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Siegfried Schwarze – QandA

How has HIV affected your life and what motivated you to become an advocate?

When I found out that I was HIV+ I was still in university studying Microbiology. I was always interested in viruses but now even more so. After graduation, I started working at Merck as a sales rep. But in 1996 the chance came and I applied for the position as Medical Manager for Crixivan. In the four years in this position I came in contact with a lot of community activists and admired their vision. When I retired in 2000 due to HIV-related circumstances, I decided to „change sides“ and become a community advocate. People from a small NGO called „Projekt Information“ (after the idol of „Project Inform“ in the US) asked me to write for their bi-monthly magazine. Today, I run this organisation longer than any of my predecessors, I give lectures all over Germany and still have a lot to learn ;-)

What would an HIV cure mean to you and to your community?

That totally depends on how that cure would look like. Sterilizing? Functional? No meds anymore? Still uninfectious? Risks? Side effects? Loss of sickness-related benefits? So, actually more questions than answers so far…

What scientific and community engagement work excites you most about the DARE Collaboratory?

I really believe in “nothing about us without us“ and I think that patients’ perspective sometimes is more important than the raw data. So, I really appreciate the exchange with other activist and the researchers in the cure area and hope that this collaboration will prove very valuable.

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