The Power of Advocacy: Lessons Learned from HIV Advocates

Neil has over 25 years’ experience in bringing the patient voice to life for healthcare decision makers. Neil has been a patient advocate in the field of HIV since the early 90s, and is the past chair of HTAi’s patient & citizen involvement group where he continues to work with HTA bodies around the world on improvements to patient engagement in HTA. Neil is also a board member of Patient Focused Medicines Development, an international multi-stakeholder effort to bring patients into the heart of medicine research and development. Neil regularly works with patient groups, healthcare decision-makers and the industry to collectively develop approaches that benefit patients. 

Louise Binder is a lawyer and health advocate who has been involved in informing the development of health policy and systemic treatment access practices from the patient perspective since the early 1990’s subsequent to her own HIV diagnosis. She co-founded the Canadian Treatment Action Council (CTAC) in 1996. Louise began similar work in the cancer area and is presently a Health Policy Consultation with the Save Your Skin Foundation. She has been recognized by many organizations for her work, including receiving an Honorary Doctorate of Laws from her alma mater, Queen’s Law School; the Order of Ontario from the Province of Ontario; and two Queen Elizabeth II medals.

Jim Howley is one of the original Advocacy professionals in the industry beginning during the early years of HIV joining industry after being an active member of ACT Up and realizing the power of collaboration between Advocates and Industry.

After joining Abbott he grew the team to 140+ advocacy members worldwide and watched advocacy become an integral enterprise within industry bringing the patient voice and expert advocate insights into drug development and driving access together for patients worldwide.

Jim has been with BMS for almost 2 years becoming a member of Cathy Traz’s team during the height of the pandemic making his way with his partner, dog and cat across the country in a 19 foot camping trailer to settle in their home in Yardley, PA.

His achievement during his career span from the advocacy support in the launch of Humira, working with Hep C advocates to allow placebo controlled phase 3 trials allowing approval of these curative compounds at least three years sooner than planned.  He now proudly leads the Hematology Patient Advocacy Team with an excellent set of advocacy directors.

Jim’s full-time belief is that the harder one works, the luckier one becomes.  That is evident in his life-long training in martial arts and over 5 Ironman Triathlons completed.

He lives with his partner Ben, two dogs – Romeo and Hamlet and two cats – Puck and iago.