
Michael Louella and Miranda Smith
Another Case of HIV Cure Hype-atitis
Over the last week, another rash of articles claiming an HIV cure has swept across the web. The underlying story, however, is nowhere near a cure for HIV. The story is not even based on a scientific study. Many media outlets appear to be either ill-equipped or too lazy to report responsibly on HIV cure advances. This has a flow-on effect for everyone who reads their material, including individuals and organisations that pass the message on.
In this article, we outline the real story and where the media went wrong. We also outline some easy steps to help you identify bogus cure claims in the future. Protect yourself against HIV cure hype-atitis!
So, what was at the beginning of the hype?
The news really started as a press release from a company, American Gene Technology (AGT). Their press release (dated 18 October, 2019) announced the submission of an Investigational New Drug (IND) application to the United States Federal Drug Administration (FDA). IND applications are needed to allow early stage clinical trials to be done in humans.
The application related to a gene therapy strategy called AGT103-T. The company has not yet tested this strategy in a single human – either with or without HIV. The IND application would enable human testing to be done legally.
A second announcement (dated 24 October, 2019) detailed plans to combine AGT103-T with a therapeutic HIV vaccine in collaboration with another company, GeoVax.
What is AGT103-T?
AGT103-T involves the insertion of new genes to enhance HIV-specific immunity. Because AGT103-T is being developed as a commercial product, exact details are scarce. There are no published studies in the scientific literature. The company claims that CD4 T cells treated with AGT103-T are both resistant to HIV infection and equipped to attack other cells infected with HIV.
How did all this become news?
Press releases on their own don’t usually generate much interest. Backed by solid science, new discoveries or surprising findings, they become more newsworthy.
Local media in Maryland picked up the original press release and made some unfortunate mistakes. Articles and videos published implied that AGT had a proven cure. This is completely wrong – the strategy is so far untested. Other misleading comments included “the cell and gene therapy is unlike any other” (note: it’s not, and we don’t have exact details on what it is anyway), and “the single-dose drug has a simple purpose – to eradicate HIV so that those infected can win”. This second statement is problematic in at least two ways. First, as there have been no clinical trials on AGT103-T, it cannot be stated that it is single-dose. Second, it implies that people living with HIV are ‘losing’ by continuing to live with the virus.
Amplifying the wrong message
Prominent LGBTIQ media then picked up the story and spread it further. Articles published by US and UK LGBTIQ online outlets continued the hyped-up ‘cure’ story. These stories included direct quotes (obviously unchecked) from the earlier local media stories, including some directly from the AGT CEO. Whether this was due to a naïve enthusiasm for local industry in the original stories, honest mistakes from the LGBTIQ media, or a calculated use of ‘HIV cure’ as clickbait, we will never know. What we do know is that the media, and the HIV organisations who amplify their messages, need to do better on HIV cure.
How to read stories on HIV cure
Here are four questions to help you interpret HIV cure claims (and protect yourself from hype-atitis):
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 magicalspecialpotions.com, or in small, regional media outlets. If you find a report on a specialised website or social media, cross check to see if it’s been published elsewhere!
2. Who or what is the source of the media report?
Is the report based upon a single person’s (or company’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 (or a company’s press release) is not the same as a report from a peer-reviewed scientific study.
3. Who does the media report quote?
If a media report quotes only a person directly linked to the study or announcement, or from someone without expertise in HIV cure research be 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 proven 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.
Acknowledgements:
Richard J, Nelson V, Marc W and Jeff T who helped identify some of the links as they appeared in the media and who have reported the poor journalism at the source.
James McMahon, Brent Allen and Sharon Lewin who co-authored the ‘questions to ask’ and ‘beware of’ sections (as previously published).