With all the media, social media and conversations about this story this artivle By Kenyon Farrow From TheBodyPRO puts everything into perspective and allows us all to understand the implications of this.
March 6, 2019
The headlines went viral in a way most HIV news does not: a second man potentially cured of HIV infection, using a similar process to the one employed over a decade ago in Timothy Brown, the only person to be officially cured. This second man, called the “London patient,” was living with HIV and Hodgkin’s lymphoma; he received a stem cell transplant that so far has put his HIV into remission for the past 18 months.
The research on this case was set to be presented at the 2019 Conference on Retroviruses and Opportunistic Infections (CROI) on March 5, while the full study of the case, published by Nature, was embargoed until that date. But the news was published ahead of the embargo and sent reporters scrambling to get the story out — whether accurately or not.
I was able to speak to Richard Jefferys, the Basic Science, Vaccines, and Cure Project Director of Treatment Action Group, about the significance of the second person seemingly cured of HIV, what both community members and journalists should know about this study, and how HIV cure research stories in the mainstream press can create false hope for people living with HIV.
Kenyon Farrow: The story has now gone viral, and although you’re not involved with the study as a researcher, I know you can explain what happened that has led to the breaking story that a second person seems to have been cured of HIV.Advertisement
Richard Jefferys: I think it’s hopeful news. I think they were fortunate in that it was actually just a coincidence that the match they found for the stem cell transplant was sent from someone with the mutation of the CCR5, so it’s kind of good fortune. But similar to Timothy Brown [the first patient cured], it was related to the individual being in a really serious situation with a refractory Hodgkin’s lymphoma that they’d had a bunch of treatments for that hadn’t worked. So the reason that they needed a stem cell transplant was because they were experiencing a life-threatening cancer. The outcome in terms of the cancer treatment — it worked, and they’re in remission for that.
Then it was some period after quite a long — I think over a year after the successful stem cell transplant and the remission of the cancer — that they got permission to conduct antiretroviral therapy interruption, because the measures that they could do looking for HIV in the blood were all negative and stayed that way.
And then the interruption was done in September 2017. And since then, 18 months, they’ve been off antiretroviral therapy with no sign of any rebound. They’ve done a bunch of testing on the blood. In all the different tests they’ve done, there was one sort of glimmer in one assay of a signal for HIV DNA, and that may well be just a false positive. Timothy Brown had something similar.
So they’re hopeful that this is going to be a similar long-term situation. Timothy Brown is [HIV-free] now for 12 years, but they’re being cautious at the moment and using the term remission rather than saying the individual is cured.
And the other thing is that Timothy Brown is probably one of the most poked and prodded individuals in the history of HIV research. He’s given [a test] where they sort of take billions of cells from you. He’s done lumbar punctures, he’s done gut biopsies, he’s had lymph node biopsies. They’ve done all sorts of tissue sampling for HIV in Timothy that have been negative. So far, this new individual hasn’t had any tissue sampling. But still, the fact that there’s been no viral load rebound is the evidence that hopefully there’s no HIV lingering anywhere that’s actually replicating.
KF: What do you say to people who are just reading this study and don’t follow the latest science? What do you think is the sort of takeaway or what people should consider?
RJ: Since Timothy’s cure, there’s been a lot of work done to see whether it might be possible to do it again. So I think this is really solid justification for those collaborative efforts to provide these kinds of stem cell transplants to people with HIV that really need them for cancer. This is evidence that that work is really worthwhile.
I think unfortunately for people with HIV that don’t have life-threatening cancers that need stem cell transplants, this isn’t a cure that can be applied. You know, there’s been instances in the past where institutions when these kinds of stories get announced, get inundated with calls from people. I think sometimes we underestimate the amount of stigma that’s still out there and the kind of desperation it can drive for people to want to be cured. And it can make it hard to hear what all the caveats are with these kinds of stories. But the mortality associated with stem cell transplant is maybe 10% to 25% of people get a complication and just the transplantation kills them.
So it’s really still a risky procedure that’s only appropriate if someone is facing a life-threatening cancer. Unfortunately, what this news doesn’t mean is that there’s going to be a cure in the next year or two.
KF: What do you say to journalists right now? There are so many stories now, almost all of which were written before the science was even presented. What is your advice to journalists covering HIV cure science?
RJ: You just have to be very careful about how you present results. I think in the Internet era, where clicks on an article can drive revenue, it’s particularly dangerous, and there can be unfortunately a very strong incentive to go with headlines that hype results. We’ve had problems in the past with, I think the Daily Telegraph has been a pretty bad offender a couple of times. One time they went with a headline about how gene editing was going to cure HIV within three years. It took a lot of activism to actually get them to edit that headline, and the damage was kind of already done.
I think it’s just a case of advising journalists to be careful and ethical, to always seek input from independent scientists that haven’t been involved with whatever research they’re trying to write about, and to be aware that people with HIV aren’t some kind of “other,” they’re actually reading their articles. Sometimes you read pieces that seem to imagine that actually nobody with HIV is reading. So they’re sort of talked about in that “those people” kind of way.
Journalists should also know that the hopes of 35-plus million people [living with HIV globally] are riding on this research and they deserve accurate and careful reporting, and to try and be realistic about what’s going on.
Kenyon Farrow is the senior editor of TheBody.com and TheBodyPRO.com.