Internews’ Coalition to Accelerate and Support Prevention Research (CASPR) project works with journalists to translate the science around HIV prevention and treatment.
Every two years, in July, when thousands of delegates – top scientists, global health leaders, celebrities, advocates, activists, affected people and health budget writers – gather at the international AIDS conference, editors fix their eye on the big breakthrough story: Is there a cure? Do we have a vaccine yet? What will it take to end HIV?
The answers? No. No. Lots.
In other words, no clear headline story emerged from the conference, which was held in Amsterdam this year. And therein lies the story. In a tweet or two, this is where science and society are at with the HIV response:
- There is a #HIVprevention crisis. The success in saving lives has not been matched with equal success in reducing new #HIVinfections.
- Miles To Go: a new @UNAIDS global report warns that progress in ending the #AIDS epidemic is slowing and time is running out to reach the 2020 #HIV targets.
- #AIDS2018 — The Story is Vulnerable: The AIDS response is largely missing the boat on combination prevention, with sloppy definitions, inadequate funding and poor adaptation of evidence.
- “The world is badly off target to meet UNAIDS goals of ending AIDS by 2030, but some countries are making impressive progress.”
As before, hundreds of journalists attended the conference – their stories a reflection of the inch-by-inch progress in science, and of the fears that complacency will cancel out gains. Stories about stigma and how not to be seized by it. Policy stories that push for the rollout of Pre-Exposure Prophylaxis (PrEP). Global goals and country-specific strategies to reach the targets to attain what is termed “epidemic control.”
The profound promise of new prevention technologies being tested for efficacy in several countries in Sub-Saharan Africa: anti-retroviral (ARV)-based vaginal rings, long-acting injectable PrEP, the infusion of those super effective antibodies produced by some HIV infected people into the bloodstream of HIV negative people to test if it can help them ward off infection. And of course, the quest for an HIV vaccine.
Coming out of the AIDS conference in Amsterdam were, predictably, a mix of HIV vaccine stories. Just before the conference, a story with this headline was published: “Huge Breakthrough in Global Fight against HIV with a Promising New Vaccine.” The story was not accurate. But unpacking where this reporter – and others who wrote similar stories – got it wrong gets us to heart of why vaccine science is a knotty area to report on.
The story had missed the nuance of data published in The Lancet earlier in July. It gets very technical, but, in a nutshell, the misunderstanding stems from the timing of the release of a subset of data from the APPROACH safety and efficacy vaccine study, which is relevant and meaningful to those who follow vaccine science closely, but not necessarily to those who don’t. Earlier results from this study had already been sufficiently impressive for the selected candidate vaccine to be taken forward into a large-scale human efficiency trial dubbed Imbokodo. The new data highlights findings from a side study of APPROACH, which shows that the candidate vaccine produced an immune response in rhesus monkeys similar to the response in humans. In a Comment piece, The Lancet describes the findings as a “New step towards an HIV vaccine” (not a “huge breakthrough” and it is not a “new vaccine”). The Independent more soberly reported: “HIV Vaccine Human Trials Leave Scientists 'Cautiously Pleased.'”
I am lucky to be working with journalists who want to tell stories about this science – and not just when there is a major AIDS conference – through a project called CASPR, the Coalition to Accelerate and Support Prevention Research. CASPR supports journalist organizations hosting media science cafés in Uganda, Zambia and Kenya.
In all three countries, health journalists get the question, “Why is there no HIV vaccine yet?” The reason is because it is complicated. Their stories explain that vaccines teach the body’s immune system how to mount a response against the agent that has infected it. However, HIV attacks the very immune system that has to mount a response. Plus, HIV makes many copies of itself and mutates so that the immune system cannot recognize it. But scientists – and the thousands of volunteers in clinical trials – persist with this quest, because an HIV vaccine would be a game changer. Somewhere between the collective eagerness for a vaccine and the complexity of the enquiry, media stories can be overly upbeat or just wrong.
The purpose of CASPR is to create an enabling environment for HIV prevention science. This means – among other things – that the science must be understood.
“If they understand it well, they’ll even get excited about it!” Ntando Yola told East and Southern African health journalists who had gathered in Botswana in April to learn more about translating the science behind a number of HIV prevention trials being held in their countries.
