Drugmakers contribute $50 million each year to the Leukemia and Lymphoma Society, more than a sixth of the group’s overall funding. Colon Cancer Alliance receives more than half of its funding—more than $1 million a year—from industry.1
PhRMA, the pharmaceutical industry’s lobby, asserts that drugmakers have a “natural alliance” with patient advocacy groups. But several experts who spoke with Cancer Therapy Advisor were blunt in their assessments of potential problems inherent to industry funding for patient groups.
“Patient advocacy groups present themselves as representing the voices of suffering individuals whose sole interest is to get better,” said Michael A. Carome, MD, who directs the Public Citizen’s Health Research Group in Washington, D.C. “When these groups rely on funding from pharmaceutical corporations, however, they should not be viewed as independent advocates acting solely in the best interests of the patients they purport to represent. Too often, industry-funded patient advocacy groups adopt positions that are more aligned with industry’s financial interests rather than patients’ interests.”
That can happen when a patient advocacy organization’s “secondary interest” of maintaining industry support “poses a risk of unduly influencing its primary mission of advocating on behalf of its constituents,” said Matthew McCoy, PhD, an expert on patient advocacy organizations at the department of medical ethics and health policy, Perelman School of Medicine, at the University of Pennsylvania in Philadelphia.
A conflict of interest exists even when there is merely a risk of such influence—not only in cases of actual or demonstrable influence, Dr McCoy emphasized to Cancer Therapy Advisor.
For example, conflicted patient advocacy groups might advocate for U.S. Food and Drug Administration (FDA) approval of an investigational drug despite evidence of risk to patients, or a poor therapeutic benefit-to-risk ratio, Dr McCoy noted.
“Most people in patient advocacy groups are good people who want to do the right thing,” said Professor Marc-André Gagnon, of Carleton University in Ottawa, Canada. But funding of patient groups can become “a way for drug companies to capture civil society, basically, creating an echo chamber when they seek higher prices,” he said. “The logic of conflict of interest is not about buying somebody’s voice to make him say a message they wouldn’t otherwise say. Yes, you have some ‘astro-turf’ organizations set up by drug companies, but they tend to be the exceptions. The point is patient groups have a specific agenda, and there are some for whom it’s very important to secure better access to drugs for patients—and for insurers to reimburse whatever the price.”
The strategy is to fund the message you want repeated, Dr Gagnon believes. With better industry funding, the voices of groups “pushing for government to accept higher prices in the name of the patient” become the dominant voices, he said.
“You rarely hear about patient groups that focus on adverse effects of drugs, for example,” Dr Gagnon said. “A lot of those groups exist, but they get no drug company funding and their voices are marginalized, even though these are important issues.”