Youth to Durban: “Listen!”

Last week in Durban, at the International Conference on AIDS, young people stole the show. This was the second Durban conference; the first was 16 years ago, in 2000. Back then, a major conference topic was commitment: mobilizing leaders around the world to commit seriously to addressing the spread of HIV in their countries. Looking back on our progress since 2000, the HIV and AIDS community can say with pride that we have come a long way. Seventeen million people have access to treatment. We have eliminated mother-to-child transmission in Cuba, Belarus, Armenia, Moldova and Thailand.

And 36.7 million people around the world are living with HIV.

Yet, in his closing remarks at the 2000 Conference, former South African President, the late Nelson Mandela, noted, “Earlier this week we were shocked to learn that within South Africa, one in two, that is half, of our young people will die of AIDS. The most frightening thing is that all of these infections which statistics tell us about, and the attendant human suffering, could have been, can be, prevented.”

Mandela’s alarm at the potential impact of HIV on youth was justified; and his words echoed as we returned to Durban 16 years later: Youth are disproportionately affected, and we need to do something about it. Data from PEPFAR’s DREAMS Initiative show that girls and young women account for 71 percent of new HIV infections among adolescents in sub-Saharan Africa. Throughout the week, as I drifted between scientific sessions, The Global Village (the community and youth space open to the public), and keynote speeches by Ambassador Birx, Charlize Theron, Prince Harry, and Elton John, I heard the same question over and over again: What do we need to do to effectively reach youth?

The answers were there, if you listened—during youth performances in the Global Village and conversations held in networking zones; and in the DREAMS sessions, where young people shared their stories:

“Listen to us.

Stop blaming us.

It is not our fault if we do not come to you. You need to come to us.”

This last point was highlighted in a small Global Village session hosted by AIDSFree partner, IMA World Health. One of the speakers, JSI’s Center for HIV and Infectious Diseases Director Andrew Fullem, reminded the audience that creating programs that would actually help young people required listening to them. “Ask young people what [kind of services] they want, then provide those where they want them, when they want them.”

I was particularly floored by the young speakers in a quiet, sparsely attended session on patient engagement on the last day of the conference. The first speaker, a young woman from Uganda, called the conference organizers out on their choice of name for the session. “I am fine with you calling me a person living with HIV. By calling me a patient, you are already missing the point. You are treating me like I am sick, instead of working WITH me to find a solution.”

The second speaker, a young trans woman from Belize, shared a story that played out during the conference itself. She had fallen on the first day, and broke her arm so badly that she required surgery. The first hospital she was transported to did not know what to do with her. Her country papers—which she is legally not allowed to change—still identify her as a man. For nine hours, she waited in excruciating pain, while nurses and doctors bustled around wondering what to do with the “patient”— but never talking to her, never touching her, and never treating her. Eventually she was transported to a second hospital, where she had a radically different experience. The first nurse she encountered listened to her story, and brought doctors and nurses to her, explaining to them, “This is a PERSON who has broken her arm and needs your help.” Being treated with compassion and having someone listen to her, this young woman said, transformed her experience with the health system, and created a relationship in which she and her care team worked together to treat her injury effectively.

Young people remain profoundly vulnerable to HIV. We can treat them—but we need to reach them. And when we reach them, we must listen to what they have to say.

In the opening comments to the week, actress Charlize Theron reminded us that we only have a few more AIDS conferences before 2030, our global deadline for ending AIDS. That’s not quite 16 years. To see the kind of progress we saw between the first and second Durban conferences, we need to push forward with new science and effective programming—and we need to do more. We need to lead with compassion; we need to truly listen to those vulnerable people we are trying to reach.

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