(left) Bruce Richman, co-founder of Prevention Access Campaign, with longtime HIV/AIDS activist Professor Carrie Foote, Indiana University-Purdue University; Head of HIV Modernization Movement
Bob Leahy: Bruce thank you for talking to PositiveLite.com. Tell me first of all why you are driven to do this work.
Bruce Richman: Well I was diagnosed with HIV in 2003 and I’ve experienced the impact of stigma and discrimination for many years and in many different ways, but not as much as others. And I’ve come to realize that a lot of the information that is presented about us is often inaccurate and not up to date with current science. It’s based on many, many years of entrenched stigma and all kinds of phobias and sex negativity against people with HIV. People living with HIV and the field deserve accurate information
Yes and I think what’s remarkable about this campaign is that it’s coming from the poz community itself rather than from the prevention community. So I guess my question is why do you think aren’t we often hearing this undetectable = Uninfectious message from them or, say, our doctors?
Well, we have had landmark studies like HPTN 052 and PARTNER and since 2008 we’ve had the pioneering Swiss Statement but in communicating the results to us, that’s where it gets watered down, and that’s where stigma and phobias and politics start to shape the way those results are communicated to the public. For example, if you look at the PARTNER study, you can see in the press release editorial that they are highly cautionary and highly politicized because the results essentially tell us that people who are undetectable can have sex with people who are negative without condoms, without transmitting the virus. That’s a very big social, cultural, mental step to make. So of course communications about it are going to be influenced by politics and public health concerns.
Two main concerns we have heard from the highest levels are that when people realize that they can’t transmit HIV they will have lots of condomless sex with people and that there will be an uncontrolled rise in other STIs. Or people with HIV won’t understand that to stay undetectable we must stay on treatment. If we take a treatment holiday by choice or circumstances out of our control, then we won’t realize we’re risking a viral rebound.
So while we are talking about that, what’s your response to the STI issue? I means it’s raised even by people living with HIV too who are undetectable.
Well, condomless sex is a personal choice. We’re giving people information that’s accurate so that they can make a choice for themselves as to the options they would like to use to prevent HIV as well as STIs and pregnancy. We are very clear in our communications that having an undetectable viral load doesn’t prevent STIs or pregnancy. So we are not advocating condomless sex in any sense; what we are advocating is accurate information. It’s not ethical to withhold this very important news because of an assumption that there may be a rise in STIs, for instance.
So is something else going on here? I mean traditionally attitudes negating barebacking and “more sex” have been driven by sex negativity, with sex always something to be warned about and cautioned about, no?
Of course. A lot of the resistance and attacks are driven by sex negativity, from the view point, often even subconscious, that condomless sex between men is something that’s unnatural and unhealthy.
But there are still many righteous negative men and righteous positive men who seem to feel barebacking is what “sluts” do and that the responsible people amongst us don’t do that kind of thing.
Right, but let’s just hope that they are not making policies for everyone . . .
But we have had 30 years of saying to gay men that barebacking or having lots of sex isn’t very healthy. I sense that we haven’t collectively set our minds around the fact that condomless sex can be safe as well as healthy and empowering.
Yes, so we come from a place of trying to fully change the narrative around sex positivity to help people realize that sex without condoms between men can be a wonderful and healthy thing - and just as valid as heterosexual sex. But we are approaching it by promoting the science, pushing through the stigma and the politics. If you approach policy makers from the perspective of “sex between people who have and don’t have HIV is wonderful and healthy” people are so repressed and serophobic in this country, it’s less likely to get anything done
So are you finding that people are being surprised that if people are undetectable they are not infectious? I mean we have has the Swiss Statement going back to 2008 and then HPTN 052 and PARTNER all pointing to this.
And Opposites Attract in Australia. There’s a large scale study from UCLA that showed only 18% of people in the U.S. who are undetectable realize they’re not infectious. They’re not hearing the right messages from the HIV communications agencies. And we’ve been finding that even with medical providers who know the science they are selective about who they choose to tell it to. If they feel their patients are “responsible” they will tell them. But many don’t know the science, so patients are not getting the information at all.
