HIV cure in the media – how to sort fact from fiction

Medical research and the media often make an uncomfortable mix. Research can be slow going with many different ideas and uncertainty popping up along the way. The media is fast paced, seeking sound bites and certainty with often-inflexible deadlines.

However, as most research is publically funded we need to ensure that the community is kept up-to-date and that the excitement of scientific advances gets shared among those working in research and with research participants.

The recent article of the success in editing out the HIV gene from infected cells has had wide-ranging media interest. But some of the media coverage has overstated the impact of the study. Catchy headlines work – we are drawn to stories claiming ‘breakthrough’ especially in something like an HIV cure. However, the story behind the scenes is often more complicated than the headline and science rarely advances with one dramatic leap forward.

Below are some things to consider when reading media claims of an HIV cure:

1. Where has the media report been published?

A real breakthrough will be reported in a high-end medical journal or an international media outlet. A cure for HIV is never going to be reported first on something like magicalspecialpotions.com

2. Who is the source of the media report?

Is the report based upon a single person’s claim to have developed an HIV cure? Has the claim been presented at a conference or in a medical journal? A report based on someone’s personal claim is not the same as a report from a peer-reviewed scientific study.

3. Who is being quoted in the media report?

If a media report quotes only a person directly linked to the study, or from someone without expertise in HIV cure research be more cautious.  Good quality media reports will quote from an expert not directly involved in the research.

4. What is the evidence?

Is the report based on a theory? An actual study? Was the study in an early (lab) or late (clinical) phase? Findings from a small lab study (sometimes not even with people) is very different from a large-scale clinical trial with real people. Moving a study from the lab to the clinic can take decades of work.

Beware of…

• Claims of a ‘set timeframe’ (within five years or ten years): many studies take one step forward then two steps back, that is often the nature of research.
• Claims of certainty: if something has not been tried before, first it needs to be tested. That takes time.
• Claims of an HIV cure: to date, there is only one known instance of HIV cure and a few dozen reports of remission – there is a big difference.
• Claims of ‘balanced reporting’: presenting different opinions in a media report as a ‘balanced’ assessment. For each opinion ask yourself what is the evidence for what each party is claiming?
• Claims that are too good to be true: they probably are.

In the case of the recent media on the gene editing study, this was not entirely new science but it did answer important questions and the study was done in a thorough and reliable way. The media made claims of a cure in three years which were definitely not words used by the researchers themselves. Even though the publisher has since withdrawn the headline, the story was picked up by many other news agencies within hours.

Although the reports were based on a peer-reviewed journal and from reputable media sources, the study had only been done in a lab (early phase) and had not even progressed to the first steps of a clinical phase. With the claim of a cure within a three-year timeframe it becomes clear that the desire for a catchy media headline had run away from the truth of promising early stage research on a possible strategy for eliminating HIV.

Dr Miranda Smith, The Peter Doherty Institute for Infection and Immunity

Dr James McMahon, Department of Infectious Diseases, The Alfred Hospital

Brent Allan, Living Positive Victoria; Industry Liaison Forum, International AIDS Society

Professor Sharon Lewin, The Peter Doherty Institute for Infection and Immunity