Hemophilia marketing tactics raise questions as market heats up

While there are plenty of drugs for hemophilia, new patients can be few and far between. To build their market share, some drugmakers and specialty pharmacies have begun hiring patients and their families to convince others to make a treatment switch--a practice that toes the ethical line and makes some hemophiliacs uncomfortable.

More and more, pharma companies and the dispensers of their pricey hemophilia meds are bringing on those close to the disease to gain access to other sufferers, The New York Times reports. "There are a lot more patients that work in industry now than ever before," Michelle Rice, VP for public policy and stakeholder relations at the National Hemophilia Foundation, told the newspaper.

The way companies see it, employing patients helps them understand the ins and outs of the disease, which can be difficult to manage. But some say the practice can be misleading, with those who act as friends in reality putting profit over health.

Indeed, some specialty pharmacies have already run into trouble with the law; the owners of one in Alabama were convicted of inflating Medicaid bills by paying hefty commissions to members of the hemophilia community to recruit patients, the NYT notes.

And the practice has alienated some hemophilia community members who want to avoid the sales pitches. In the Times article, one mother of a hemophiliac referred to her 18-year-old son--whose treatments ring up to more than $1 million a year--as a "cash cow," pointing out that he's "wanted by a lot of people."

Hemophiliacs have long been sought by drugmakers and pharmacies, who in the past took patients to dinner and showered them with gifts, according to the Times. But with marketing activities now more restricted by ethical guidelines in the industry, those looking to boost sales have gotten more creative.

And as the treatment landscape grows more crowded, the new patient-employment practices could continue to gain steam. Recently, newcomer Biogen ($BIIB) joined the field--previously dominated by companies such as Baxter (later spun off into Baxalta), Bayer and CSL--with a pair of long-acting therapies that require fewer infusions per week. Roche ($RHHBY) is looking to get into the mix, too, working now on a first-in-class antibody. And others still, such as Massachusetts-based Alnylam ($ALNY), are working on gene therapies that could one day potentially cure the disease altogether.

- read the NYT story (sub. req.)