I’ve spent the last 1.5 years delivering training on HIV and related topics in Scotland. The audience has been diverse – it’s included nurses, GP’s, infant feeding advisors, midwives, therapists, social workers, addictions and criminal justice workers, dieticians and occupational therapists, psychologists, early childcare workers, people who work with vulnerable adults, students and people in a wide variety of other roles! During this period I’ve delivered training for nearly 550 people. Here are some things I’ve learned along the way.
1 - People are still pretty unaware of how HIV is transmitted – and still think that saliva can transmit HIV.
When delivering training on HIV, I always present a formula for how HIV can be transmitted, and the first step to that is knowing which bodily fluids that can transmit HIV. I always begin by asking people to shout out the bodily fluids that can transmit HIV and together we make a list. Their answers almost always go in this order:
- Semen (sometimes people will incorrectly say sperm)
In all but one episode of training (I have delivered 42 trainings in the last 1.5 years), someone has said saliva. Keep in mind that the training is often being delivered to individuals who work in health care – a group of people who you would expect to be a little bit more knowledgeable on the fundamentals of HIV transmission. (In fact the one and only group who did not say saliva was a group of lay people – volunteers for a local charity – with no or very limited prior knowledge of HIV.)
No wonder HIV stigma still abounds when people think it can be transmitted through saliva! No wonder we still get anxious phone calls from people who think they’ve inadvertently picked up HIV through casual contact. No wonder people are illegally discriminated against at work, when people think you can acquire HIV from sharing a tea cup.
Furthermore, it’s quite common for participants to draw a blank after these three are named. They frequently forget about vaginal fluid (something I’ve written about previously), which is startling – it shows either a lack of awareness of women’s bodily functions, or the assumption that women cannot transmit HIV through sex. As well, anal mucus always gets missed, unless there are individuals in attendance who work directly in the field of HIV or sexual health. This is again concerning.
2 - No one really knows about PrEP or PEP. Again, with the exclusion of those who work in this particular field, there is a complete lack of awareness of these two prophylactics. I am always surprised when I ask participants if they’ve heard of either of these and no one has. (Note that PrEP is now available through the NHS in Scotland.) Given the amount of attention that PrEP has had in the media in the UK over the last year, with gems like this I would have expected people to be more aware of it. However, given that PrEP is relatively new (and its coverage in Scotland being a very recent development) a general lack of knowledge is understandable. What is perhaps more concerning is that there is a real lack of awareness around PEP. Remember that my audience includes healthcare workers, addictions workers and criminal justice workers – people who you would expect to have been ‘prepped’ (if you’ll forgive the pun) on what to do in the case of a needle stick injury. I’ve also trained people who support women who have been victims of violence and rape, but who also had no knowledge of PEP. This could have been crucial information for preventing transmission among victims of rape.
3 - When it comes to PrEP, there is still a certain amount of concern that it will lead to an increase of sexually transmitted infections and unprotected sex. I frequently encounter these types of concerns. However, these are concerns that I pretty easily put to rest, by sharing the evidence from the PROUD study and the London clinics which found that HIV transmissions dramatically dropped, while STI rates remain the same. (Though I always remind participants that since anyone taking PrEP through the NHS will need to undergo regular sexual health check-ups, we might initially see a rise in reported STIs – but should soon lead to a levelling off or decrease of STIs as they are treated promptly.)
4 - No one really knows about U=U either, but they soon quickly get on board. In our world, u=u seems like major news. But outside this bubble, people tend to be completely unaware that treatment has an impact on prevention, let alone prevents onward transmission. The good news is, participants tend to find this information exciting. In fact, out of everything that the participants learn in my training courses, this seems to be the most exciting bit of news. It’s also a message that comes across loud and clear, as I repeat it regularly. If nothing else, people will come out of my HIV sessions having learned about u=u. You might think that I would encounter a fair bit of resistance to this, especially among healthcare workers, but I don’t – people typically get on board pretty quickly. (Occasionally I do see some resistance but frankly we have so much research to back up this conclusion that it seems to satisfy even the sceptics.) For me, the key to help my participants understand this message is a review of some of the key pieces of the research – the summary findings of PARTNER, of course, but also of HPTN 052 (which also had zero transmissions from people who were virally suppressed), the impact of treatment in prevention of vertical transmission, and the fact that this sits within the context of 20 years of research.
