Welp, I cant blame this one on pop news.
The latest controversy over the HIV-1 patient functionally cured of HIV/AIDS shouldnt be that big of a deal. Scientists are asking the question "What does it mean to be 'cured' of HIV? What is our definition of 'cured'? How will we know 'cured' when we see it?"
Those are actually damn good questions. HIV-1 can infect cells and remain dormant for years and years and years. You might *think* the virus is gone, but it really isnt. Its just hiding. Or, maybe those 'hiding' viruses are stuck, and finding them doesnt mean the person is at risk of getting sick or transmitting. You might give someone radiation/chemo in an attempt to kill all the HIV infected cells, but youre still going to miss some hidden deep within tissues like the brain-- Do these reservoirs really have an impact on anything? Do they randomly spit out virus, keeping antibody levels up, while the viruses are functionally useless-- unable to infect anything in a deltaCCR5 patient? Could these viral 'burps' be enough to transmit to a non-deltaCCR5 recipient?
Lots of really cool questions can be asked and answered with The Berlin Patient, and he is up for playing guinea pig.
For his part, Brown says he'll continue to be a guinea pig for as long as it takes if he can help resolve that big question.
"Hopefully one day I won't have to do it anymore," he says, because he'll just be one of many cured patients. "That would be nice."
I dont think there will be any more people like Brown for some time, but thats still a very sweet sentiment.
So apparently several labs have tried to see what is going on in The Berlin Patient. Is HIV still there? Is it still infectious? And so on. Most of them cant find jack squat. A couple found echoes of HIV-1 infection-- antibodies (low levels that faded), HIV-1 DNA (maybe infected cells are still there), and occasionally, viral RNA. Maybe impotent viral burps.
But again, most of them couldnt find jack squat. If you are finding something that no one else is finding, and you have to go through elaborate processes to find it, youre probably 'finding' contamination.
Everybody remember XMRV? Remember what caused the entire XMRV fiasco?
HIV labs doing extremely sensitive PCR on putative 'HIV samples' might be able to 'find' HIV... that has nothing to do with The Berlin Patient. In the absence of concordant results from other laboratories, extremely low levels of viral RNA/DNA *must* be considered contamination. Especially when, apparently, the 'sequences' the positive labs found dont look like the HIV sequences found in the patient 6 years ago.
And at this point, nothing has been published. This has just been discussed at a recent HIV conference. I mean, its kind of interesting to me, but this isnt normally a topic I would talk about on ERV at this time.
But here we are.
This unpublished kind of esoteric data is currently in the middle of some media drama.
And not because of terrible science journalism.
But new research presented on 8 June at the International Workshop on HIV & Hepatitis Virus "challenge[s] these results," asserts Alain Lafeuillade of the General Hospital in Toulon, France, a well known HIV/AIDS cure researcher. Lafeuillade issued a press release, "The So Called HIV Cured 'Berlin' Patient Still Has Detectable HIV in His Body," that questions whether Brown was reinfected and may still be infectious to other people.
"It's not the case, but people are spreading it," Brown says. "That concerns me because I've been told by many people that I give them hope — people who have HIV. And that's what I want to do. I want to be able to continue spreading my message and be able to do that without having conflicts of people who are misinterpreting the truth."
Brown is particularly upset at suggestions that he has become reinfected with HIV through unsafe sex. "That is not the case," he says. "It's very difficult for me to listen to those things and read those things."
Pop news, from HuffPo to Fox News are all over 'THE CURED HIV PATIENT ISNT CURED!!!' now. Not just spreading the 'hes not cured' meme, but also 'the luckiest guy on planet earth (dude cured of HIV/AIDS) went and got himself reinfected'.
While both claims are theoretically possible, there is no real evidence for either of those claims. Like the XMRV fiasco-- the 'positives' need to be 1) compared to known HIV sequences to see if contamination makes sense and 2) replicated in other laboratories. I do not know if #1 has been done, but #2 has. Replication efforts have *failed*, which doesnt make 'still infected' or 'reinfected' particularly attractive conclusions.
'Isnt cured'/'Reinfected' are also conclusions that the authors/participants of the actual study do not agree with.
The scientists who conducted the new study strongly object to Lafeuillade's interpretation of their results.
Naturally, those scientists are extremely annoyed with Lafeuillades antics.
It looks like it is not allowed in our free scientific world to ask questions that people refuse to answer or even discuss. It also looks like there is kind of unique thinking that prevails. It is not my conception of progress. I can understand the disappointed reaction of patients' advocates that truly beliewe -like me- on the hope of an HIV cure in a near future; I cannot understand the quite past Sovietic approach of scientists that claim I misinterpreted their confusing data...
