Image detail from AIDES France Révélation campaign about being undetectable.
“We are not dirty, we are not a threat, and we are not disease vectors. In fact, we are the solution. People living with HIV who achieve viral suppression, who become undetectable, are the solution to the end of new HIV infections in the United States… When we look back 20 years from now we’re going to judge ourselves in terms of how well we responded to this opportunity.”
— Dr. Rich Wolitski, person living with HIV and Acting Director for the Office for HIV/AIDS and Infectious Disease Policy at the U.S. Department of Health and Human Services
When Dr. Wolitski delivered his speech at the closing plenary of the 2016 United States Conference on AIDS (USCA), he received a standing ovation. He was referring to this year’s newest findings of HPTN 052 and the PARTNER study, which showed that people living with HIV who are undetectable are not transmitting the virus to their negative partners.
How wonderful that something many of us have assumed for years has been proven to be true. So now we can spread the news and encourage people with HIV to seek treatment and stick with it. And hey, there’s nothing like a little intercourse a la natural with your partner to reward yourself for being undetectable, am I right?
Not so fast. There is some strong resistance to a message that equates undetectable to untransmittable, and it’s not coming from where you might think.
Here are five reasons why this breakthrough message matters.
1. The science is solid.
The PARTNER Study has recorded 58,000 acts of penetrative sex without condoms between 1,000 positive/negative couples, in which the HIV positive partner had an undetectable viral load. There were no infections between the couples. Not a single one. The same results were reported in the HPTN 052 study and the empirical evidence to date. As Dr. Wolitiski said in his USCA speech, “this is a game-changing moment in the history of the HIV epidemic.”
Resistance to the conclusion that undetectable people pose no risk of infection has been either a matter of scientific data scrutiny or a fear that people may not actually be undetectable when they think they are. Let’s break that down.
A review of the argument against saying “zero risk” is enough to make you cross-eyed. It is based on the premise that nothing, really, is without risk. Detractors of the non-infectious message will calmly explain the perils of placing any risk at zero and then hypnotize you with statistical origami. Suffice it to say that proving zero risk is statistically impossible. You risked electrocution by turning on your device to read this article.
There will always be somebody who claims a terminally unique HIV infection, even if the precise circumstances of their claim may be murky. Weird things happen. Some folks are convinced that people who drink alcohol sometimes spontaneously combust. But you don’t see warning labels about it slapped on every bottle of Wild Turkey by overzealous worrywarts.
And yes, there is the possibility that someone might develop a viral load if they are not adherent to treatment and then transmit the virus. But the message here is that people who are undetectable cannot transmit HIV. If you stay on treatment and are undetectable you will not transmit HIV. Can we please celebrate this simple fact without remote qualifiers?
It is also important to note that a Canadian consensus statement concluded that any “viral blips” or sexually transmitted infections (STIs) were “not significant” to HIV transmission when someone is undetectable.
2. Major health experts are on board (but not all community leaders).
Public health leaders, from the New York Department of Health to the National Institutes of Health (NIH), have embraced these findings and its meaning to people with HIV, while community advocates and organizations have been reluctant to get on board, citing a theoretical risk of infection. Or maybe they consider changing their fact sheets and web sites an enormous bother.
Bruce Richman of Prevention Access Campaign. (Sean Black / Courtesy A&U Magazine)
The Prevention Action Campaign and their seminal message “U=U” (undetectable equals untransmittable) was founded on the energetic efforts of a man named Bruce Richman. He entered the HIV advocacy scene a few years ago, seemingly out of nowhere, carrying aloft the banner of undetectability. Richman gathered signatures of health experts the world over for a consensus statement about the research, while cajoling every U.S. HIV organization in sight to adopt language that removes the stigma of infectiousness from people who are undetectable.
My review of the web sites and statements from major HIV organizations includes no strong language about undetectable people not transmitting HIV. Worse, some exaggerate the risk from those who are undetectable. How could such a new research breakthrough be met with such ignorance and apathy by our own leaders? I will defer shaming anyone by name while they take a little time to update their official language. (Notable exceptions to this sad rule include work going on in the United Kingdom and France that flatly states that undetectable means non-infectious.)