Ntando is a community liaison and education officer with the Desmond Tutu HIV Foundation in Cape Town. His job is to ensure that communities living in areas where trials take place are given the space to participate in decisions, that they feel ownership of the research and have an interest in its success. Right man for the job! He had the journalists spellbound with tips to ensure their audiences grasp the concepts in prevention science.
In his work, Ntando is asked about HIV prevention options all the time. There have been breakthroughs with antiretrovirals used as prevention and success stories with voluntary medical male circumcision (VMMC). Ntando says the prevention option we’ve heard scientists talk about for decades now demands a way with words that keeps the dream alive, yet doesn’t create false or fast hopes.
“The HIV vaccine is that special child who gets all the attention. Everyone creates a big fuss about the child, but he does not seem to have much to show for the fuss,” says Ntando. “We always hear about his potential and that we need to wait a little before he reaches his full potential.”
Finding a Way to Communicate the Complexity
Steve Wakefield, External Relations Director for the HIV Vaccine Trials Network (HVTN), is a health care advocate with over 30 years of involvement in projects that increase community participation, particularly for African Americans. He has been talking about the potential of an HIV vaccine for as almost as long as we’ve known about the virus.
In 1998 he was on one of his many fact-finding and support missions in South Africa, and was asked by another stalwart of community engagement, Janet Fröhlich, to join her at a vaccine preparedness event in a town called Hlabisa, in KwaZulu-Natal, often described as the epicenter of HIV infection in South Africa. Janet was working for South Africa’s Medical Research Council (MRC) at the time, and her drive was to ensure that people have sufficient information about what an HIV vaccine could achieve. In time, South Africa’s research institutions would want to enroll volunteers into vaccine trials. Wakefield and Janet recall how they consulted with community leaders about finding metaphors for an HIV vaccine that would be clear, but not condescending to people who were already desperate to see the end of AIDS.
The child immunization effort in the public health system was very successful in rural South Africa, so the early vaccine preparedness team linked an HIV vaccine to concepts like injections to prevent smallpox and measles. Immunization, “ukugoma mntwana kuvimbela isifo” in isiZulu, translates as “protect the child to prevent illness” – exactly what an HIV vaccine would do. Cattle farmers also could relate to the idea, as only vaccinated cattle were healthy.
Moving from the farmyard to the kitchen, Wakefield also spoke about how making a vaccine is really the same as baking a cake. “The only way to get to an edible cake is to try and try again – first the human body has to tolerate it, but it is only really a cake if it is sweet and has good texture.” Wakefield says if a journalist has a gut feeling that such comparisons might sound too simplistic, they should listen to their inner voice. But that inner voice should also warn them if the language from scientists is too complex. Finding something that is accessible, yet respects and reflects the complexity is what successful research translation is about.
Wakefield says journalists need to find a balance between writing that is too complex or too condescending. Finding something that is accessible, yet respects and reflects the complexity is what successful research translation is about.
Media Science Cafés for Ideas Exchange
Esther Nakkazi, the founder of the Health Journalists Network in Uganda (HEJNU), uses the media science cafés as a platform to link HIV scientists, advocates and journalists in an ongoing conversation about complex issues like the HIV vaccine. This way, journalists would know how to evaluate new data. Is it a breakthrough or just more information about the process of getting to a vaccine?
In Kenya and Zambia, Daniel Aghan and Lorraine Mwanga lead similar get-togethers, through The Media for Environment, Science, Health and Agriculture (MESHA) and Zambia Institute of Mass Communication (ZAMCOM) respectively. Aghan and Mwanga agree that journalists should network and follow the long-winding research, then help their readers, listeners and viewers make sense of it.
The HIV vaccine is that “special child” Ntando told the journalists about. It’s a bumpy road, but we’re heading in the right direction. We’re baking cakes until they don’t flop.
Estimates are that in some parts of the world, an effective HIV vaccine could reduce new annual HIV infections by nearly half in its first 10 years. Important vaccine results are due in 2020 and 2021 and editors will rightly have their sights on those stories. Journalists must know what to make of the data and tell their readers and listeners if there is a breakthrough or not. If yes, it will be an important story to get right.
Ida Jooste is Internews’ Global Health Advisor.