Words by Ida Jooste
July and August 2024 saw good news for HIV prevention science and people’s access to what science has on offer – “but as advocates, we know it’s not yet time to celebrate or rest because access is always lagging way way behind the science”, says Yvette Raphael, Executive Director of Advocacy for Prevention of HIV and AIDS (APHA). Raphael is a health advocate in South Africa who considers writing and creating content about HIV science and access a critical part of her advocacy. (See: The basket of HIV prevention options needs to be filled)
She also works closely with journalists around the world to co-create HIV stories and she and a network of peers in Africa put pressure on media outlets to keep HIV on the news agenda.
Recent good news stories on HIV prevention
In late August, Eswatini announced it would soon roll out the first women-controlled HIV prevention product, the dapivirine vaginal ring. The ring is made of silicone and slowly releases the antiretroviral drug dapivirine into the vagina, helping to reduce a woman’s risk of acquiring HIV.
Uganda also announced good news in late August: plans to introduce a long-acting injectable HIV prevention drug, known as Cabotegravir, from September.
In July, at the 25th International AIDS conference in Munich, an HIV prevention game-changer was announced: results of an HIV prevention drug trial showed that not a single one of the more than 2000 participants who received the six-monthly injection of lenacapavir acquired HIV during the study period.
“Lenacapavir has the possibility of transforming the HIV prevention landscape and changing the lives of millions of people around the world. There must be no delays in making it available globally. Now more than ever, we need speed, scale and equity to ensure we get impact”, said Mitchell Warren, AVAC’s executive director when the study results were made known.
At a panel discussion at AIDS 2024 titled “Putting people first: How to translate science and policy to the world”, Peter-Philipp Schmitt, an editor with Frankfurter Allgemeine, said its undeniable that HIV is a scientific success story. However, “the next step is to ensure that we roll out these new prevention tools as soon as possible to people in lower and middle income countries.”
“These are all stories for which we drive coverage in the media science cafés which we host every month”, says Aghan Daniel, Secretary of Media for Environment, Science, Health and Agriculture (MESHA). MESHA leads a Consortium of media science cafés in East and Southern Africa, who also host cross-border cafés on breaking HIV news of regional interest or multi-country topics. The media science café conveners in Zambia, Lorraine Mwanza, and Zimbabwe, Anna Miti, both attended AIDS2024 and took home dozens of story ideas for discussion with health journalists in their countries. “Media sparks conversations through reporting from a variety of sources, not just the scientists, thus driving interest in uptake of medical products and ultimately driving demand”, says Miti, who heads up the Health Communicators Forum in Zimbabwe. Journalists who attend media science cafés get to know the science, then consider how to best translate it for their audiences.
The media panel at AIDS 2024 offered thoughts on making complex scientific and policy concepts accessible to global audiences – so that audiences are empowered with the knowledge required to make the right choices. Apoorva Mandavilli, award-winning health and science writer for The New York Times said stories are always about people. “Even when you write about the science, about the new treatments, prevention options, long-acting PrEP – whatever it is, it’s always about the people.” Ashleigh Furlong, a health reporter for Bloomberg agrees. “If I tell my editor I want to write a story about this long-acting injectable, the question will be ‘why should we care about it’ and then I need to explain why this is important for women, for example, who can’t take a daily prevention pill, because they don’t want their partner to see. That will get an editor to say, yes we want to write that story.”
It’s never just the science
Atul Gawande, the Assistant Administrator for Global Health at the U.S. Agency for International Development oversees USD 4 billion and with a commitment to advancing equitable distribution of what health science delivers. He’s also an author and opinion piece writer, connecting science with story.
“How I approach the stories that I write or even the work I do at USAID and in public health is: people cannot connect information without a story.”
In an exclusive interview with Anna Miti and Rosemary Onsare in the media science café program, and myself, Gawande said it takes work to unpack the science. “Whether you’re a journalist or a doctor or anyone trying to bring along people with what you’re doing, you have to get in the shoes of the people for whom this matters most. What is it like being a member of the community whose life depends on what we do?” We asked him how journalists can keep the HIV story fresh. It’s still a public health crisis and yet has been with us since the early Eighties. “I think the way to capture it is to take an incredible individual story that connects to the larger story
“Sometimes people just tell a story, and they don’t know why. In medicine and public health, you have so many stories, somebody has died, and it’s tragic, and there’s the dramatic story of what this person went through. But we must also get from this story an understanding of why this matters”. – Atul Gawande, Assistant Administrator for Global Health, USAID
For Gawande, it matters, because the suffering or death could have been avoided.
Mia Malan, the founder and editor-in chief of Bhekisisa a South Africa based health news startup told the media panel at AIDS 2024 that journalists can also make a difference by considering how to reach policymakers. Around a story like the breakthrough science on lenacapavir, Bhekisisa would write content on health policy to reach decisionmakers, but it does not end there. “The people who are going to use PrEP, they are part of that decision-making process, because they need to fight for what they want. So we’ve switched to also doing TikToks and Instagram posts because we want to reach those people as much as the health department to invest money in it”, says Malan.
Content is King. Information integrity matters.
Whether an in-depth opinion pieces or a fun instantly shared video, trustworthy information matters.
Speaking at a session at AIDS2024 titled “Fake News, misinformation and the HIV response: Learnings from COVID-19”, speakers highlighted that the fear and confusion that accompany disease means it is critical that people have trusted sources to turn to. Heidi Larson is the founder of the Vaccine Confidence Project says and runs a 70 country study called The Global Listening Project. Larson says trust is key, but we still have to get the facts right. “Radio and talk shows are great for hearing what the talk is […] Listen and listen again to people’s concerns and target communication at the whole person, not just their body in the context of medicine”, is her advice and insights from years of studying how to counter mistrust and misinformation.
Atul Gawande reminded journalists that in science reporting, they have to say that the information we have is what we know to be true at this time. In science, we get new insights. That means the information changes. He said journalists must communicate changes in scientific insight and explain that science is a quest. “That’s how you gain trust.”