This skepticism from our own community reduces people with HIV, again, to a problem that must be managed. It suggests that those of us who have achieved undetectability don’t have the judgment to keep taking our medications or to see our physician regularly to be sure our treatment plan is still effective. It keeps us in the role of untrustworthy victims unable to make decisions that will keep the rest of you safe from us. What infuriating, stigmatizing nonsense.
3. This is about HIV. Only HIV.
Auxiliary issues often creep into this debate that may be well-meaning but only muddy the waters, such as the fear that promoting the message of non-infectiousness will lead to more sexually transmitted infections (STIs) because of the freedom it allows (see also: critics of PrEP, the birth control pill, and any other vehicle that might lead to unbridled sexual pleasure).
Rates of STIs — which were on the rise before the advent of PrEP or news from the PARTNER Study — are deeply concerning but ultimately tangential. We are in desperate need of comprehensive sexual health programs, to be sure, but in this instance I feel compelled to “kill the alligator closest to the boat.” This is about being HIV undetectable, not syphilis impermeable. Being undetectable will not prevent other infections or address promiscuity or remove stubborn stains.
Advocates are also sensitive to the continued compartmentalization of our community, between those who are positive or not, who is on PrEP or not, and now, between those with HIV who are able to achieve viral suppression and those who cannot, despite their best efforts. I sympathize with this new divide among HIV positive people but believe the greater good – removing shame and stigma from those who are not capable of transmitting – shouldn’t be downplayed. All HIV positive people of good will can and should celebrate this development, regardless of their own viral load.
4. This is a major victory for HIV criminalization reform.
Terribly important work is being done to repeal and reform HIV criminalization laws that prosecute people with HIV for not disclosing their status to a sexual partner. Our defense is often led by all of this growing science showing that the defendant never posed a risk to their partner in the first place, due to their use of protection or the fact the defendant was undetectable and therefore rendered harmless.
Continued assertions that undetectable people might pose a risk to others could be used in the courtroom against people with HIV. Imagine the glee with which prosecutors might explain to a jury that “zero risk” is impossible and defendant Joe Positive posed a threat, however small, to his sexual partner and should be jailed for it. Put obscure doubts into the heads of a jury, and another person with HIV gets a 30-year sentence for daring to have sex at all.
5. This profoundly changes how people with HIV view themselves.
Internalizing the fact that I cannot transmit HIV to anyone has had an effect on me that is difficult to describe. I can only liken it to the day the Supreme Court voted for marriage equality. Intellectually, I knew I was a gay man and a worthy human being. But on the day of the court’s decision I walked through the streets of my neighborhood with my head held higher. Something had changed. I felt whole.
In my thirty-five years living with HIV, I have never felt exactly that way. I deserve to. And so do millions of other people with HIV.
Of all the arguments to adopt the message that undetectable people cannot transmit HIV, that enhanced feeling of self-worth may be the most important reason of them all.
Mark
(And now, only days after the posting of this piece, Housing Works has become the first HIV organization in the U.S. to come out explicitly with a #UequalsU message. It is just the kind of leadership I have come to expect from Housing Works.)
ALSO…
Have you seen the My Fabulous Disease Holiday Spectacular? I love to share it each year, just like the Grinch and Charlie Brown television specials. Not only does this video blog have Santa and cookies and even a touch of drag, it introduces you to most of my family, who discuss candidly what it has been like to love someone living with HIV. You’ll laugh, you’ll cry, it’s like a warm visit home. Check it out on Youtube here.
