Survey finds good knowledge of PrEP in Europe and a considerable amount of unsupported informal PrEP use

About half of men and transgender people interested in using PrEP and one in five women

Gus Cairns
Published: 01 December 2016

A large survey of knowledge and use of pre-exposure prophylaxis (PrEP) in Europe released its preliminary results on World AIDS Day.

The Flash! PrEP in Europe survey found high, though varying levels of knowledge about PrEP among respondents. For instance 62% of gay men (excluding Germans – see below) had both heard about PrEP and had a correct knowledge of it, but only 27% of female respondents. The majority of people who said they did know about PrEP were accurate in their knowledge; but a substantial minority confused it with post-exposure prophylaxis or PEP.

Five per cent of gay men with knowledge of PrEP had used PrEP informally, i.e. obtaining it online or from friends, but two-thirds had no medical support or monitoring for their PrEP use.

Most people thought it should be offered through public health systems and a majority thought it should be provided free of charge or at least partly covered by health insurance.

The Flash! PrEP in Europe survey took place from 15 June to 13 July this year. It was promoted by national HIV organisations and clinics and by the dating sites Planet Romeo and Hornet.

A total of 15,880 people answered the survey altogether. Of these, 14,689 (92%) were men: 907 women (6%), 247 transgender people (2%) and 37 who did not define their gender also took part.

When results came through, it soon became clear that they might be hard to analyse because there was a problem: a large majority (10,288 or 70%) of male respondents were from one single country – Germany. Furthermore, German men differed from other men significantly. They were less likely to define as single (34% of Germans versus 45% of other men), were better off (52% versus 30% said they were ‘doing well’ and 6% versus 12% “having difficulty making ends meet”), tended to live in smaller rather than larger cities and had considerably lower levels of knowledge about PrEP prior to the survey.

Incidentally, the large EMIS Survey of gay men in Europe in 2008 also had a much higher, though not so disproportionate, number of responses from Germany – in that case this was ascribed to promotion by the gay dating site GayRomeo.

The Flash! PrEP in Europe scientific committee therefore decided to divide its analysis of results from men into those from Germany and those from other countries.

The other well-represented countries included France (754 responses from men, women and transgender people), Netherlands (620 responses), Greece (494), Spain (444 responses), Romania (419), Denmark (407), the UK (398), Portugal (383), Italy (353), and Switzerland (274), with 205 responses from other European countries.

Taking the non-German men first, half were aged below 36. Forty-four per cent said they were either “in a relationship” or “in an open relationship”.

Three-quarters (76%) had had sex only with other men in the last six months and 17% had not had sex at all. Three per cent each had had sex with both men and women, or only with women. (Respondents were also asked if they had had sex with transgender people but less than 1% had in all groups except trans people themselves.)

Seventy-seven per cent said that they had known what PrEP was before answering the survey and of these, 80% had correct knowledge of it (62% of all non-German men).

More than half (54%) said they were interested in using PrEP, saying it would make them feel safer or less anxious. Those who were not interested in PrEP said they didn’t need to change how they protected themselves or didn’t want to take daily medication.

Eighty-five per cent thought PrEP should be provided as part of a comprehensive HIV prevention package. Half thought PrEP should be free of charge to those who needed it and another 38% thought it should be covered at least in part by health insurance.

Among those who knew what PrEP was before they took the survey, 156 men (5%) had taken PrEP informally by buying it online, using PEP tablets as PrEP, or from ‘off label’ prescriptions by doctors and two-thirds of them said they had no or irregular medical supervision for their PrEP use.

The German men were similar in age and in the proportion who said they were in a relationship or an open relationship, though they were less likely to define as ‘single’ and more as ‘having dates’. A slightly lower proportion had only had sex with men in the last six months (67%) and somewhat more with both men and women (7%).

Only 37% said they had known what PrEP was before answering the survey, half the proportion in non-German men. Of those who did know what it was, they had similar levels of correct knowledge.

A lower proportion (44% versus 54%) said they were interested in using PrEP, and among those who did, reducing anxiety and feeling safe were also cited as the main reasons. But of those who were not interested, worry about side-effects was the most commonly-given reason, in contrast to non-German men.

Of those who had known what PrEP was, 4% had taken it informally, with a similar proportion (70%) using it with no or irregular medical supervision.

The women and transgender people who answered were not divided into German and non-German.

They were on average younger (half under 30 in women, half under 28 in trans people). They were more likely to say they were having difficulty making ends meet (16% of women and 25% of transgender).

The cisgender women were more likely than other respondents to say they were in a relationship (61%, only 9% ‘open’) and transgender people somewhat less likely (39%, 19% ‘open’.)

Cisgender women were more likely than gay men, and trans people much more likely, to say they had had no sex in the last six months (23% and 37%). Among women, 64% said they had only had sex with men, but there were significant minorities who only had sex with women (6%) or with men and women (5%).

A higher proportion of trans people had sex only with men (36%) than other partners, but 6% said they had had sex only with women, 7% with men and women, and 14% with other trans people (though only 2% exclusively).

Forty-seven per cent of women and 55% of trans people had heard of PrEP prior to the survey and three-quarters of these, in both populations, had correct knowledge of PrEP.

Trans people were as interested in PrEP as the male respondents: 44% said they were interested in it, giving similar reasons to the men. But only 18% of cisgender women said they were interested in using PrEP. Those who were not said they didn’t feel they had to change the way they protected themselves or did not think they were at risk of HIV.

Eighty-four per cent in both cases thought PrEP should form part of an HIV prevention package and a somewhat higher proportion than men (60% in women, 64% in trans people) thought it should be free of charge.

Only nine individuals – four cisgender women and five trans people – had used informal PrEP and of those only two had regular medical supervision.

Announcing the results, Aurélien Beaucamp, president of the French HIV organisation AIDES, said: “These results support our call for access to PrEP for all vulnerable populations, in all European countries. Now, more than ever, we need equal access to this new tool to halt the dynamic of the epidemic in Europe.”

Hakima Himmich, president of Coalition PLUS, added that the informal use of PrEP was problematic because the medical follow-up necessary to ensure its efficacy was not taking place.

“If we want to have a real impact on the epidemic, we need to quickly harmonise European policies against HIV by integrating this new tool,” she said.

Reference

Summaries of the initial results from Flash! PrEP in Europe, in ten European languages, can be accessed at http://www.aides.org/FlashPrEPinEurope. The English-language summary is at http://www.aides.org/sites/default/files/newsletter_images/ResultPrepGB_vf.pdf.

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