Or they have it wrong. You have been coming up with instances where medical practitioners misstate the science. I’ve seen some sources do that too.
And the information is very confusing online. You have some agencies saying that undetectable is still a risk while the more progressive NGOs like Terrence Higgins Trust are clear that people with HIV who have an undetectable viral load cannot transmit HIV on to their partners with or without a condoms. But we are still hearing from a lot of places “there is still a risk, there is still a risk”. .
Well let’s look at what Canadian agencies are saying. I looked up what our largest AIDS Service Organization agency says about undetectable viral load, AIDS Committee of Toronto (ACT) and I’m going to read it for you for your reaction. “Advances in HIV treatment options mean that HIV-positive people can live long and healthy lives. Research has shown that these same treatments mean that poz folks can lead active, healthy sex lives, without fear of HIV transmission to their HIV-negative partners” That’s good right?
But here is what they say next. “Viral load testing looks at blood, but HIV is found in other fluids as well (semen, rectal fluids, vaginal or frontal fluids). There is a chance that viral load could be higher in those fluids. Having a Sexually Transmitted Infection (STI), like syphilis, gonorrhea, chlamydia or herpes, can increase the risk of transmission. If you or your partner has an STI (or symptoms), consider using a condom or waiting until the STI treatment is completed.” So they have put out a good message one can't fault but then seem to revert to the business of warning people about hypothetical risk.
(Editor's note: AIDS Committee of Toronto have since advised they are reviewing their position in light of recent advances in science.)
It’s the business of fear. And it keeps people slightly afraid of people with HIV. The message they are giving is “just be careful not to give up condoms.” We are vectors of disease to be controlled and contained by the medical establishment and public health. But we know from research that STIs and transient viral blips are not a factor in increasing risk of transmission when the viral load is otherwise undetectable. The PARTNER study said the same thing.
I’ve been arguing for years that the semen issue is a theoretical risk only. There is absolutely no evidence that it is any real risk. And PARTNER proved that. And PARTNER takes care of both caveats – so why do agencies keep using them?
I hear these phony arguments and groundless attacks every day, my favorite one is that I am a danger to public health?”
OK let’s move on. There is a bit of an elephant in the room with your campaign in that some people will just not agree that Undetectable = Uninfectious when experts mostly use different language: they refer to very small risk, tiny risk, but they won’t say that it’s zero. What’s your position on that?
Our consensus statement is based on "negligible" risk. (Dictionary definition of negligible: “so small or unimportant as to be not worth considering: insignificant”) So we have come up with a slogan or statement that’s easy for people to understand. And there’s precedent - as early as 2013, the Chief Medical Office of England used the phrase “not infectious.” It works. We can say there is effectively zero risk. However, science can never prove zero risk and we don’t expect people with HIV to wait literally forever to be considered uninfectious to others. There has to be a line drawn, and we’re helping people to pay attention to real world and clinical science that concludes it's negligible risk and to be ethical and bold enough to say it.
But a negligible risk for the extremely risk-averse is enough for them to put up red flags and they would maybe regard undetectable as not equal to uninfectious. What’s your take on that?
We are here to present information and people can make their own informed decisions based on their own level of comfort. Negligible means that the risk is not worth taking into consideration, so we’re doing that - we’re not taking it into consideration in our messaging. If some people want to take the risk into consideration, that’s their choice. The CDC’s “negligible risk” category includes spitting, throwing body fluids and sharing sex toys. Would you say there’s still a risk from spitting?
Some people will cross the road which is something they might get killed in doing but they won’t do something that in 333 years of having sex repeatedly may or may not theoretically result in transmission of a treatable infection.
Yes and I think that some of the rejection of science we see comes from a desire to keep HIV-positive people in a box, kind of separated from normal engagement. Some people will always look at us as a risk.
