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To reach the small, but lucrative hemophilia market, some drug makers have tried an unusual and high-intensity promotional strategy — building lifetime relationships.

Companies start early by giving children toys and comic books. One sponsored summer camps and another offered grants for music and sports classes. Teens have been awarded college scholarships. Young adults and parents were offered jobs to advise families about treatment. In some cases, sales reps have been assigned to individual patients to ensure long-standing use of specific medicines.


Such moves exceed the usual sort of industry promotion aimed at consumers, and, in fact, more closely resemble the tactics used by the pharmaceutical industry to sway physician prescribing, according to a paper published Tuesday in PLOS Medicine. And the authors argued that the web of ties can foster a culture of dependency that may undermine effective decision-making and requires more regulatory oversight.

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  • If I had a child with hemophilia I would want by loyalty bought and paid for with a any company that manufactured safe synthetic clotting factors, which are expensive to make. Or perhaps to save money and avoid the appearance of being “bought off” we should return to the days of yesteryear where commercial clotting factors were obtained from the pooled plasma of paid donors, about half of whom were HIV positive.

  • Hemophilia is a rare condition, frequently not understood or treated properly except, for the most part, at the approximately 140 federally designated Hemophilia Treatment Centers (HTCs) in the United States. These HTCs are often understaffed and underfunded and/or under-supported by their parent institutions. With this in mind, is it exceptional that pharmaceutical manufacturers step in to fill a void and also market their products, especially when patients frequently need to be educated so they can advocate for their proper treatments when needed? This is a difficult ethical situation, although the excesses have been gradually reduced somewhat over the last few years.
    Note that there are also scholarships for people with other conditions, such as cancer, sickle cell disease, etc., administered through disease-based foundations, along with co-pay assistance programs, free trials/samples and quick-start programs, patient education booklets, etc., also. So, the question is: do pharmaceuticals approach patients with these and other chronic and/or high cost conditions like they do in Hemophilia/Bleeding Disorders? I think not, although there are increasing numbers of consumer conferences, for example, Brain Tumors, Multiple Myeloma, etc, and I am certain that pharmaceutical reps attend these to spread the word about their products to consumers.

    • Its nice to see a reply from someone familiar with hemophilia treatment and the hemophilia community. Because hemophilia treatment centers are underfunded and understaffed, much of the educational material and “extras” provided by pharmaceutical companies, as well as home health care companies, fills important gaps. When the educational materials are provided to hemophilia treatment centers to make available to their patients, when people with hemophilia can apply for scholarships or other assistance programs through a third entity that keeps their identity private, or when assistance is offered whether or not the person uses that companies medication — that can be very helpful. However, when these pharmaceutical companies contact hemophilia families directly, things get pretty potentially unethical, and certainly inappropriate and “sticky.”

    • Hi Josh,

      Thanks for the note. And I understand your point. I’m familiar with the reasons for, and reactions to, the marketing beyond what was noted in the PLOS paper. There are different perspectives, of course, on the extent to which the marketing is, nonetheless, appropriate. I highlighted what the researchers believe is problematic.

      That said, I’ve asked the lead researcher to consider responding directly, since it’s her name on the paper. Hopefully, she will reply.


    • Factor manufacturers are happy to fund anything the hemophilia community asks for. Whatever they spend is a bargain because it buys silence from the community on high factor prices, lack of comparative effectiveness research and other issues for which unconflicted advocates would be demanding action.

  • It may cost up to $1000/week/camper for these medical specialty camps although families are charged a fraction of the cost while the balance is subsidized by the national foundation. Being able to defray the costs and thus send more kids to camp by partnering with a pharmaceutical company- I don’t see a problem.

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