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Pharma Industry News Update: 24 February 2017 Previous Issue

How Patient Advocates Make Money from Pharma with the Help of Agents Who Take a Cut


Leanna Mullen has Gaucher's disease, a rare genetic disorder that is associated with a variety of debilitating symptoms, from lung disease to arthritis. Mullen, a New Jersey-based television producer in her late twenties, has built up a vast network in the patient advocacy community and has used her media platform to raise awareness of her disease. Several months ago, she was contacted by a research firm called BrandTrust regarding a survey into the mental health of patients with Gaucher's. She was told that the information would be delivered to a pharmaceutical company, but she declined to disclose the company to me after signing a non-disclosure agreement.

If Mullen could recruit a diverse set of patients to participate in the research, she would be paid about 80% of a $10,000 fee. "I had the connections, and was able to recruit almost my entire demographic within two or three days," she says. Mullen was able to reach out directly to patients in closed Facebook groups and private forums, which would have been off-limits to recruiters.

Bioethicists such as New York University's Arthur Caplan have some concerns... Caplan suggests that guidelines should be formulated to clarify how patients should disclose conflicts of interest, if they're getting paid. That's particularly important if they're being asked to recruit for a potentially risky clinical study.

More here...

Further Reading:

Pharma YouTube - Successful Use of Online Video to Support Patients


The Johnson & Johnson family of companies, which includes Janssen UK, have been the leaders in launching branded and unbranded YouTube channels. This podcast features two of the best examples of that.

Gary Monk was the person responsible for Janssen-Cilag's "Living with ADHD" YouTube site, which featured a video is entitled "ADHD: A day in the life by Janssen-Cilag Ltd."

Rob Halper was the person who single-handedly maintained the J&J Health Channel on YouTube, which is a non-branded site with the goal of presenting a better understanding of health and health care issues.

Listen here...

More podcasts:

Bill Would De-Stigmatize Vermont Docs and Allow Them to Partake of Pharma-Sponsored Free Ice Cream, Etc., at Medical Events


The Vermont Senate Health and Welfare Committee has endorsed a bill designed to allow doctors who go to conferences to eat meals paid for by pharmaceutical companies.

The bill would drop the law's provision that doctors who attend conferences and other large events be prohibited from consuming coffee, snacks, sit-down meals or buffets paid for by pharmaceutical companies.

"There would be signs placed outside of the dinner room at the conference that say ... 'Vermont practitioners not welcome,'" said Sen. Virginia Lyons, D-Chittenden, the lead sponsor of the bill.

More here...

It all started with ice cream:

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