Why some organizations are slow to adopt the undetectable=uninfectious message

Lately on PositiveLite.com there has been quite a bit of buzz about the PARTNER study - not only about its fantastic findings, but also about the HIV organisations who are slow to acknowledge the full implications of the results. There is even a campaign - Prevention Access Campaign's Undetectable = Uninfectious -  to change this.

Recommended reading on the topic has to include ‘Will HIV Ever Be Safe Enough For You’ which is one of my new favourite blog posts by Mark S. King, who hit the nail on the head in every respect.

Luckily for me, I proudly work for Terrence Higgins Trust which confidently announced after the findings of the PARTNER study that a person with an undetectable viral load is not infectious. Imagine my (relative) surprise when, after reading articles on PositiveLite,com,  I learned that this is not the case among all organisations back in my home continent.

In this blog post, I’m going to propose some theories about why HIV organisations and educators themselves might be slow to disseminate this information to the public.

The gap between science and practice

One of the fundamental challenges that an HIV educator has is figuring out how to communicate scientific information to the public in a way that is understandable, relatable, and most importantly, actionable. Any person seeking out information from an HIV organisation, whether they are HIV positive or negative, a person at risk or not, a service user or a professional delivering services, they all want to know one thing: What should I do next?

People want to know, What do I do differently – in my work, my relationship, my sex life? What do I tell my client? My partner? Do I use a condom? Do I get an HIV test? What do I do?

We have to think about this question. It’s too easy to get caught up in simply regurgitating scientific information without pausing to think about how the information will be used. We think about ourselves. What we want is to be delivering information that is holistic and accurate. But holistic and accurate is not enough. We have to consider the purpose that information is serving and how we can tailor the information we are giving to the person. We need to think about how that information is being used for health promotion purposes, rather than purely scientific interest.

As educators we cannot just be a direct link between the general public and the scientific community. It is our responsibility not only to digest this information, simplify it, put it into lay language and spit it out again. It is our responsibility to help people learn how to act on that information.

We don’t really understand science.

I’m going out on a limb here, but I think one of the reasons that organisations hold back from giving confident messages about what is safe and what is not is because we take our cue from the scientists, who by nature of their work, must apply a level of academic rigor and conservatism to their interpretation of results and who are prevented from making claims about things that cannot be proven.

An example of what I mean can be found in the PARTNER study over the explanation of confidence intervals.

A really excellent explanation of a confidence interval can be read at the body.com here. There it introduces confidence levels in the following way: ‘Study results usually need to consider the possibility that the actual result might not have been seen in the study. For example, whether different results would be seen if the study continued for longer. Or if it had enrolled more people.’

This kind of interpretation is needed because most of us who are using this information by relaying it to the general population, are not familiar with how the research is done, analysed, reviewed or reported. Myself – with a social science background – included.

In fact, an excellent summation of the study can be found on the ibase website, which includes this concise interpretation of the confidence interval:

‘While no study cannot exclude the possibility that the true risk might lie within the upper limit of the 95%CI – even if the true value is actually zero due to some as yet unproven mechanism – the 95%CI can never be zero, just become increasingly close.’

But what do you hear when you read that? You might think ‘okay well, it’s not impossible?’

This reminds me of a clip from Dumb & Dumber, when Jim Carrey’s character is delighted to hear about his ‘one in a million’ chance of hooking up with his crush.

Learning about the intricacies of a scientific study can be useful in some circumstances, but unhelpful in others. Most people want to hear about what is safe and unsafe, what poses a risk and what does not. It’s our job to interpret the complexities of the research but turn it into a more simplified message that works in the real world.

In the aforementioned blog post by Mark S. King, Mark references an episode of the Oprah show which I well remember. I’m going to suggest you watch a particular clip of that episode. Here, an audience member demands a public health official to guarantee that AIDS cannot be transmitted through a swimming pool while the official struggles to explain that medicine and public health doesn’t work like that. (Trigger warning as the clip degenerates into a homophobic, AIDS-phobic rant to the cheers of the audience.)

"I don’t think that the hesitancy is to intentionally stigmatise people living with HIV (though in consequence it does."

HIV education will always be a nuanced message and will never be this simple. But I think that we educators who read the scientific results can easily misinterpret the information to believe that there is a legitimate risk that is worth warning the public about, even if the risk is small.

We are scared.

HIV organisations play a really important role in HIV prevention. It’s up to us to get the right message out there. This concept is simple. If we give out the wrong message about this, and someone gets infected with HIV, it’s our fault. Telling people that something is safe is a big responsibility and it’s not one to take lightly. So if the higher-ups tell us that something poses a risk, we listen.

