Founder, Body Positive Wellness Clinic and Program for Wellness Restoration; Houston, Texas
ACT UP was fueled by our desperation to take control of our futures even in dark days of death and turmoil. Without this "in your face" approach, many things that we now take for granted would have never happened or taken years to be achieved. But this desperation is now being replaced by some complacency and the need to lead a normal life.
Now that people are living longer and healthier in the United States, grassroots activism has decreased considerably as people reintegrate into a regular life. Many activists have gone back to school or to work. Some have started families. But some still remain out in the field advocating to eliminate ADAP waiting lists, exposing high drug pricing, working on prevention campaigns and outreach, and engaging researchers and industry in HIV cure research. Activism has moved out of the streets and is now happening within corporate meetings with pharmaceutical companies and the FDA.
I am concerned that treatment activism has not been able to attract younger people in the past 10 years. Some of us, old dinosaurs, are still working on issues that impact drug development and policy, but as we get older it is important to mentor younger people to follow our path and continue the work. The cure is on the horizon but still a long way out.
Social media has enabled us to reach out to others in a more visible way. I see more and more young people having HIV in their Facebook profiles when they mention their own condition or their involvement in fundraising activities.
Progress in GLBT rights in the past 10 years has impacted HIV activism and HIV activism fueled a lot of the GLBT rights movement two decades ago. But stigma is still prevalent even after 30 years of AIDS.
As we age with HIV, lack of access to health services and important monitoring will become more pressing and will require strong activism. Also, as cure research moves forward with its inherent risks, more of us will have to get involved in educating the community about studies that will be difficult to enroll, but needed to find a cure.
This illness still kills 2 million people a year and infection rates do not seem to slow down. There remains a lot of work ahead of us.