"At the time, we actually liked it. This nice man came to our house, had dinner with us," Kucab said. "It was kind of a nice relationship in a way because it was very personal. So when we used to order medication, we'd call up this nice person on the phone — 'How are the boys doing?' It was like a friend, almost."

Kucab, today a physician starting residency at Detroit Medical Center, remembers big baskets of cheese and crackers arriving at Christmas — a thank-you for their business. He remembers thinking it was kind of cool.

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Today, he has a more cynical take. Hemophilia patients are lucrative customers for pharmaceutical companies and the specialty pharmacies that act as middlemen and take a cut of the treatment cost. The annual median costs for treating one type of the disease, Hemophilia A, is $325,780, according to one study. Kucab said that the invoice costs for his own medicines each year add up to nearly half a million dollars.

In a striking new paper published in the journal PLOS Medicine, Kucab and colleagues detail the lengths to which drug companies do outreach directly to patients with hemophilia — gifts, assistance in paying for drugs, internships, college scholarships, apps where they can track their drug infusions and mentors. Kucab is a paid adviser to Bayer HealthCare, one of the companies that manufactures "factor," the missing protein that is administered as an injection.

Most people are familiar with direct-to-consumer advertising of prescription drugs, which is regulated. We've all seen television spots with a hurried narration of side effects while smiling patients exude wellness from the TV screen. And there has been increasing attention and scrutiny of the payments and gifts that drug companies make to doctors.

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But the new paper shows how complex and deep the relationship between patients and companies can be, in ways that may appear mutually beneficial on the surface but may mask an effort to create customer loyalty or sell pricier drugs for a rare disease in which each customer — who will need treatment over a lifetime — can be extremely valuable.

"I keep saying to patients and families: Pharmaceutical companies, they do marketing. They don’t do education," Kucab said. "It seems like education, but it’s all done under a marketing impetus."

Building ties to the patient community

Many of the tactics described in the article are old hat for pharmaceutical companies: The researchers note that drug companies give to patient advocacy organizations, for example, or provide a co-pay card or financial assistance to defray the cost of the drugs for individual patients. These are common practices that often come under scrutiny.

But it also details other things drug companies offer to develop relationships with patients, such as grants to support swimming lessons or music classes for families with hemophilia. The researchers obtained a coloring book for children made for the drug company Novo Nordisk titled "Summer Fun With Jake and Alex: An Activity Book for Kids With Inhibitors." Inhibitors are immune responses that patients can develop that stop the drugs from working.

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There are college scholarships for people with the disease at multiple companies and paid internships, such as "Bayer Leadership U," which promises to "to help prepare future leaders in the hemophilia community."

"This is what pharmaceutical companies do with doctors. You identify the opinion leaders and you throw money at them; it’s called consulting fees, they invite you to advisory boards. In this case, it’s being done with patients," said Adriane Fugh-Berman, director of PharmedOut, a research and education project focused on pharmaceutical marketing at Georgetown University Medical Center. She also serves as a paid expert witness in legal cases involving pharmaceutical marketing.

"Patients who are opinion leaders in the community are sought after for various leadership roles and internships and all kinds of things," Fugh-Berman added.

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A spokeswoman for Bayer said that for two decades the company has been committed to supporting people with an overwhelming disease.

“We continue to work closely with all stakeholders to understand the needs of patients, and we are proud to have supported a variety of valuable programs, including those that encourage people with hemophilia to become community leaders, to be more active physically, and that support research and education," spokeswoman Rose Talarico wrote in an email. "Bayer adheres to a strict code of conduct that governs all interactions with patients, healthcare providers, payers and other external parties."

A Novo Nordisk spokesman said that the coloring book was requested by its Consumer Council, a group of patients and caregivers paid for their time. Its SevenSecure program provided grants for things such as music lessons or tutoring for children and money to support learning new skills for adults. That program was not limited to patients who take Novo Nordisk drugs, according to Ken Inchausti, a spokesman for the company, and was administered by an outside organization.

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"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," Inchausti said in an email.

The clinical repercussions

The tricky thing about hemophilia treatments is that while there has been an explosion of options, little comparative data exists on which ones are superior. This worries physicians, because it means patients may be persuaded to try something that's more expensive but not proven to be more beneficial than a cheaper alternative. The way benefits are talked about at dinners thrown by drug companies for patients may also fail to give the full limitations of a study.

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Kucab notes, for example, that within the past two years he attended a dinner where a physician who was paid by the drug company gave a presentation that emphasized a benefit of the treatment without explaining a major limitation of the trial.

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"I think that the article shines a light on one dimension of pharmaceutical marketing that’s often neglected, and essentially it gives direct-to-consumer advertising a whole new meaning," said Caleb Alexander, an associate professor of epidemiology at Johns Hopkins Bloomberg School of Public Health who was not involved in the research. "It’s hard to demonstrate that these promotional practices are overtly deleterious for patients, and there’s nothing frankly illegal that was described, to my knowledge. But I think many people are left with an uneasy feeling. At least I'm left with that feeling."

The relationships between companies and patients that go beyond typical advertising can be the most pernicious, according to Ellis Neufeld, medical director of the Boston Hemophilia Center.

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