Of bumpy roads and baking cakes

The HIV vaccine story – getting it right.

Every two years, in July, when top scientists, global health leaders, celebrities, advocates, activists, affected people and health budget writers gather at the international Aids conference – held somewhere in a world city, to accommodate the thousands of delegates - 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?  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, the stories. In a tweet or two, this is where science and society is 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 #HIV infections.

-        Miles To Go: 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: http://bit.ly/2NZIE4A

-        #AIDS2018 — The Story is Vulnerable: https://www.avac.org/blog/aids-2018-story-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”. http://www.sciencemag.org/news/2018/07/campaign-end-aids-2030-faltering-worldwide …

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 show 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). 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. Only when people know the significance of an enquiry can they be expected to buy into it. “If they understand it well, they’ll even get excited about it!”, Ntando Yola told a group of journalists from 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 make 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.”

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 epicentre 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 enrol 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.” The metaphor extends to the idea that the only way to get to an edible cake is to try and try again. “You can have cakes that flop, and even if you have your mother’s favorite recipe, it must be a cake that the people you made it for actually like.”

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.

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 Lorraine agree that journalists should network and follow the long-winding research, then help their readers, listeners and viewers make sense of it.

So, what is the HIV vaccine story now? There’s guidance in the host of tools AVAC updates annually. Key road markers are:

-         In 2009, the Thai vaccine trial, also known as RV144, showed proof-of-concept that a preventive HIV vaccine is possible. Researchers have continued to build on the results of that trial to refine and develop potentially effective vaccine strategies.

-        HIV vaccine research has been underway for more than 35 years, but vaccines for other diseases that are in use today also took decades to develop.

-        At present, two vaccine candidates and a vaccine-related approach are being studied in largescale efficacy trials: - The HVTN 702 trial, also known as “Uhambo”, ongoing in South Africa, is building on the RV144 trial mentioned above. Results of HVTN 702 are expected in 2021. The HVTN 705/HPX2008 trial, also known as “Imbokodo”, underway in multiple countries in southern Africa, is a proof-of-concept study using a novel vaccine with “mosaic” immunogens. As the name suggests, the vaccine has been designed with the aim to protect against a mosaic of different strains of the HI-virus. In other words, the hope is that it would be effective in different parts of the world.

-        HVTN 703/HPTN 081 in Africa and HVTN 704/HPTN 085 in the Americas and Europe are two efficacy studies testing antibody-mediated prevention (AMP). This research is investigating whether direct intravenous infusions of a broadly neutralizing antibody (bNAb) can prevent HIV infection. Study results are expected in 2020.

-        UNAIDS has called for a scale up of HIV Vaccine research. “There are 36.7 million people living with HIV today, all in need of costly treatment for life, which will be difficult to sustain over the long term. To truly end AIDS, it is essential to find an effective HIV vaccine and a cure.” - Michel Sidibe, UNAIDS Executive Director.

-        Over 35 years of research have proven that developing an HIV vaccine is not easy.

It’s 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. 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.  

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.