Title:Ethical Questions Around Marketing to People With Hemophilia

Above: Fugh-Berman directs PharmedOut, a Georgetown University Medical Center project to advance evidence-based prescribing.

How do pharmaceutical companies reach people who have hemophilia? How do they interact with consumers? What drives a patient to choose one drug over another? When does a drug product’s promotion go too far?

Some of the pharmaceutical companies’ direct-toconsumer marketing methods are unprecedented and should be examined by regulators, say researchers in a recent study, who reviewed documents, including consumer-oriented materials, produced by the makers of hemophilia treatment products.

The study in the PLOS Medicine “Policy Forum,” published June 14, was written by Adriane Fugh-Berman, MD, director of Pharmed- Out, and two physicians who were graduate PharmedOut interns. 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.

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.

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

The authors note that people with hemophilia often make their own choices about which product to use, and that personal relationships are key in the companies’ marketing strategies. While it is common practice for physicians to serve as spokespersons for the pharmaceutical industry, in the case of hemophilia it is often taken a step further. Manufacturers of clotting factors enlist patients and their families to help market the product, recruiting them for employment, consulting roles, or advisory boards, the study says.

“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. “The companies make a great deal of money from their clients, and spend millions on individual promotion to foster brand loyalty.”

The U.S. regulates pharmaceutical industry marketing strategies that target physicians, note the authors. The study calls on regulators to review how pharmaceutical companies directly market to and interact with consumers. To move the purchase decision away from brand loyalty and towards evidence-based medicine, they also suggest that the federal government require research that has not been done before, comparing the benefit of different blood agents (which vary considerably in price) and different regimens.