Mark, I know you mean well. And you have put out many sincere and useful blogs, particularly when you focus on your feelings or call on genuine sources of information, but you are lost when it comes to basic science. There are over 140 different statistics to be gleaned from the PARTNER and similar studies, NONE of which is “undetectable means zero risk.” This is idiot shorthand for, say, a real quote: “But it is important to keep in mind that, as presenter Alison Rodger said at the 21st International AIDS Conference (2016), zero transmissions means that “the estimated rate of transmission is zero”. And that ESTIMATE, by the way, is currently at 0.3%. Do you see the difference? Please understand this: Statistics are group measurements intended for samples, not individuals. They possess absolutely no validity when applied to individuals. As often happens with people lacking solid knowledge of biology (HIV virology in particular)and the ability to comprehend or validly interpret the conclusions of the original studies you go to unsupported opinion and sources for your knowledge. The result of this is a five-part conspiracy theory akin to the one you chose to reference: a thoroughly specious, pathophysiologically impossible and long debunked piece of nonsense called “spontaneous human combustion” (your link should have told you that; a website that advises going to Thailand for alcohol treatment is akin to sending money to that Nigerian “prince” who writes those begging emails or paying the psychic around the corner for “telling” your future. I know a lot of people are going to buy into this now due to your building so high upon several false premises. It’s too bad.
I’m sure you will have continued success with your blog. Thank you for all the help you have been and will be in future to the GLBT and HIV communities.
(We disagree. You contend the research cannot prove zero risk; I contend nothing is zero risk and 58,000 sex acts without transmission is good enough for me. You quote Allison, while I references public health experts from NIH and NYC Department of Health and the dozens more who signed the consensus statement. I’ll let the rest of the piece speak for itself. But you’re right about spontaneous combustion! I’ll have to re-phrase that. — Mark)
P Kimball for someone so concerned with accuracy, you’re inaccurate on two parts.
1) Alison Rodgers didn’t estimate zero in 2016, she said that back in 2014. http://www.aidsmap.com/No-one-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-HIV-in-first-two-years-of-PARTNER-study/page/2832748 “When asked what the study tells us about the chance of someone with an undetectable viral load transmitting HIV, presenter Alison Rodger said: “Our best estimate is it’s zero.”
2) You refer only to the PARTNER study, but this isn’t just based on PARTNER. Did you read Mark’s article? The article notes that conclusion on risk was based on all the studies and empirical evidence, not just PARTNER. So why not spiral down your statistical mindf@ck on HPTN 052 and the empirical evidence?
Mark I think it’s generous that you responded to his arrogant, caustic and stigmatizing comment. I don’t feel it’s worth responding to people who clearly get facts wrong in their argument, do not understand or didn’t read the article they’re attacking, and who are so arrogant they think they know better than the head of NIAID at NIH, and medical and public health authorities in England and France.
” … to be gleaned from the PARTNER and similar studies …” is what I wrote. I guessed you overlooked it. Also, the quote from Ms. Rodgers is accurate, from this year’s international conference; I have a tape of it. The previous rate of transmission, which may be what you are thinking of (she also reported on that), was logged at 0.5%. It’s a measure of the number of results, not of HIV per se. Both numbers are estimates of zero. For various reasons, the PARTNER study is the definitive one for this subject. Because the actual risk was zero, it doesn’t mean this upper risk is an actual risk. Perhaps this will help: As the study accumulated larger numbers of couple-years in follow-up without transmissions this risk became closer and closer to zero. Even if there were no transmissions with a study twice as large and for twice as long, the number never reaches zero.
I deliberately did not want to get into that because I realize it is confusing (the proof: you seem to think I am in disagreement with the authorities you mention … though you might not be surprised to know there is considerable disagreement among them, primarily due to politics. Dealing with a popular zero-zilch-nada is useless for making arguments, extrapolations or conclusions in this case. That’s why headlines are so misleading. In brief, as Mark suggested: there is no such thing as zero OR for that matter, “100%” in speaking of our health. We can only go by estimates; we live – and die – by them. You, and Mark, missed my point entirely. I wasn’t disagreeing with the celebration or the advice. My fault. Risking further accusations of arrogance and whatever else you laid on me, I will be direct and final: If you are not reporting on the studies themselves but just translating others’ interpretations of the data into advice, take the ideas and run with them and leave the numbers behind.In the case of Undetectable/Untransmissible Mark’s #4 is legally and politically hung up on those numbers (the ones that can never guarantee zero), but his #5 is the kind of message that overrides all argument and makes this blog the stand-out it is.
That’s it for me. I have to go now and flagellate my arrogant self by finishing updates to an HIV counselor training manual without drowning in the latest studies, symposia lectures and ugh, statistics, none of which will be inflicted naked upon the trainees.
