Fake news is bang on trend in 2017, but misleading headlines are nothing new to the world of medical research. An almost inevitable outcome of new advances in HIV treatment is that someone somewhere will herald each new development as a cure. Since the epidemic was first recognised, a cure has eluded researchers, but as in other medical specialties, notably oncology, small advances or early-stage discoveries are frequently seized on by the media—especially the more click-hungry outlets—as major breakthroughs with imminent clinical impact. The consequences are raised hopes and vexed expectations that can damage relationships between people with HIV and their care providers and undermine trust between patients, the medical research community, and the media.
Two recent releases of preliminary trial results have both garnered widespread coverage—some of which has gone beyond reasonable interpretation of the facts. In October last year, a British man participating in a trial was widely reported to be cured of HIV after the early stages of a 5 year trial. While the word cure featured in numerous headlines, the specific details of the approach were barely reported, the highly preliminary nature of the results was glossed over, and the fact that the patient was also on combination antiretroviral therapy throughout was absent from many reports. The results of this study, combining vaccination and kick-and-kill, are eagerly anticipated—but the primary 42 week outcome will not be available until the end of this year at the earliest, and long-term follow-up will be essential before a cure can really be claimed with any degree of certainty. Similarly, early results of BCN01-Romi, a study designed to investigate the safety of a combined vaccination–kick-and-kill approach, were seized upon after presentation at the Conference on Retroviruses and Opportunistic Infections. Reports that patients were apparently virus free without drugs after pausing their antiretroviral treatment, touched lightly, if at all, on the fact that eight of 13 patients had viral rebound, and dwelt on the very early (in terms of weeks) results in five patients with virus loads below 2000 copies per mL—all of whom had started antiretroviral treatment very early and had suppressed virus for 3 years before entering the study.
In most cases, the worst these claims of a cure do is create unrealistic expectations for vulnerable patients and burden for care providers who have to explain the real meaning of the research behind the headlines. Patients’ groups often face the brunt of questions from people living with HIV—and their commitment to interaction with researchers and contributions to research are a cornerstone of progress in research into a cure for HIV. Indeed, the HIV cure research endeavour in general is an example to other medical specialties for how to engage with patients’ groups in research.
A cure will be found—maybe one of the approaches currently under investigation will deliver the goods, or perhaps some as yet unexplored avenue will finally provide a scalable method to enable people to permanently stop their medication safely. Perhaps in a few years, but potentially (although hopefully not) decades from now. Until we have a fully tested, proven cure, the HIV community must work harder with the lay media to ensure that advances are reported even-handedly, and should speak out when the headline does not reflect the story. We ask the media to think more carefully about the consequences of raising false hopes over cures with clickbait headlines, to disinter the caveats (which if presented at all are often buried at the end of their reports), and to give them the prominence they deserve. Most importantly, reporters should think twice before including the C word in a headline.
Editorial, Published April 2017