December 9, 2021
The Power of Advocacy: Lessons Learned from HIV Advocates
- Neil Bertelsen, HTAi Patient and Citizen Involvement Group
- Louise Binder, Health Policy Consultant, Save Your Skin Foundation
- Jim Howley, Senior Director and Hematology Lead, Patient Advocacy, Bristol Myers Squibb
In the 1980s, HIV was an unfamiliar and stigmatized disease that created panic in people who didn’t understand it. This fear of the unknown created an uphill battle for advocates who were working to find the best and most human treatment for HIV patients. During this session, we will discuss lessons that advocates learned as they found dignity for patients amid controversy, and how having a voice at the table, rather than shouting from the sidelines, led to significant change. The attendees in The Advocacy Exchange share a relentless passion for creating change in their areas. Join us for this courageous and authentic conversation, which will include opportunities for you to ask questions and/or share your experience(s).
Neil Bertelsen, HTAi Patient and Citizen Involvement Group
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, Health Policy Consultant, Save Your Skin Foundation
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, Senior Director and Hematology Lead, Patient Advocacy, Bristol Myers Squibb
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.