There is nothing wrong about 'speculating'. Every scientist does it every time they read a paper. Every time they are chatting with a colleague. Especially when they are chatting with each other at conferences. However, its generally considered to be bad form to talk about research presented at conferences (it is usually preliminary) on a blog-- I wouldnt do it. But unless you signed a confidentiality agreement, there is nothing wrong with saying reasonable or outlandish things on a blog either.
But Lafeuillade didnt just speculate on a blog. Homeboy wrote a friggen PRESS RELEASE about SOMEONE ELSES UNPUBLISHED DATA.
WHO DOES THAT???
Its not fair. Lafeuillade took away the right those scientists had to do the experiments they wanted to do, they way they wanted to do them, in as much time as they needed, to formulate their own conclusions, and present that data to the scientific community via a publication, or to the public via their OWN press release. Instead, Lafeuillades claims are making them defend themselves and their work, and they arent even done with the research yet. The actual publication might be years away. Id be pissed off if I were them too.
And thats not even mentioning the personal distress Lafeullades claims must be causing The Berlin Guy. Cruel, dead cold wording in that 'press release':
... these results as they showed persistence of low levels of HIV viremia in this patient, and HIV DNA in his rectal cells.
... these data also raise the possibility that the patient has been reinfected.
... More studies are in progress to know if this seronegative HIV individual can infect other subjects if he has unsafe sex.
Pretty sure you just got yourself b8 from future HIV conferences, dude, and its got nothing to do with the Soviets.
Crazy story. I believe there are a couple of approved protocols to repeat this "experiment" with very small groups of patients that have been approved and will begin in the next year or two. Hopefully we will get some concrete answers.
Mango, these are "one-of" experiments. There are all sorts of idiosyncratic differences between individuals, genomes, virus strains, tissue compartments, immune systems, PCR reagents, the phase of the moon, and gravitational effects from Uranus. It will be a long time (if ever) before this is fully understood.
This is a side-show as far as a treatment or preventative for HIV is concerned. People who understand the science know that. It is extremely useful research that tells us a lot of things we didn't know before, but many of the questions that it might provide answers to are not even known yet because not enough it known to know what questions to even ask.
The Berlin Patient is publicly identified, and has been extremely generous in allowing research to be done on him. He could decide he doesn't like the bad press he is getting by having speculation that he re-infected himself bandied about by researchers who should know better. The HIV research community could be deprived of this unique and extremely valuable resource because of the dickish activities of someone not involved in the research.
The “questions” that this guy brings up are not profound. They are obvious questions that can only be answered by more research. Research that requires the cooperation of a single, individual, vulnerable (and now upset and distressed) human being.
Researchers who don't have access to that unique resource are unable to do research using it. If I was inclined to speculate as to his motives, I might speculate that he was trying to put stuff in the media so that the Berlin Patient would refuse to cooperate with researchers. Why? Something along the lines of the “sour-grapes” and “dog-in-the-manger” metaphors. He doesn't have access, so he denigrates the value of the research done by those who do have access and suggests that someone else could do it better. Based on what? On research that hasn't been done or published yet, aka his ego.
The HIV patient community is already hounded by quacks and scam artists pushing things like MMS (aka sodium chlorite), and already subjected to discrimination, bigotry and prejudice. Speculating that the Berlin Patient got himself re-infected reinforces many of the prejudicial stereotypes. My understanding is that reinfection would be much more difficult than reemergence of the strain he was already infected with because he doesn't have the immune cells that get infected and make virus of any strain.
Right now, the only way to deal with HIV is with prevention, but the bigots don't want to do that because it helps those they are bigoted against. That is why the US didn't fund research early on, because it was a “gay disease”. The Catholic Church doesn't want condoms to prevent HIV because they are bigoted against people who have sex outside of their “church-marriage-sanctioned” and “for-reproductive-purposes-only” rules. Reinforcing stereotypes against people with HIV that bigots use to justify their bigoted behaviors are not helping.
Prevention doesn't have a high priority, especially if it is for a social group that leaders are bigoted against. That is why France didn't institute blood testing until they had a France-generated-testing protocol. That is why an estimate 4,000 hemophiliacs in France got infected product.
I'm so overwhelmed by the response to this post that I could suffer a myocardial infarction (code for heart attack). If you don't mind I'll just have to take them one at a time. Must be the enormous enthusiasm in the 'scientific' community for DIY cures, even if it's just for the warm inner glow and no dough. Mind you it could be that technology has replaced molecular biology.