Pharma companies regularly use food, small gifts and financial opportunities to build relationships with doctors and in turn, they hope, boost sales of their drugs. But showering patients with those gifts and opportunities? It may sound unusual, but it happens in the hemophilia world--and not everyone is okay with it.

Younger patients with the clotting disorder receive grants, gifts, meals, services, consulting opportunities and plenty of special attention from pharma sales reps, according to a new paper published in PLOS Medicine--and plusses such as educational scholarships, awards, counseling and branded toys aren’t uncommon either.

Take Novo Nordisk, whose SevenSECURE program offers grants of up to $500 per child annually to pay for tutors, home schooling, or even activities such as swimming lessons, music classes and sports all the way through the end of high school. Older students can compete for grants of up to $7,000 to cover school expenses. Pfizer, for its part, offers 10 undergraduate scholarships worth $2,500 and 5 grad school scholarships for $4,000 to students with the condition.

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Others, including Baxalta and Bayer, offer personal, health or career guidance, the paper notes. Baxalta provides goal-setting partners and mentors through its NAVA program, while Bayer’s “Living Fit!” program is aimed at encouraging young hemophilia A sufferers to get active.

Patients and their family members are also recruited as ambassadors and consultants to serve within the hemophilia community, the paper says. Biogen, for one, boasts a community relations team comprising parents, advocates, friends, patients and others to serve for patients as a “partner, whether that means helping at chapter events, creating meaningful programs, or offering our experience to the community at large.”

And sales rep relationships with patients start during childhood, the authors point out. Before spinning off its hemophilia business with Baxalta, Baxter--the sponsor of Camp Superfly--put sales reps in some of the camp staff positions, allowing them to build relationships with young patients.

"Patients with hemophilia face significant clinical, social, and economic challenges that impede access to care. Sometimes those needs aren’t met through private or public insurance," a Novo spokesman told FiercePharmaMarketing in an emailed statement, noting that "interactions with patients and their caregivers, through our Consumer Council and other interactive platforms, help Novo Nordisk create programs that address unmet patient needs."

Shire, the new owner of Baxalta, added in a statement that it is "firmly committed to compliant patient relationship practices and have stringent ethical polices for how we engage with all members of the hemophilia community." Pfizer, Bayer and Biogen had not responded to requests for comment at press time.

The effort from pharma companies is no surprise, given the cost of treating the disease and the tiny patient population. The annual cost per patient with severe forms of the condition can top $300,000, and there are only 500,000 patients worldwide.

But “the effect of industry-generated friendship, community, scholarships, job offers, organizational support, and other gifts on patient perceptions of what are the best therapies should be assessed,” the authors argue, since in the hemophilia field, patients and their families are frequently involved in treatment decisions.

The way they see it, patients should make those decisions “in partnership with healthcare providers who have no conflicts of interest,” relying on non-industry-funded info sources--and drugmakers should stay away from funding patient groups or continuing medical education.

“Regulatory controls on industry interactions with patients should be considered,” too, they wrote.

But until those controls are in place, convincing drugmakers to tamp down their marketing tactics could be a tough sell--especially considering that the hemophilia arena is getting more and more competitive.

Biogen--which plans to spin off its hemophilia assets into a new company--ramped up pressure in 2014 when it entered the market with long-acting treatments for both hemophilia A and B, and others are looking to join the party, too. Swiss pharma giant Roche, currently working on a first-in-class antibody, is among them, along with Massachusetts’ Alnylam, which is focusing its efforts on gene therapies that could one day potentially cure the disease altogether.

- see the paper

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