Tuesday, January 27, 2009

A Pioneer Passes

This article also appears in odwyerpr.com.

Martin Delaney, HIV/AIDS Activist, Taught Us Much About Communications
He was 63 and was not HIV positive. It was liver cancer that killed him.

Martin Delaney was the founder of Project Inform, the San Francisco-based organization dedicated to providing “information, inspiration and advocacy for people living with HIV/AIDS.” Marty threw himself into this public health crisis not because he was infected – he didn’t want to sit on the sidelines while his friends were dying. His organization and others, like ACT UP and GMHC, changed the way we viewed HIV/AIDS and much more.

We met not too long after Project Inform was founded. I was in the Public Policy and Communications department at Hoffmann-La Roche and he was on the other side of the table. With anti-retroviral drugs in the pipeline, seeing the emerging influence of AIDS activist groups (and the break-ins and boycotts affecting Burroughs Wellcome, manufacturer of Retrovir®/AZT), and imagining the potential benefits of hearing the patients’ point of view, I pressed for engagement. I remember quoting Lincoln to my management: “As our case is new, so we must think anew, and act anew.”

There was no playbook. Pharmaceutical companies didn’t interact with consumers. The Company would inform the “learned intermediary” – the physician – and he or she would communicate with the patient. Marty helped to bury that dogma and enhanced the dialogue between all of the key stakeholders. The industry and the FDA grappled for years over ways to expedite the review and approval of drugs for serious or life-threatening diseases. Marty helped to change policy, and many thousands of patients were able to gain early access and benefit from new therapies. Information about new treatments, managing side effects, insurance coverage and the availability of clinical trials was largely uncoordinated. Marty helped to launch a well-regarded newsletter, town hall-style meetings and an AIDS treatment hotline.

Interacting with Marty helped me to learn a key lesson: the importance of finding the common ground. The world was changing. The normal course of business – the normal course of life – was disrupted. We, the industry, and the patient community approached our goals from different directions using different strategies and tactics. But much of what we all sought was the same. Our constituency was their constituency and everyone wanted new medications on the market as soon as possible. The two “sides,” jointly, worked to expand drug access, enroll patients into clinical trials, and renew R&D tax credits and reauthorize the Orphan Drug Act.

It wasn’t always pretty. There were bumps in the road but at least we were on the road together, held there by mutual interest and mutual respect.

His lessons went beyond the HIV/AIDS community. I remember attending a meeting at PhRMA (then known as PMA) headquarters in Washington, DC. Expecting to see representatives from the AIDS advocacy organizations, the room included members of some just formed cancer patient groups. They were brought along to learn the ways of the pioneering AIDS organizations. It was brilliant.

Marty was dogged, built and expanded relationships, leveraged his network and communicated in new ways all with, what I observed as, a firm but calm approach. His contributions were many and should be remembered.

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