This July, more than 18,000 activists, researchers, scientists and policymakers from 183 countries converged in the seaside city of Durban, South Africa, for the International AIDS Conference (AIDS 2016), where news of medical breakthroughs that make it possible to remove the virus from infected cells led some researchers to conclude that a cure may be only a few years away.
Then there’s the bad news: more than thirty years into the global fight against HIV/AIDS, the rate of infection is still going up, particularly in the developing world. Bill Gates, whose Bill & Melinda Gates Foundation has spent billions combating HIV, warned conference delegates that the chances of attaining the United Nations’ goal of “ending AIDS” by 2030 may be slipping away.
“If we only do as well as we have been doing, the number of people with HIV will go up even beyond its previous peak,” Gates said. “To start writing the story of the end of AIDS, new ways of thinking about treatment and prevention are essential.”
More than forty million people have died of AIDS-related illnesses since the start of the epidemic, and of the estimated thirty-seven million people who are HIV-positive, only a little more than half are aware of their status. The problem is not so much science as society—worldwide, the groups that are the most vulnerable to HIV/AIDS are marginalized because of their gender, sexual orientation, or social or economic class. Discriminatory laws and policies prevent many of those most at risk from accessing HIV prevention, treatment, and care.
“The human rights of people most at risk are consistently violated throughout the world,” said Chris
Beyrer, conference chair and president of the International AIDS Society. “Research presented at this conference will demonstrate that exclusion and discrimination help fuel the spread of HIV.”
Enter Benetech’s Human Rights Program, which has been working to build the capacity of LGBT rights organizations in Africa to document discriminatory laws and policies that keep sexual minorities from accessing HIV/AIDS care, prevention, and treatment. With support from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), working in consortium with HIVOS South Africa and Iranti-org, a queer media organization based in Johannesburg, Benetech has helped six national civil society organizations conduct field research in Malawi, Zambia, and Zimbabwe and use its free, highly-encrypted software, Martus, to securely store and manage their data.
At a breakout session hosted by Benetech in the cavernous Durban conference center, representatives of the six partner organizations delivered presentations on their ongoing research, which places special emphasis on the needs of those who are at greatest risk of HIV infection—especially transgender persons.
Stephanie W.R. Belemu, a researcher at Transbantu Association Zambia (TBZ), explained that transgender people are being systematically left out of the global response to HIV/AIDS.
“Many transgender people are frightened to go to clinics for HIV services because there is a lot of stigma, and they are not informed enough about HIV transmission and prevention,” Belemu said. “Instead of responding to their needs, the healthcare system is approaching them from the standpoint of prejudice.”
The latest data from UNAIDS shows that transgender women are forty-nine times more likely to be HIV-positive compared to the general population. Despite the elevated risk transgender people face, very few research projects have included them as target populations. According to a report by the International Reference Group on Transgender Women and HIV/AIDS (IRGT), sixty-one percent of countries reported to UNAIDS that their national AIDS strategies did not address transgender people.
Activist Humphrey Ndondo, executive director of the Sexual Rights Centre in Bulawayo, Zimbabwe, told the audience that systematic and proactive documentation of abuses is a way to bring policymakers around to addressing the risk that LGBTI communities face.
“Part of what we have done with this project is we have been able to document human rights violations and then speak to policymakers to ensure that messaging around tolerance is incorporated into training of healthcare workers,” Ndondo said. “When we engage, we have conversations that bring the hard data around who is affected and how are they affected in terms of negative attitudes and ways that healthcare institutions can have systemic discrimination toward LGBT persons. We hope to make a national effort by collaborating with other partners in the key population sector so we can speak with one voice and have a concerted effort toward really ending the epidemic.”
Over the course of the HIV/AIDS epidemic, too little has been done to change laws and practices that violate human rights, putting individuals at risk of infection and disease and impeding access to HIV information and services for those who need it most.
Benetech was proud to use the opportunity of AIDS 2016 to showcase the important work of partner organizations that are setting standards for new ways of addressing stigma and discrimination against LGBTI communities and new methods of documenting human rights violations that can help make tangible gains for those most in need.