Guest post by Steve Spencer, from his presentation on a consumer perspective on PrEP to the 2019 Australasian HIV Conference in Perth (edited for publication by Daniel Reeders)
Conversations changed my life as a PrEP user, and that’s why I’m really excited to bring the consumer perspective to the conversation about ending HIV. Before coming, I asked my social media community for insights. What do they want to tell you? What do they want to hear from you? And what do they demand as PrEP users? I asked them what is good and what is bad, what their hopes are and what their fears are. The lived experience of PrEP is deeply personal and more complex than these binaries, so this is just a snapshot.
We all know the frequently asked questions, we know the topics du jour surrounding PrEP. So I will start by drawing attention to the less discussed topics that, as we approach majority coverage of PrEP in ‘at-risk’ groups, are becoming issues the HIV sector must address.
I am now a person living with HIV, and I can’t help but speak from a dual perspective. As a sector — as a community, in fact — we understood that some people would get HIV when condoms were the only prevention tool we could offer guys who wanted, as they say, to fuck raw. But we are so far away from accepting that PrEP users can get HIV too.
The ‘age of PrEP’ as the ‘end of HIV’, as some see it, presents myriad challenges for those who seroconvert — in rare cases where medication has failed, or more commonly, cases where education hasn’t got through or the regimen hasn’t been doable. Whatever the reason, PrEP users who seroconvert are facing old stigma with a whole new intensity — and this is unacceptable.
PrEP has uncovered the hidden demographics of new diagnoses, and they tell us we won’t be ending HIV any time soon. So any discussion about PrEP and its enormous, mind-blowing success, has to be tempered with the reality that many people aren’t benefiting from it yet, many people will get HIV in the future, and people with HIV are still living with stigma and still need support and respect.
So, what’s the good news about PrEP?
Other than the excellent news it works exceptionally well at preventing HIV, PrEP users are excited that PrEP use is growing and becoming more dynamic. It’s more common to find partners who share the lived experience of being a PrEP user. I remember how difficult it was being an early adopter — all the fears that I had to constantly assuage in others.
Also, static and conservative clinical guidelines are finally relaxing. Use of on-demand, or event-based PrEP is growing and is slowly being endorsed by clinicians as an option. Importantly, our diverse communities with diverse behaviours and diverse prevention needs are beginning to find and share the diversity in PrEP use. They have options for using PrEP that adapt to the uniqueness of their lives. This is truly groundbreaking. We talk about the HIV preventative ‘toolbox’, well, we’re discovering that PrEP is the cordless screwdriver with many different heads.
In terms of access, it’s getting easier and easier to access PrEP. Whether it is through the PBS or online, there are many price options and access options. I would particularly like to draw attention to the innovative 3-for-1 schemes available at a few Melbourne pharmacies, where you get 3 months (a standard script) worth of drug for the price of one month, thanks to a charitable organisation. And we demand greater roll-out of these sorts of schemes – with the listing of PrEP on the PBS, access through many pharmacies became less affordable than buying it online, and making PrEP cheaper should be a goal for pharmacies.
What’s bad about PrEP?
We’re not getting women. We’re missing heterosexual men and bisexual men who aren’t community attached. We’re swinging for but missing trans people. We’re not reaching out to Indigenous communities. We’re missing culturally and linguistically diverse people and overseas-born men who have sex with men. We’re swinging for but still we are missing international students. Clinicians and researchers and health workers see it in the statistics, and we all see it in the changing demographics of new diagnoses. PrEP-users acknowledge this gap and they are also the perpetrators of the stigma against non-users. A gap is being created between PrEP users and non-users, and over time division will be felt in our community.
While it can be argued that PrEP is shrinking the serodivide between negative and positive people, there is undoubtedly miseducation, misinformation, and plain old stigma and discrimination against people living with HIV by PrEP users. Persistent stigma against people living with HIV during this period of significant growth in PrEP use is a scourge – when you see ‘PrEP 4 PrEP’ written on a Grindr profile, this isn’t a sexual preference, it’s a failure of education. It harms the entire community, and those scared men are being let down, because they are not getting support to embrace the science and the life-giving U=U message that should be welded to the PrEP message.
