We could hear the champagne glasses clinking when we read the headline and the top of this story about the potential for a drug to prevent HIV infections. The rest of the story, though, strikes the appropriate cautionary notes and, for the most part, provides solid information about the strength of the findings about this drug combination. We wish that costs and potential harms had been included. And we also wish the story had made better use of independent experts.
The world has been promised a cure for AIDS for almost as long as the disease has been with us, and yet scientists have not been able to crack the code. They have, however, made dramatic progress in helping people control the HIV virus and prevent its transmission, leading to people who are HIV-positive leading longer, healthier lives than they did 20 years ago. The promise of a silver bullet to prevent HIV is tantalizing – including for journalists. That is why reporters need to be especially careful when piecing together the evidence for yet another AIDS “breakthrough.”
The lack of cost information was disappointing because the best results in the study came from people who consistently took the drug every day for 14 months. That would have cost them at least $5,000, according to a Bloomberg story on the same study. That story also included this important idea. “The study raises questions about whether governments and insurers will pay for AIDS drugs to prevent infections. Truvada costs between $5,000 and $7,000 a year in the U.S. when bought through the health-care system, and more if bought privately”. The story might also have mentioned the trivial cost of condoms, which are known to be effective preventive measures.
The study quantifies the benefits in both relative and absolute terms. “The researchers observed 36 HIV infections in the group taking Truvada, compared to 64 in the control group taking placebo, a reduction of 43.8%. The reduction in risk, however, was very sensitive to how regularly the subjects took the medication. For those who took it on more than 50% of the days, as determined by pill counts and other measures, the risk fell by 50.2%. For those who took it 90% or more of the days, the risk fell by 72.8%.” The fact that the absolute difference in infections was just 28 should have been higher in the story and should have prompted some outside commentary. With 1,125 people receiving the drug over 14 months at a minimum cost of $5,000 a year, this means you would have to spend $6.5 million to prevent 28 infections. HIV/AIDS itself is a costly disease, so this may make good financial sense, but there’s a reason the Bloomberg story raises the issue of whether insurers will pay for it. This story should have been factored into the benefits analysis.
Look at the difference in framing between this story and a Bloomberg story.
This story only noted: “Side effects of the drug were mild, and included nausea in the first month, small increases in serum creatinine and unintentional weight loss.” What about concerns over long-term risk?
But the Bloomberg story notes, “Men on Truvada had more nausea in the first four weeks of the study, and more of them lost weight unintentionally. “The number one message that must go out is, don’t try this at home,” Warren said. “This is not the pill you take and all is well. For those people who think, ‘I’m at risk, I want this pill,’ they have to have a conversation with their health provider.””
The writer makes clear this is a large randomized, placebo controlled trial, sponsored by the U.S. government. The story does a decent job evaluating the quality of the evidence and even quoting the study’s sponsor in a cautionary way. “Dr. Anthony S. Fauci, director of the National Institute of Allergy and Infectious Diseases, which was the major sponsor of the study, cautioned, however, that “No single prevention strategy is going to be effective for everyone, and it is important to note that the new findings pertain only to … men who have sex with men.””
The story does not engage in disease mongering. Given the top of the story, this is notable because the story could have easily painted a doomsday picture of the AIDS crisis in some countries and portrayed this drug as a savior. Instead, the story does a nice job distinguishing the population that was studied in this case and explaining that no one drug is a cure for all populations.
The story did use independent experts, but we wish it had spent more time having someone outside of the study evaluate the strength of the evidence. Again, 28 infections prevented is not a public health victory just yet.
The story could have done a better job explaining how this approach matches up against other approaches. One big hole in the story is no mention of whether men in the study were using condoms, too. The story says, “Subjects were followed for an average of 14 months, and given counseling about using condoms and safe sex practices.” We know condoms can prevent HIV infections, so maybe condoms were doing all the work here. Maybe the men who were adherent to the medication were also more likely to accept recommendations and adhere to condom use. The story should have spent more time on condoms and education about safer sex as prevention measures. Instead, there is a big question that is never answered.
The story says that the drug “Truvada was chosen because it is effective, has few side effects and is already used by more than 1.5 million people worldwide.” It does not make clear, though, where those people are. This story is aimed at a US audience and should have made clear whether this drug is available here. One of our journalist-reviewers had someone ask him today where the drug could be purchased. No doubt thousands of people nationwide have the same question.
The story makes it clear that this is a novel approach that is gradually building evidence alongside other prevention options. “The findings, reported online Tuesday in the New England Journal of Medicine, come only a few months after an African study showed that a microbicidal gel can help protect women from contracting the virus and a little more than a year after a vaccine trial suggested that it may eventually be possible to raise antibodies against the virus.”
The story did not rely on a news release.