Direct-to-consumer marketing to people with hemophilia

The PLOS Medicine "Policy Forum," published June 14, was written by Adriane Fugh-Berman, director of PharmedOut, and two former graduate PharmedOut interns (who are now physicians). PharmedOut is a Georgetown University Medical Center project involving physicians, researchers, students and other volunteers who promote evidence-based prescribing and educate health care professionals about pharmaceutical marketing practices.

Marketing directly to people with hemophilia, the trio reports, begins when patients are young -- through camps, school scholarships, internships, awards and career counseling -- and continues into adulthood with gifts, grants and jobs.

They say this strategy is effective because "[People with hemophilia] often make their own decisions about what product they use, which is acknowledged by factor manufacturers," the authors write.

Fugh-Berman, an associate professor at Georgetown University Medical Center, and co-authors Phillip Kucab, MD, a resident at Detroit Medical Center, and Katelyn Dow Stepanyan, MD, a resident at UCLA, say the marketing takes place against a background where optimal strategies for hemophilia treatment and prophylactic regimens remain uncertain.

The authors say personal relationships are a key factor in the marketing strategies. They say it is common practice for physicians to serve as spokesperson for pharmaceutical industry, however, "In hemophilia.... patients and their families are recruited by factor manufacturers for employment, consulting roles, or advisory boards," they write.

"We know companies focus promotional efforts on people with hemophilia because patients specifically tell their physicians which products they want to use," Fugh-Berman says. "This one-on-one marketing is extraordinary and has never before has been documented. These companies make a great deal of money from their clients, and spend millions on individual promotion to foster brand loyalty."

Demonstrating the costs involved, the authors compare the sales of a best selling drug, Lipitor, to hemophilia products. In 2011, the international market for hemophilia products was $8.5 billion, compared to $12.5 billion for Lipitor, a statin used to treat high cholesterol. The difference, Fugh-Berman says, is that there are about 500,000 people worldwide with hemophilia (20,000 in the U.S.) compared to millions of individuals who use Lipitor.

The authors call on regulators to review how pharmaceutical companies directly market to and interact with consumers -- pointing out that the U.S. regulates pharmaceutical industry marketing strategies that target physicians.

They also suggest that the federal government should require comparative research on the benefit of different blood agents (which vary considerably in price) and different regimens-- none of this research has been done, they add.