At a practical level, the discussion about cost needs to continue. The medication itself can be relatively cheap (depending on your access options), but doctors and pathology are not cheap. If we are to achieve a greater number of users to help bring down HIV diagnoses, we need to make it as easy as possible to access the entire PrEP combination to ensure positive health outcomes.
As a final point about what we can improve about PrEP, we continue to see doctors misunderstanding PrEP and the unique needs of their patients. When a doctor doesn’t support you to use PrEP, you’re disempowered to protect yourself. They tell you: ‘I’m sorry, we do not promote that behaviour, you are on your own.’ And that’s a problem. Would-be PrEP users experience friction and discrimination from clinicians, and this is a particular problem for people outside of community-attached gay and other MSM — the groups I mentioned earlier. We battled that resistance to daily PrEP and won, now we have that same fight all over again with event-based PrEP. We’re even seeing people report feeling judged when they cease PrEP use.
Prevention decisions are personal choices. They should be informed, but not judged. We should not underestimate the ability of individuals to access cutting-edge information and apply it to their own needs in real time — and to share it, thoughtfully, with their mates. These people need to be supported to achieve the best outcomes. I have experienced this personally, when you’ve done the research, you know your options, and your doctor says you’ve done the wrong thing. I can tell you it leaves you feeling confused, it leaves you feeling awful.
What are the fears of PrEP users?
PrEP users are still afraid of HIV. It is really sad to say. They are still afraid of people living with HIV. It only takes a glance at any online PrEP forum to see the level of fear that persists amongst PrEP users, even among some long-term users. Intergenerational trauma and intra-community division will take a long time to dismantle – a blue pill doesn’t make it go away.
As PrEP use becomes more mainstream, people starting PrEP often don’t fully understand or engage with the science. Where is our education going wrong, especially around other STIs, when PrEP users are still oppressed by anxiety and fear (and projecting these fears onto others)? Many users still understand HIV as an abstract concept. Speaking personally, what I learnt about HIV after my diagnosis shook up my preconceived notions about what it’s like to live with HIV. More importantly, it taught me how I can be a better PrEP advocate; it has given me a keen eye for the fault-lines in our approach to PrEP and its place within HIV prevention. When we are operating in competition or in silos, we are not working together and it is prohibitive to our goals.
What are the hopes of PrEP users?
Hope is my favourite topic right now, because there are so many areas of current cutting edge PrEP research that offer reasons for hope. PrEP users want to see injectables, they want to see implants, they want to see a vaccination. These are currently visible on the horizon and they are the future that PrEP users demand soon. We knew, years ago, that taking a pill every single day to keep you safe from HIV would become a thing of the past. Medical innovation will improve on PrEP as we know it, make HIV prevention more simple, more available, and more suited to each individual. Just like the first participants in the early PrEP studies, HIV negative want to do what it takes to make these advances a reality.
PrEP users, like the rest of us, hope for the end of HIV. This can only be achieved with the full endorsement of U=U — the combination of PrEP + U=U is a formidable force to end HIV. We need to listen to HIV positive voices on how this can be achieved. As a young PrEP activist in Melbourne five years ago, I learnt everything I know from people living with HIV. They were formative in how we adapted the PLHIV playbook to the needs of PrEP users and prospective users. This legacy must continue.
We have done an amazing job in Australia and we are world leaders in responding to HIV, from everyone working within the sector, to the grassroots movements and organisations that changed the culture around PrEP and made space for the science to work, to the individual PrEP users that took that first leap of faith. I know faith has very little to do with science, but now the science is in, PrEP users have faith in PrEP, and they have faith in our abilities as a sector, so it’s time to build on our success. We let everyone down when we don’t educate properly on PrEP.