The large EMIS survey of gay men living in Europe has found that over 70% of respondents with HIV are taking antiretroviral therapy (ART). Of those who have never started ART or have stopped, by far the most common reason was a doctor’s recommendation that they did not need to take it.
A higher proportion of men in central Europe were not taking ART, and in the former Soviet Union more had yet to start ART than were currently on it. This was also, in the main, because it was not recommended or they felt they did not need to start yet. This may be partly because HIV has appeared as an epidemic more recently in gay men in the east. However, there were minorities for whom ART was unaffordable or who feared the consequences of taking it.
EMIS was a large enough study that it was able to unearth interesting minority reasons for not taking ART. For instance, 19 men or 0.5% of the sample were ‘HIV denialists’, saying they doubted the scientific orthodoxy on HIV; while ten men expressed feeling hopeless or suicidal as their reason not to take ART.
Results in detail
EMIS collected data from over 180,000 gay men in 38 European countries in 2010, of whom 174,209 gave their HIV status. Of these, 13,353 (7.7%) had HIV.
Of these, 9484 (71%) indicated they were on ART; 3391 (25%) had never started it; 287 (2%) had stopped (this included some who had taken part in a drugs trial and five individuals who had taken post-exposure prophylaxis in the past) and in 1.5% their ART status was unclear.
The proportion on ART varied from region to region. The numbers who answered the survey also varied from country to country, making it difficult to compare directly the proportion of men on ART in each region, but across the whole survey slightly more than a third (36%) of men had never taken ART compared to the number that were currently taking it. However, in the former communist countries of central Europe (Poland, the Balkans, Hungary etc.) the proportion who had never taken ART, compared with those currently taking it, was 65%; while in the former Soviet Union countries 20% more men had never taken ART than were currently taking it.
One contributory factor could be youth: while only 4.3% of the HIV-positive EMIS respondents was under 25, 10.5% of those who had not started ART was under 25, and the respondents from eastern Europe were somewhat younger, with an average age (of all EMIS respondents) of 28 in eastern Europe and 33 in western Europe. While it may be more difficult to access ART for some in eastern Europe (see below), HIV among gay men is a much more recent phenomenon east of the old Iron Curtain than west of it, so a higher proportion of men with HIV may not need treatment yet.
Overwhelmingly, the most common reason for not starting ART was that it was not yet recommended (88%); in addition, 9% said that they themselves felt it was not necessary (people could give more than one reason). About 7% said they were worried about side-effects and 5% said they did not want to be reminded of HIV every day.
Of the small number (272 individuals) who had stopped taking ART, the most common reason was still their doctor’s recommendation (64%). However, 29% said ‘to avoid side-effects’, 15% said they did not want to be reminded of HIV and 12% said they personally felt it was not necessary.
Eighty individuals (2.2%) out of those who had either never started ART or stopped it said they could not afford to take treatment, 98 (2.5%) said they were afraid people would notice they were on ART and therefore had HIV, and 78 (2.2%) of those who had not yet started said they had only just been diagnosed or were waiting for lab results to come back.
Other answers (some prompted by the survey questions, others offered spontaneously) were rare. Only 16 individuals said ART was not available at all where they lived.
As mentioned above, 19 individuals said they distrusted the scientific orthodoxy on AIDS; one Russian respondent said “There are other ways to control viral load but one only speaks about ART.” And ten individuals – six of them having stopped ART, four yet to start – expressed hopelessness: one German respondent said “I do not want to live with the shame” while a Hungarian said simply: “I have lived long enough.”
Reasons other than medical advice for not taking ART were all more common in the former Soviet countries. Although absolute numbers of respondents are small, 25% in these countries, as opposed to 9% generally, personally felt they did not need ART: 14% versus 8% generally were concerned about side-effects; 14% versus 6% said they did not want to be reminded of HIV every day; 7% versus 3% said they were afraid others would notice; and 5% versus 2% said it was not affordable. Seven of the 15 individuals who said ART was not available at all were in this region – though that is out of a total of over 450 respondents with HIV from this region.
Dissatisfaction with medical services
Dissatisfaction with medical services was also very roughly twice as common in both the former Soviet and other former Communist countries than in the rest of Europe, with one notable exception. A quarter of respondents in the former Soviet countries were dissatisfied with arrangements for confidentiality when testing for HIV versus 13% in all regions and 20% were dissatisfied with the respect shown to them by medical staff versus 14% generally. Nineteen per cent in the east versus 9% generally said they had had experiences of being denied medical help.
The big exception was satisfaction with the counselling received when testing for HIV. A third of respondents in general were dissatisfied with counselling and this varied, in all regions but one, between 25% (central-west Europe) and 39% (former Soviet countries). But the highest proportion dissatisfied with counselling was 44% in the EMIS western region which includes the UK, France, the Netherlands, Belgium and Ireland. With 1679 individuals reporting this, it is unlikely to be a chance finding and needs more investigation; pre- and post-test counselling, for instance, was not differentiated.
This meant that, in the main, people in the rest of Europe were actually less worried about testing or taking ART than in the region containing France and the UK, with the exception of the former USSR: the most optimistic about taking ART were in the Southern European countries (Portugal, Spain, Italy, Greece) although, with over 40% of those with HIV not taking ART, it was not the area with the highest numbers on ART.
In general, EMIS does not provide any evidence that gay men throughout Europe are finding it difficult to access ART or do not trust in it. However, only 7% of EMIS’s HIV-positive respondents came from the former Communist countries of Europe and they were more likely to be young and well-educated; the lower levels of ART use there may conceal problems with availability for those less likely or able to answer the EMIS survey.
Marcus U et al. Antiretroviral Therapy and Reasons for Not Taking It among Men Having Sex with Men (MSM)-Results from the European MSM Internet Survey (EMIS). PLOS One 10(3. doi: 10.1371/journal.pone.0121047. 2015. Full text here.