I sometimes use the term “damaged goods”, Bruce, and it’s sometimes difficult to turn the perception of damaged goods into something that’s whole and healthy. But we have been talking a lot about the impact of undetectable on sexual options but isn’t reaching undetectable far more than that and something that is highly valuable from multiple perspectives?
Yes and there’s much more. There’s reproductive freedom. I’ve heard from heterosexual couples who didn’t know they could have babies naturally. There’s the freedom from decades of stigma and the fear of being a danger to our partners. This changes the perception of people with HIV and our perceptions of ourselves and, at the same time, strengthens prevention efforts at every level while supporting the defense against criminalization laws. Ending stigma is the greatest challenge to ending the epidemic. So this is incredibly valuable information that it is absolutely essential to get across.
I agree. So then the logical extension of this campaign is that more HIV-positive people will realize the benefits of being undetectable and will want to go on treatment or get to undetectable if they are not there yet. So what has to happen? Are you dealing with access to treatment issues also, for example?
Well information is power. The science is real. Treatment is an effective prevention strategy and we need to raise awareness about the dual benefits of going on treatment. We need to be clear that not everyone will get to undetectable levels due to their choice or circumstances not within their control, so it’s important to note that even when the viral load is detectable, the virus is still relatively difficult to get and not always transmitted. We’re fortunate that this is a grass-roots effort among a large list of community partners, activists and networks of people living with HIV who work with marginalized populations, who are helping share the knowledge with people who don’t always have good access to information, access to the internet or even medical professionals.
Ok, one final question. Looking at your campaign strategy I’m intrigued by the concept of “accuracy watchdogs”. We haven’t had that before.
Yes, it’s been bothering me that as I’ve been collecting information about undetectable as well as PrEP (the other program area of PAC run by John Byrne –founder of RawStory.com) over the past few years I’ve been noticing mistakes. For example the study that is often misquoted is HPTN 052 which reported that people who started treatment early lowered the risk of transmission by 96%. But many people quote that as relating to people who are undetectable. It’s not. Another example is that four months ago based on that same study my doctor told me that he didn’t support the Undetectable = Uninfectious campaign because there is 96% risk reduction so there is still a 4% chance of transmission. Of course that’s wrong. First the number doesn’t even apply to people who are undetectable, just people on early treatment as I just explained. Second, the 96% figure is a reduction in risk which is already very small. It’s pretty disappointing, but it’s a common mistake. We don’t want people who are undetectable being represented as a 4% risk! Our Accuracy Watchdog launches later this month to monitor the media and suggest corrections to the massive amount of inaccurate, outdated HIV prevention information.
Right. Very annoying. Bruce I have to congratulate you on the work you are doing. Keep it up - and thank you for talking to PositiveLite.com.
About Bruce: Bruce Richman is the founder of Inspired Philanthropy Group. His primary focus at PAC is on the dual benefits of treatment for the health of people living with HIV and their sexual partners. He has worked in global philanthropy for over two decades developing interventions, fundraising and social marketing campaigns on a range of issues including HIV stigma and prevention, sustainable development, childhood obesity, violence prevention, gang intervention, and empowerment of girls and women with people and brands with extensive public platforms including Donna Karan, Ellen DeGeneres, Archbishop Desmond Tutu, NBA star Chris Bosh, NFL star Adrian Peterson, NBA star Paul Pierce, Grammy Winner Chris Brown, Banana Republic, Sephora and Cartier. He serves as a faculty member in the sports philanthropy program at the George Washington University School of Business, and as board member of The Generations Project. He has been living with HIV since 2003, and has been undetectable since 2010. Since learning from his doctor in 2012 that because he was undetectable he could not transmit the virus, Bruce has been committed to sharing this knowledge with others in the hope that people with HIV and their partners will live healthy sexual and reproductive lives free of fear and stigma. He received both his Master’s in Education and law degree from Harvard University.