What’s the HIV Story Now?

This is the third and final post in a series about journalism and health reporting from the AIDS 2016 conference. Read part one and part two.

It was a week of red letter days on the HIV/AIDS calendar: Aids 2016. More than 16,000 delegates gathered in Durban, South Africa last week to inform the world about their work and to be informed. Among them were hundreds of journalists who filed thousands of reports on HIV in one week — about the science that says strides have been made, but a vaccine and a cure are still far away; about the activism that is needed to push governments to fully embrace the prevention tools that are available; about mounting a multi-strand strategy to contain and end the epidemic; about the victories of millions on treatment and about fear and stigma that drive HIV into dark corners.

But what is the big HIV story now and in the months to come? The stories that survive the conference event and that committed health journalists will push onto the news agenda?

Patricia Mc Cracken, a South African writer and photojournalist says a story she will continue to follow is “nurses and community health workers squashed in the middle. We are relying on them, but what do we give back to them?”

A small cemetery with cardboard gravestones is set up outside on the grass
Credit: Ida Jooste/Internews

At Aids 2016, the science was clear: wherever possible, people with HIV need to be put on treatment as early as possible. This ensures they will not get opportunistic infections. It may guarantee normal life expectancy and it stops HIV transmission in its tracks, but precisely those countries with the biggest problem have the poorest health infrastructure — and it strains health workers to breaking point.

Anna Miti, a Zimbabwean health journalist says she is following the money. “We need money for research, treatment, for the implementation of programs. Activists are saying the money is there, it just needs to be put in the right place. A worrying trend among donors is ‘conditional funding,’ which sometimes means politics and saving lives are at odds.” Anna was one of a select group of journalists given an opportunity to interview Bill Gates at the conference. Delegates heard that AIDS funding is flat-lining.

A large sign says,
Credit: Rosemary Mburu/World Aids Council

Jon Cohen, staff writer for Science, based in California, says “I work on the cook book analogy for the epidemic,” says Jon. “We know how to stop it, but do we have the cooks?”

Jon says the best example of this is that South Africa, the country with the highest number of HIV-positive people in the world, should be introducing Pre-Exposure Prohylaxis (PrEP) for everyone at high risk of HIV infection, because that is what the science dictates. Studies have shown PrEP almost completely protects an HIV negative person from being infected by their HIV positive partner. With PrEP, those at high risk for HIV infection would take a daily antiretroviral pill to prevent infection.

Incoming International AIDS Society (IAS) President Prof. Linda-Gail Bekker, who works at the Desmond Tutu HIV Centre at the Institute of Infectious Disease and Molecular Medicine at the University of Cape Town, has said she would campaign for the roll-out of PrEP during her two-year tenure heading up the IAS.

South Africa and Kenya are the only two countries in Africa that have introduced PrEP into public health programs, but there is disappointment that South Africa is just dipping its toes in the water, providing PrEP for sex workers only. Men who have sex with men and young women are at high risk too in all of Sub-Saharan Africa. So it’s a story about political leadership.

Jon Cohen says the HIV science story continues to be that of a wily virus. “If this were Zika, there would be a vaccine after more than 30 years of inquiry. If this were TB, there would be a cure. There is no cure because HIV is so hard to get rid of.” Cure research is about cutting-edge gene manipulation and we see the field of cancer research and HIV research putting their brains together to try to outwit HIV.

Conference participants stand around a table with a model of a virus on it
Exhibition showing a model of a virus. Credit: André Smith

John Muchangi, a journalist for The Star in Kenya wants to follow the cure research story. “Obviously, it will be important to temper expectations. Some people may think there’ll be a cure a year from now. So we need to explain what “cure” really means. What we really have from the latest studies is remission.”

The science is complex, but perhaps even harder to pin down is human sexual behavior. A breakthrough study presented at AIDS 2016 by the Centre for the AIDS Programme of Research in South Africa, Caprisa, used phylogenetics to trace the sexual links between men and women at their trial site in rural South Africa. It’s a viral genetics detective story that shows how older men having sex with younger women drives the cycle of HIV infection. “We knew the conference was going to be about new and very complex science,” says Kerry Cullinan, Managing Editor of Health-e News in South Africa. “But we want to remind readers that it’s about a virus living in the bodies of real people. So, our approach around the conference has been to tell the stories of ordinary people, like teenagers negotiating a world of sex and intimacy in a high transmission context. About sex workers and whether they are getting PrEP and using it. In other words: it’s about what’s the importance of science for ordinary people and about what the virus does to ordinary people and their lives.”

Ernest Waititu, writer for The Global Fund agrees. “Follow the people with HIV,” says Ernest. The HIV story is not so ‘out there’ any more, he says. There have been some good news stories, and as a result, we see some complacency. The story now is that despite all the tools we have, hundreds of young women become infected every single day in South Africa alone. “There is a mainstream response, but this only means that marginalized groups have gone to even darker corners. We don’t see the dying; journalists have to go to those dark places, where the story is. This is the next wave of stigma that can be addressed by depicting the stories of real people and their struggle.”

As the conference came to a close, Peter Piot, Director of the London School of Hygiene and Tropical Medicine and founding Executive Director of UNAIDS said we have the tools to contain HIV, but we do not yet have a vaccine and a cure, so we do not have the tools to end it.

More and better science will end it, and political will. Those are stories to tell.

Less fear of disease and rejection will end it. Those are stories to tell.

As academy award winner Charlize Theron said in her rousing address to conference delegates: “HIV isn’t just transmitted by sex — it’s transmitted by sexism, and racism, poverty, and homophobia.
 If we are going to end AIDS, we must cure the disease in our hearts and minds first.”

And that is the most complex story to tell.

Ida Jooste is Global Health Advisor at Internews.

(This story was originally posted on Medium.)