Twenty-Plus Positive Years: An AIDS Survivor Dialogue in Melbourne
An afternoon session, titled “Twenty Plus Positive Dialogues: People Who Have Lived with HIV for 20 Years or More,” on July 22 at the International AIDS Conference Global Village featured long-term AIDS survivors and high-level U.S. and global AIDS policymakers, and ended up less a debate and more about stories told.
Clearly a first foray into the larger global dialogue about long-term survivors, it was good to see some recognition at a major AIDS meeting—despite the fact that it was not well highlighted and was essentially off the beaten conference track. Perhaps most telling for long-term survivors at the conference was that the director of UNAIDS, Michel Sidibé, and the executive director of the Global Fund to Fight AIDS, Tuberculosis and Malaria, Mark Dybul, were both scheduled to appear but sent substitutes in their places.
Suzette Moses-Burton, executive director of the Global Network of People Living with HIV, was the moderator and firebrand of the panel. After the trauma of being told upon diagnosis that she only had two years to live, she is now a long-term survivor and global AIDS activist and leader. Politely yet emotionally challenging policy panelists, she told a story of the burnout many veteran AIDS activists have expressed. She spoke of being tired of continuously having to demand a place at the table, being weary of stigma and discrimination, and of having to justify her presence as a woman of color living with HIV. She pleaded that the policymakers must end their rhetoric and help us all to speak for those who do not have the voice to effect change.
Other long-term survivor panelists included John Rock, a 70-year-old gay man from Australia; Stephen Watiti, a 61-year-old Ugandan medical doctor; and L. Mbulo, a Zambian 23-year-old mother born with HIV. Each told dramatic stories from their past, including when they first found out they were HIV positive, their life struggles, and their somewhat incredible survival. They spoke of their will as long-term survivors to become advocates for their families, help people with HIV lead healthy and productive lives today, and work in communities to prevent new infections. They have survived through tremendous odds with compounding medical issues, community resistance, and lack of services and care. They all pleaded for recognition and action by local governments, communities, and medical institutions.
The global and U.S. policymakers on the panel—Mbulawa Mugabe from UNAIDS, Marjike Wijnroks from the Global Fund, and U.S. Global AIDS Coordinator Deborah Birx—all said they needed to do more. But compared to the survivor stories, their responses sounded like rhetoric. Birx stated that policymakers needed to hear from advocates, as has happened in the past. Her concern was that advocates today have become too quiet.
At this panel it became clear that we are truly in a new era of the HIV epidemic. After 33 years, many AIDS survivors are aging, and globally a new set of priorities needs to be put in place to take care of their medical, psychosocial, and practical needs. The life experiences of the long-term survivors on the panel present key “lessons learned” for HIV treatment, care, and services: start antiretroviral therapy early, help people living with HIV/AIDS maintain employment, ensure access to more effective and tolerable treatment regimens, and respond quickly to evidence of drug resistance to prevent disease progression.
Another lesson learned? Long-term survivors need to demand a place at the table, raising their voices in order to be heard both locally and internationally. The issues are complex and broad, but as more people age thanks to effective antiretroviral therapy, there must be a strategy in place before the issue becomes a crisis.
Matt Sharp is a Person with AIDS, longtime HIV treatment advocate, and writer. He is a co-founder of Let’s Kick ASS, a grassroots organization dedicated to honoring the experiences of long-term survivors of the HIV/AIDS epidemic and advocating for their health and well-being today.