A journalist friend once said to me — in all earnestness: “What will you people who work in HIV do if a cure is found for HIV tomorrow? All the programs you’re working on will have to close down.”
There were so many things wrong with that statement, I didn’t know where to start.
A cure will not just be found. It will not be tomorrow. If and when it is “found,” a new (possibly decades-long) strand of work will have just begun.
18,000 scientists, policymakers, advocates and people living with HIV are gathered in Durban, South Africa this week at the International Aids Conference, AIDS 2016, to share new science and to advocate for collaborative efforts to deliver tools that prevent HIV. Among the new science is “cure research,” which is still in a formative stage.
“Towards an HIV Cure” sessions have clearly outlined how complex the science is and how long it will take before we get there. Moreover, National Institute of Allergy and Infectious Diseases (NIAID) Director Dr. Anthony Fauci has told POZ he believes that success on the cure front is a matter of “if” rather than “when.”
At a cure symposium ahead of the Aids conference, Fauci was more upbeat, but also cautious:
Fauci reminded us about the now famous Timothy Brown case, the so-called “Berlin patient” who had an underlying malignancy that required stem cell transplantation — which he got. For several years now, Brown has been free of the technical HI virus despite the withdrawal of ART. “So that is what we’re talking about: the possibility that this is the kind of thing that will be seen,” said Fauci. “The way we have gotten to where we are right now and the way we will get to a cure, if and when we get to a cure, would be to very carefully do what we are doing, and that is: to follow the science,” said Fauci.
Yes, the science is exciting and multi-faceted.
Besides the Berlin patient, other patients in this quest for a cure have become famous: the “Mississippi baby,” the “Visconti cohort,, the “Boston patients” and more. But scientists are keen to remind us that only Timothy Brown has been completely rid of the virus.
This science about the difference between Brown’s case and the others is even more complex to explain. What Brown’s and other cases mean for the future of HIV and how much hope we should have is a story that journalist, science communicators and bloggers must tell. But how?
There’s guidance at a presentation at the IAS 2016 Research Literacy Zone titled “Hope vs. Hype in Reporting HIV Cure Research: Advice for Journalists, Bloggers and Concerned Consumers of the Media”
The session, offered by AVAC, Treatment Action Group, defeatHIV, The University of North Carolina and Internews reviews examples of how HIV cure research has been portrayed in the media and promotes the correct and nuanced use of language to discuss HIV cure research, which would set realistic expectations about the science.
The session also provides the 101 of cure research: no need for on-going medication (ARV treatment), no symptoms, no viral progression and no risk of transmission. The language of cure is a reflection of how science has evolved. We talk of Sterilizing/Eradication — where HIV is completely removed from every cell in the body and the person is HIV-free. A Functional Cure or Remission means HIV has the potential to resurface.
The Hope Vs. Hype in Reporting HIV Cure Research session shares data from a media scan showing most cure coverage comes from the US and Europe, often pegged to research findings, conference news, and journal publications. There has been very little science-based or research-driven coverage in Africa to date, but this could change as more research happens on the continent or as more promising and tangible research results are released.
One of the reasons for offering this session is to help journalists guard against serious misrepresentation, such as that made by the UK’s Daily Telegraph, which wrote in 2013 “The Cure for HIV Possible Within Three Years.” POZ corrected it in A Cure for HIV is Not Around the Corner and The Telegraph revised its online article.
By contrast, New Vision in Uganda reported accurately on Cure information presented at CROI 2016 and placed the story on the front page. A better headline would have been “Breakthrough in AIDS Cure Research.”
The Hope vs. Hype session talks about the media’s key role in helping to set realistic expectations.
- Articles about HIV cure research results should include perspectives and quotes from independent scientists not involved in the study or studies being reported
- Be skeptical about any articles making claims about timelines — that something will happen “within x years”
- Always cite the original science paper
- Avoid inflating research results
- Avoid speaking about “HIV cure” by itself — always include the word “research” about HIV cure science.
Researchers and advocates, too, have a critical roles in ensuring accurate media coverage.
- Explain findings in language that is understandable
- Use nuanced language and don’t use jargon
- Take time to explain complicated concepts
- Be available for follow-up questions
- Don’t hype results
- Be realistic about timelines and the impact of findings
- Cultivate relationships with journalists and provide ongoing information
- Don’t expect accurate, nuanced, favorable coverage without taking time to work with a journalist
How would you headline it?
The session also reveals findings from a survey among journalists about their perceptions on cure research. These are some of the responses when the surveyed journalists were asked how they would headline a story announcing a cure for AIDS:
- “HIV/AIDS Gets Cure At Long Last”
- “Cure for AIDS at Last!”
- “FROM GOD FOR HUMANITY”
- “No more condoms, scientists discover cure for HIV”
Getting the language right
Gus Cairns, HIV journalist and activist says the problem is with the word cure itself. “I think remission is the word we should be using … because this is the word we already use in cancer. You’ll never hear a doctors saying you are cured of cancer. They say you are in remission, in three or five or ten year remission. That means you’ve had your surgery or chemo and the cancer has not come back for x number of years. That’s the language we are going to have to use, because that’s the accurate language.”
Nobel laureate Françoise Barré-Sinoussi, credited with identifying HIV as the cause of AIDS, agrees. “Remission is what it really is for now. It is not very different from what cancer remission means. But at least, in principle, there has been proof of concept of the notion of a real cure, and that gives us hope.” Barré-Sinoussi speaks passionately about the research community’s commitment to advancing science collaboratively in order to get to a cure or functional cure. Using the term “remission” does not solve everything, though, as many countries in Africa have such poorly resourced cancer treatment programs that few people are in cancer remission, and hence the word is not widely used.
For Kenyan science journalist John Muchangi, “cure” is one of the main stories he’s following at Aids 2016. “It’s new science, so it’s exciting for my readers. The trick about this story is to tell it well and to temper expectations at the same time.”
As Dr. Paula Munderi, Head of the HIV Care Research Program at the Medical Research Council in Uganda said: “Getting our sound bites right when talking about ‘HIV cure’ is going to be critical going forward.”
Ida Jooste is Global Health Advisor at Internews.
(This story was originally posted on Medium.)