5 - It’s important to talk about why u=u matters to people’s health and wellbeing, and the impact it can make on fighting stigma. Even among clinicians, we need to talk about this aspect of u=u. This is why I have found some of the videos by Prevention Access Campaign particularly helpful. Personalising the issue and illustrating the impact that u=u has on mental health and relationships helps to remind participants that people with HIV are people and that u=u has a tremendous – and positive - impact on their lives. By reminding people that stigma is the primary contributor to onward transmission, late diagnosis, avoidance of testing, and non-disclosure, u=u becomes a prevention strategy in more ways than one. I think that when it comes to discussing u=u to healthcare practitioners, we need to showcase the research but also the wider impact of u=u to highlight the validity and importance of this message. This isn’t just about scientific research, it’s about health promotion. This two-pronged strategy (looking at the scientific research but also impact of the message) has worked well for me in training.
6 - Where there is a concern about u=u, it’s usually a concern about viral load increasing in between viral load checks. I get asked these types of questions all the time. How long does it take for a viral load to rise? What if someone has an infection (whether an STI or otherwise)? What if someone has another illness? What if someone misses just one dose, or takes their medication a bit late? I usually answer these questions by pointing to the extensive research that was conducted with a diverse group of people, in many different countries. We know that STIs were present among 18% of MSM participants and 6% of heterosexual participants in the PARTNER study and this did not have an impact on transmission. Nor have Viral blips shown to cause transmission, as evidenced by PARTNER. We also know that while an undetectable viral load is usually around <20 here in the UK, thanks to ultra-sensitive equipment, PARTNER used the threshold of <200 (more widely understood to be ‘undetectable’). Another study, from 2000, found that of the 90 instances of HIV transmission that took place in a community-based trial in Rakai, Uganda, zero transmissions took place where the partner had a viral load under 1500. Other research has shown that no vertical HIV transmissions take place if the maternal viral load is below 1000. All of this at least generally points to the conclusion that if you’re treatment compliant, you won’t pass on the virus – and there is no expectation of perfect health in order for this to be true. However, I think that more detailed answers to these specific questions would be helpful in addressing some of these concerns. We need to remember that some people (and I get asked these questions by clinicians as well as lay-people and people living with HIV) will want to know these kinds of details, and I think they’re valid questions to ask.
7 - There are still lots of myths about who is most at risk for HIV. The reason I can gauge this is through the little multiple choice quizzes I run. When I ask, ‘what proportion of new HIV diagnoses in the UK are among MSM’, most people will answer 80% (it’s closer to 50%). And when I ask ‘what proportion of new HIV diagnoses are among people 45 and over’, the participants are shocvked to discover that it’s 37%. There are still misconceptions that HIV is something that principally affects gay men, drug users, and young people.
8 - There is a dearth of knowledge on breastfeeding and HIV transmission. This is a bit of a thorn in my side. I feel that we in the HIV community have not been widely forthcoming with this information… but nor is it common knowledge in our own community. I won’t say too much more about this as my thoughts can be found here but I do think that this absence of information is something we need to improve. Women are a relative minority in this community, but women occupy 1/3 of people living with HIV in Scotland and represent a quarter of new infections. Breastfeeding is an exception to the u=u rule; it is a unique case, and it’s bound to raise questions and cause confusion! But it’s simply not being talked about. We know that couples can safely conceive naturally and have HIV negative babies without intervention, provided that the HIV+ is undetectable. All the more reason to share the information about breastfeeding now, and do it in a supportive way.
In some ways, it’s really fun being a trainer at point in the epidemic – we’ve seen a lot of change in HIV over the years, and it’s really exciting to share this, especially since so much of the news is so good! But we obviously have more work to do. Since HIV is not a public emergency in the UK, it’s often put to the side-lines. It’s considered a niche area, but as a result, people don’t have the basic information that they need, and many people still are basing decisions on information they learned from the Don’t Die of Ignorance campaign in 1986. Clearly, our job is not yet done.