While 41% of HIV-negative people from sexual and gender minorities in the UK are taking PrEP, figures drop to below 15% in most of the Balkans and eastern Europe, according to results from the European MSM Internet Survey (EMIS) 2024.
Too many people stop taking PrEP when they still need it, and this is often due to access difficulties, Professor Kai Jonas of the University of Maastricht told the 2nd European Workshop on Breaking PrEP Barriers, organised by BCN Checkpoint in Barcelona last week.
Almost all European PrEP users are taking tenofovir disoproxil / emtricitabine pills – the two injectable versions of PrEP are not yet available in the public healthcare system of any country in mainland Europe.
PrEP knowledge and uptake across Europe
The EMIS survey was available online in 35 languages through online dating apps and outreach by community organisations. A total of 50,330 people in 50 countries took part: the vast majority were gay and bisexual men, along with 2,658 trans and non-binary participants.
Overall, 77% of respondents had a basic awareness and understanding of PrEP: they knew that it involves an HIV-negative person taking pills before and after sex to prevent them getting HIV. In most of central and eastern Europe, between 60% and 75% of people knew this (but only 51% of Polish respondents did). Knowledge levels were a little higher in most of the Balkans, and in all countries west of Austria, at least 80% knew this.
But only 46% of respondents had an understanding of event-based (or 2-1-1) PrEP, and knowledge concerning PrEP and gender affirming hormones was lower still.
Current oral PrEP use was relatively high in several western European countries, including the UK (41%), France (39%) and Belgium (36%). But it was below 25% in Ireland and Austria, and below 20% in Italy, Portugal and Sweden. Towards the east, figures of around 12% (Poland, Czechia, Kazakhstan), around 6% (Hungary, Romania, Azerbaijan) and around 4% (Greece, Russia) are more typical. Ukraine stands out as an exception, with 20% PrEP uptake.
Based on several indicators, participants under the age of 25 had higher levels of unmet PrEP needs than other participants. Only 18% had discussed PrEP with a healthcare professional (compared to 32% of the whole sample), 38% lacked a basic understanding of PrEP (compared to 22%) and 6.6% were taking it (compared to 20%).
Among trans and non-binary people, some of the highest level of unmet needs were in non-binary people who were assigned female at birth. Only 12% had discussed PrEP with a healthcare professional, 45% lacked a basic understanding of PrEP and 2.8% were taking it.
There were also high levels of unmet need among people who were less ‘out’ about their sexuality or gender identity, refugees and asylum seekers, and people who summed up their relationship status as “it’s complicated”.
The challenge of PrEP discontinuation
An emerging unmet need concerns people who stop PrEP, not always because their need for HIV prevention has changed. The meeting heard national Spanish data showing that 72% of PrEP users who acquired HIV had interrupted PrEP at some point. Also, 61% of people diagnosed with HIV at 56 Dean Street in London last year had previously stopped using PrEP.
Jonas turned to a second pan-European survey to explore this in more detail. PROTECT recruited over 15,000 participants in 20 western and central European countries, through dating apps and social media. As the recruitment adverts focused on injectable PrEP, the survey tended to engage people interested in PrEP.
Just under 1000 cisgender gay and bisexual men who had stopped PrEP were asked why they had done so. Access issues were prominent: 52% cited procurement difficulties and 54% not wanting to pay for PrEP, while 37% mentioned it being expensive and 24% the difficulty of getting HIV and kidney tests done.
It’s likely than many of these men were not getting PrEP through their country’s official healthcare system - an earlier analysis from PROTECT showed that 11% of people who had ever used PrEP had got it through informal means such as online pharmacies, friends and drug dealers, and that this group had a threefold higher likelihood of stopping PrEP than other participants.
Other reasons for stopping PrEP were cited too, including not wanting to take medications every day (60%), concern about getting other STIs (54%), side-effects (50%) and being in a stable monogamous relationship (21%).
Without PrEP, many turned to risk reduction strategies that may be less reliable – 47% mentioned serosorting (basing sexual decisions on a partner’s declared HIV status) and 34% used what Jonas called “PrEP surfing” – relying on their partner being a PrEP user.
Another 9.6% did not use any HIV prevention strategy after stopping PrEP. This group were nine times more likely to have condomless sex than other participants and three times more likely to report financial challenges.
Jonas said while PrEP uptake is important, we need to pay more attention to adherence and discontinuation – and providing the form of PrEP which suits people best.
For more information, read the original press release.
For more news from the world of long-acting therapeutics, sign up to the CELT's LONGEVITY mailing list here for regular updates.