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. Misleading Stories 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. Research Translation 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. Find out: What is the HIV vaccine story now? 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. (Banner photo courtesy of AIDS 2018 Media Team)
Impact: Healthy Communities
Access to local and relevant health information helps people thrive.
Misinformation, the scarcity of health information and even an overabundance of health information make it difficult for individuals and families to make informed decisions about their lives and well-being. Often, journalists don’t have the skills or resources to decipher complex science and translate it into plain, actionable language. Additional expertise is needed to draw links between health and climate, the environment, women’s rights and humanitarian crises. Only once these issues have been effectively communicated will individuals and communities be empowered to take action and pressure policymakers to better their health.
Internews supports journalists with the tools and training to understand scientific advances in health. We offer tactics for communicating health information effectively through data journalism, investigative reporting and engaging media. We have developed a rumor-tracking methodology to help prevent the spread of misinformation. Internews guides journalists to help audiences see how climate change impacts health and how disease outbreak can have local and global impact. Our work helps underserved and marginalized communities access health information that leads to action.
Health Information in Action: The ECHO Trial
A closely-watched clinical study of the relationship between contraception methods and HIV, known as the ECHO trial, recently concluded. The results of the study have far-reaching implications for women’s health and the family planning decisions they make, so Internews worked in advance of the study’s release to prepare more than 100 journalists in four key HIV-prevalent regions to report in advance of, upon release of, and in follow up to the study. Here’s a look at why that preparation matters:
In the case of ECHO trial coverage, when results were released at the South African Aids conference in June 2019 – showing no substantial difference in HIV risk among the three forms of contraception under scrutiny – Internews partner journalists were able to swiftly put together media reports which reflected the science and made sense of the findings for their audiences. Their news and analysis pieces have been described as “accurate,” balanced,” “compelling,” and “focused on the essential issues on how to move forward” by key health partners.
Internews’ work in this area is supported by the Bill and Melinda Gates Foundation. An analysis by key partner organization AVAC shows media coverage on results, released in mid-June 2019, to have been accurate. The media has also received praise from the WHO for the responsible manner in which ECHO and surrounding women’s health issues have been reported. Journalists in 18 priority countries will keep tracking how ECHO translates into policy, as other insights from the trial demand urgent interventions for HIV prevention and demonstrate that there is an unfinished agenda to meet the range of needs of those at risk for unplanned pregnancy.
In Focus: The Links Between Climate Change and Health
Some hazards in the environment can directly affect health – air pollution can cause respiratory disease, lead paint in houses can affect a child’s development, and pesticide exposure is attributed to higher rates of birth defects, developmental delays, leukemia, and brain cancer among farm worker children.
Communities rely on journalists for alerts of these hazards, as well as information on the measures people can take to protect themselves or advocate for regulation.
Watch: Reducing Stigma with Empathetic Coverage
Featuring the reporting work of Zipporah Karani, a Kenyan journalist trained and mentored by Internews, this 2012 video shows the impact of thoughtful, fact-based coverage of sensitive issues, and how that kind of reporting on health in a way that breaks down taboos and resonates with affected communities:
In Focus: When Health is a Humanitarian Crisis
Since the 2014-2016 outbreak of Ebola in West Africa, and continuing today in DRC, Internews has worked with media in affected areas to counter rumors, listen to affected communities, and create feedback loops to humanitarian aid providers. This work provides actionable health information but also aims to and reduce tension between health providers and communities wary of interventions.
Read a story about reporter Emmanuel Degleh, a Liberian reporter who got his start reporting on Ebola, and has gone on to break news and complex investigations related to health and government accountability.
“Health care is about politics,” says Degleh. “It is about policy. It is about funding. And it is about the most compelling story for a journalist of all, life and death. It is urgent.”
During the Ebola crisis, in 2014, Degleh and fellow trainees of Internews formed a journalist organization, Local Voices Liberia, to support one another and provide a platform for ongoing health coverage in the country. In June 2019, in the USAID/Liberia 2019 awards, Local Voices Liberia won the Civil Society Organization of the Year award, a testimony to the sustainability of their work.
In Focus: Maternal Health and Government Accountability
Health information is particularly critical to women. Issues of gender discrimination, equal rights and prosperity are inseparably tied to the ability of women to make choices for their health and the health of their families. Read a story about Internews’ work that put maternal and child health at the forefront of reporting, and helped health systems workers like doctors, administrators, and obstetricians understand how to better reach women with health information.
More information: Health Voices Amplified
A holistic approach to health information – understanding that climate has health impacts, that women’s rights demand equitable health care and that governments must be held accountable for health policy - is at the core of Internews’ work to equip people everywhere with the information they need to live healthy lives.