colorectal Cancer Coalition got 81% of its funding from drug makers.
New Scientist's probe found that some donations appeared directly tied to marketing interests. In 2003 and 2004, when the drug giant Pfizer was developing a drug to treat restless leg syndrome, it was a major donor to the Restless Legs Syndrome Foundation. But in 2005, after Pfizer announced it had abandoned development of the potential drug, its donations to the patient group dried up.
Many of the best-known groups, including the Alzheimer's Assn., American Cancer Society and American Diabetes Assn., typically have a board of physicians who vet the scientific accuracy of the information they provide to patients. And most solicit "unrestricted" grants that allow them freedom to use the drug makers' donations as they see fit.
But even large groups often provide a gateway to the products of corporate sponsors, say those who have surveyed them. Many list FDA-approved medicines available to treat the disorder that is their focus and provide Web links that lead patients directly to marketing sites. And many offer their corporate sponsors access to their members, a potential gold mine of direct-marketing opportunity.
The corporate-donor pitch posted on the website of the national infertility patient group, Resolve, is typical of many patient groups. "Whether you become a site sponsor, a resource partner, or a sponsor of Resolve's chats, [the group's website] is the ideal place for your company to market its products and services to thousands of men and women across the country," the appeal states. Among the benefits the group lists for becoming a member of the group's "Corporate Council" are access to data on utilization of the group's programs and services and "the opportunity to establish topics and sponsor special briefings for patients, the medical community and public policy makers." Serono and Organon, both makers of prescription medication used to treat infertility, are among the group's corporate sponsors.
Patient groups also mobilize patients -- sometimes armies of them -- to push for coverage of prescription drugs by insurance companies and states' Medicare and Medicaid agencies. To pharmaceutical companies, this can make or break the market prospects for a new drug because 80 million Americans -- among them, the heaviest prescription-drug users -- receive healthcare coverage through Medicare and Medicaid, and roughly 155 million have prescription drug coverage through private insurance companies.
Strength in numbers
When insurers balk at reimbursing patients for new prescription medications, these groups typically swing into action, rallying sufferers to appear before public and consumer panels, contact lawmakers, and provide media outlets a human face to attach to a cause. Infertility patients mobilized by Resolve, for instance, have been extremely effective in extending states' insurance coverage of infertility treatments. Groups such as the Depression and Bipolar Support Alliance have fielded experts and patients who have done the same for psychiatric conditions. And a wide range of patient groups, most with substantial backing from the makers of erectile dysfunction drugs, have mounted successful campaigns to get wary insurers to cover drugs such as Levitra, Viagra and Cialis.