‘his #5 is the kind of message that overrides all argument’
Oh dear – the mask just slipped there. Up until that point we were having a solid scientific argument about objective facts, or at least statistics. But now it is claimed that because it is liberating, this ‘overrides all arguments’. That’s NOT a wise comment – it’s arguing what we want to believe is true over what IS true.
(Or, might I suggest, that both things are true. People with HIV who are undetectable are not transmitting the virus, AND this has a profound effect on how we view ourselves. These five points cover both the science and the emotional well-being of people with HIV. They needn’t be at odds. — Mark)
As a gay man my “wholeness” doesn’t depend on anyone I could marry or not. So I don’t see #5 as valid argument. It’s fine if it helps Mark but it’s nothing than a very personal point.
Besides we have
http://www.intmedpress.com/servefile.cfm?suid=8be42e39-7915-4b36-929c-0f1a603e989e
and another possible case of HIV transmission under ART between MSM:
http://journals.lww.com/aidsonline/Abstract/2010/07170/Determinants_of_HIV
_1_transmission_in_men_who_have.15.aspx
Neverthelese these 2 cases would be well inside the 95% CI of the PARTNER study considering the rareness of such reports for ARV-treated MSM in the literature.
(Wow. Behold, the privilege in this comment! My self-worth, and that of those living with HIV, is “nothing than a very personal point.” How nice for you, that you don’t need marriage equality to feel better about yourself (easy to say, now that we have it). Your cowardly, anonymous comment betrays your claims of self-worth, dear. The profound change for people with HIV themselves that I describe means “nothing?” We should all be as self-realized and, dare I say, as HIV negative as you. [P.S. Your outdated links are from 2008 and 2010, respectively, which is light years from what we know now to be true. Please do try to keep up.] — Mark)
Mark thank you for this brilliant piece. Wanted to jump in, and then I’m out!
Hello “anyone” and Ender,
#5 is inextricably tied to the healthy social, sexual, and reproductive lives of people with HIV. It also affects treatment uptake and adherence, which affects prevention. #5 is a valid reason to communicate the already proven (see #1, #2) message.
“Anyone”, You’ve cited the Frankfurt Case, a report from almost 9 years ago of a transmission which may have occurred even before the HIV+ partner was on treatment. “The Frankfurt case involved a couple with documented transmission, but transmission during the time before or shortly after treatment initiation in the index case could not be ruled out.” Vernazza PL, Bernard EJ. HIV is not transmitted under fully suppressive therapy: The Swiss Statement – eight years later Swiss Med Weekly 2016; http://www.smw.ch/content/smw-2016-14246/.
What’s important is that there were no transmissions in any of the studies and no verifiable reports – ever.
More generally to whomever is reading:
Mark’s article is based on current science, sources, and conclusions from the world’s leading experts this subject. These aren’t just any experts, these are literally the world’s experts on the sexual transmission of HIV.
This is dramatically new information for many. It’s cognitive dissonance. We need to move past thirty-five years of deep-seated fear of HIV/AIDS and people with HIV. It goes against everything most of us have heard and felt about HIV/AIDS since we first learned about it. And, for many, it’s difficult to process this new information through the lens of personal trauma and experience.
It’s mind boggling and often disheartening to see the lengths to which people will go to disprove this new reality. For some of these folks, I hope they ask themselves: “Why am I invested in keeping people with HIV a risk?”
I’d like to request that if you intend to counter the message with assertions of “fact”, please be sure you’re informed by up to date and accurate sources. It’s harmful to exaggerate the “risk” from human beings. It’s ridiculous that I often need to point that out.
Best,
Bruce
SOURCES (the consensus statement, FAQ, expert quotes/explanations,sources) http://www.preventionaccess.org/undetectable
As always, informative and reflective of your personal experiences, which makes the content more directly relevant. And side note: the phrase “statistical origami” is an awesome phrase.
(Thank you! As another writer, you know the pleasure of conjuring a fun phrase that fits just right. Once that one came to me, I could hardly finish the piece fast enough! — Mark)