One of the guiding principles of the Billy Rubin Blog is quite simple: namely, that mass media in the US provides grossly distorted and exaggerated "news" to a largely uncritical public that appears to be not only more interested in ESPN, but only interested in said network. This blog's major concern is the distortion of scientific and medical news, and this week provided an example of just how irresponsible "journalists" can become in pursuit of a sexy headline.
"German doctors declare 'cure' in HIV patient," the Reuters headline proclaimed Wednesday. The story got legs immediately, and was picked up by nearly all of the outlets one would consider mainstream: the Fox coverage can be found here, CNN's article can be found here (more on CNN shortly), Yahoo's article is here, the US News & World Report brief is here. Once the stories showed up on the respective websites, it rapidly rocketed onto the "most viewed" and "most e-mailed" lists: at the time of this writing, the CNN site lists just over 10,000 Facebook "shares" and 413 comments--easily among the top 5 health stories for that website over the past week; over at Fair & Balanced, the numbers were almost identical.
One small problem: it's not really true. Oh, sure, the facts of the story, as reported, are correct: there was a patient infected with HIV, and this same patient now does not appear to have HIV due to a bizarre quirk of cell biology and transplant medicine (more on this shortly). But the truth of the matter is that one patient with HIV became improbably, almost impossibly, lucky, and aside from the scientific curiosity that the case has for the physicians and scientists who study and treat HIV, there's nothing so hugely important in this story that merits a splashy shout-out in the health sections of major news outlets.
The headline does most of the damage: doctors declare cure. The online dictionary Your Dictionary has three separate relevant definitions for the word "cure," which are: a) restoration to health or a sound condition; b) a medicine or treatment for restoring health, remedy; c) a system, method, or course of treating a disease, ailment, etc. In declaring "cure," the German doctors were using the first definition. Technically, it is a perfectly adequate definition. But the reason why the news media ran with the story, and the reason why it's gotten flashed all over the internet in very little time, is because they understood the word "cure" in the latter two senses--that there was some new magical treatment on the horizon for the tens of millions of people infected with the virus. And that is, quite simply, a dream: there's no cure at all. One guy just got very lucky.
This reality did not stop major networks from jumping on the "cure" bandwagon, when its science and health "correspondents" should have known better. Here is CNN's Elizabeth Cohen barely containing her enthusiasm for the story:
It's important to note that the anchor, in framing the story, asks his audience to "listen up" and says that "doctors in Germany claim they may have found a cure for HIV"--which isn't what they claimed at all, and again wildly exaggerates the importance of the story based on that misreading of the word "cure." This is followed by Cohen performing the two-step of noting the facts, but ignoring the meaning those facts have, which is that this is a whole lotta ado about nothing. "This is so fascinating that, even if this isn't the cure for HIV, which it's not, it's still amazing what these doctors in Germany did," she gushes [my emphasis]. What ensues is a lot of back-and-forth graphics reminiscent of Ross Perot's presidential bid. There are, indeed, caveats that lace their way through the discussion, but the overall tone of excitement and optimism is unmistakable.
What makes such enthusiasm unfortunate is that it's a lie. Whether Cohen has deceived herself is unclear, but nevertheless the amount of fake hope generated by such a story is corrosive in at least two ways: it oversells what medicine is capable of, and in doing so helps to promote a backlash against the genuinely amazing things that modern medicine can accomplish.
CNN, to their credit, does make an attempt to contextualize the finding with an opinion piece stressing extreme caution when reading the story. But even here they screw the pooch a bit by throwing up the title "Why HIV advance is not a universal cure." Again, this is remarkably misleading--it's a cure only for one lucky person! A better title might have been, "Why HIV advance is not a cure at all."
What happened with this patient? You can read the articles for details but the quick version is that HIV lives in special immune cells, and this HIV-infected man had a cancer of the immune system. One of the principal ways we treat immune cell cancers is by completely destroying the patient's immune system and transplanting a different person's immune system into the patient (we also sometimes harvest the patient's own immune cells, get rid of the cancerous ones, and transplant them back in after "nuking" the patient's body, which is called an autologous transplant). The person who donated the immune cells to the patient had a special mutation in his immune cells that prevent HIV from entering the cell and setting up house; this donor is literally immune from HIV--part of a very, very small number of people on earth who cannot be infected by the virus.
Anyway, this is the Cliff's Notes explanation. What it misses (and what the news stories largely ignored as well) is that the bone marrow transplant that led to this patient's "cure" is basically a game of Russian roulette, with a high one-year mortality rate, a not-especially-impressive remission rate (it varies depending on the type of immune cell cancer, but they have nearly universally horrible prognoses), and causes unimaginable pain and suffering for the few months before and after the transplant. Even if there were an abundance of similar donors, we'd kill tens of thousands for the iffy chance of having "cured" an equal number. In the age of perfectly adequate HIV drugs--which keep the virus at bay but do not produce "cure" and thus need to be taken for life--this seems like a mad scientist's dream.
Where was the breakdown? Part of it lies at the feet of the German physicians, who might have thought more carefully about the implications of touting cures that simply aren't practical and thus don't really, truly exist. But I'd direct my venom at the health and science editors of the news outlets I've mentioned; there just doesn't seem to be any care taken in investigating this story, and in the case of Elizabeth Cohen's CNN piece, it's worse than that, as she runs away from the more sober implications of the story, even though she is fully aware of such implications, swept up as she is in the wonder of the Modern Medical Miracle. It's tremendously irresponsible journalism. This is a story that nobody should have touched.
Curiously, after seeing the article in a Reuters link at The New York Times, I have been unable to find any other mention of it at the Times website. Here is their page devoted to news on HIV. As of this evening (December 16), they appear not to think of it as worthy of their attention or their readers' attention. I not only concur with them, I applaud their restraint!