I recall my own turning point on the issue of undetectable = uninfectious. It was a number of years ago. The results of the HPT052 study and the Swiss Statement had come out, telling us that it was exceedingly unlikely for someone with HIV to pass their virus to their partner. But then I attended a national HIV conference in Toronto. The national HIV bodies there told all of us to be cautious about the results. We were told that:

• STIs can increase the risk of infection
• Viral blips can increase the risk of infection.
• Viral load is not tested in semen or other body fluids and may contain higher levels of the virus
• HPTN052 studied heterosexual partners; the risk of transmission occurring in anal sex is about 20x higher than vaginal sex

Now, all of these points are valid, although the PARTNER study showed us that none of these factors actually increase the risk. (And by the way, 20% of the heterosexual participants who took part in the PARTNER study were having anal sex, which flies in the face of the assumption that only gay men engage in anal sex). However, at the time, this was the going message. I pointed out these caveats via leaving a comment on a blog post on the topic on PositiveLite.com, where Bob royally schooled me. In fact, it was that comment-conversation and especially reading an interview Bob linked to with Dr Julio Montaner that changed my mind.

In the above instance, I developed my own opinion based on what I read. But as educators, do we go with our own interpretation or do we stick with the party line that has been thoroughly vetted and approved? And further up the chain, organisations need to determine what their messaging is; do they interpret the evidence themselves, considering the implications for health promotion and stigma, or do they err on the side of caution?

We don’t really believe it’s true.

In considering unlikely scenarios, I was prompted to research unusual deaths. Some unusual causes of recent deaths include:

• Being struck by a flying manhole cover while driving
• Being impaled by the horn of a bull statue while playing hide and seek
• Being crushed by a cow that climbed on to, and fell through, the roof
• Being hit by a rolling bale of hay while driving
• Choking on a fish that jumped up into a fisherman’s mouth and got lodged in his throat
• While walking, being struck with water from a fire hydrant that had been hit by a car
• Being mauled to death by coyotes in a park

All of these examples constitute a low risk – they wouldn’t even make the negligible risk criteria in the categorisation of HIV risks, because there is evidence of these things happening at least once, making the risk greater than purely theoretical. Imagine if public health decided to warn people that, while walking is healthful, there is still a ‘low risk’ that you could die from an exploded fire hydrant. Or that, while sleep is necessary, you could die from a cow falling through the roof. Should the risk of choking on a live fish that jumps into your mouth be included when warning people about the risks involved with water safety?

The truth of the matter is, although we are cautious not to say that something cannot happen, we already tell people that you can’t get HIV from a number of activities where, if pushed, could probably technically fall under the ‘negligible’ risk category. Take kissing. Saliva cannot transmit HIV and the mouth is an inhospitable environment which offers good protection against HIV transmission.But, if someone has fresh blood in their mouth and they share an open-mouthed kiss with a person with fresh open wounds in their mouth, it’s not impossible that HIV transmission could take place. Imagine if we went around saying that kissing could possibly, in certain circumstances, transmit HIV!

However, we are confident saying that kissing represents ‘no risk’. This is probably because to do otherwise would generate misinformation and promote stigma – but the message of undetectable = uninfectious would also address misinformation and stigma. I think we are simply comfortable saying that kissing represents no risk because we know that it’s an illegitimate risk. Just as we don’t worry about our children impaling themselves on statues during games of hide and seek, it does not make sense to generate concern over HIV transmission opportunities that are incredibly unlikely.

On that note, condoms are not 100% effective. But we feel very comfortable promoting condom use and the benefits of the condom. It is, and has been, the Trojan Horse (mind the pun) of HIV prevention. But, as ibase says in its 2016 version of HIV testing and risks of sexual transmission, ‘Viral load as a factor is more important than condom use.’ So why are we so comfortable in promoting condom use and not an undetectable viral load as a prevention method?

I don’t think that the hesitancy is to intentionally stigmatise people living with HIV (though in consequence it does.) I think that in HIV, condoms have been the holy grail for so long, and unprotected sex has seemed so dangerous, we can’t really believe otherwise. It’s just hard for us to get our heads around it. One could easily argue that the attitude is linked with homophobic attitudes towards gay men enjoying lots of unprotected anal sex. Yes, those attitudes exist, but I think in this sector, most people working actually want this result, we want people to enjoy unprotected sex and greater intimacy and sexual freedom. But I think for so many years, unprotected sex has been associated with risk, and the science has actually exceeded what we can mentally, or perhaps socially, grasp. I expect that our confidence will come with time.

While at HIV/AIDS Resources & Community Health, I worked in Positive Prevention for a number of years, and there I needed to be able to tell people what kind of sex posed a risk and what did not. I knew lots of positive people who would only have sex with a negative partner if a condom was used (even though they had an undetectable viral load) but also lots of people who refused to have sex at all. The finding was so pronounced we obtained a grant from the Ontario HIV/AIDS Treatment Network to do a study called Show Me the Love. This study revealed that HIV positive people in our community often chose to abstain from sex completely. Partly this decision had to do with a fear of rejection or other reasons. But it also had to do with fear of infecting another person. If we are able to confidently tell people that you can have safe, condomless sex without fear of infecting your partner, imagine the freedom and the resulting intimacy. Just look at the difference it made to these two love birds.

We need to somehow get a grip on what these messages mean for people, and the implications of our messaging. That, I think, will involve some reflection on how we use and interpret scientific findings and our comfort levels with risk.