NAM European HIV prevention survey: final results

Gus Cairns
Published: 28 July 2014

A pan-European survey of opinions about HIV prevention methods, conducted by NAM last year and answered by prevention experts and advocates from 20 European countries, has found that expanding HIV testing was universally regarded as the prevention priority that was accorded the most importance in their area, with condom provision as the second most important. When asked what priority should be given to various different prevention methods, while testing and condoms were still recommended as the most important priorities, the priority for treatment as prevention and pre-exposure prophylaxis received big increases in their priority score, while the prevention of mother-to-child-transmission, needle and syringe exchange and, especially, opiate substitution therapy, were marked down in terms of popularity.

A report on the English-language answers for the survey has already appeared on aidsmap.com. This supplements that report by adding in the 30% of answers in French, Portuguese, Russian and Spanish, which increases the number of respondents’ countries of residence from 16 to 21.

The NAM prevention opinion and beliefs survey appeared on aidsmap.com and ran between 15 July and 4 October last year. It was targeted at people working in HIV prevention organisations in Europe, though anyone was free to participate, and it was answered by 243 people, with 71% (173) answering in English.

Testing and treatment

Expanding testing was overwhelmingly chosen as the most important priority for HIV prevention; respondents’ estimation for how many people in their area had ever tested was quite low, at 37.5%. There was some regional variation, with Russian- and Portuguese-language respondents estimating that only 25% of people in their area had been tested for HIV. However, there was huge heterogeneity in the answers to this question, with respondents estimating that anywhere between zero and 100% of their local population would have tested for HIV, probably reflecting that the survey did not specify whether we were talking about the general population or particular groups.

Respondents were more enthusiastic about expanding testing than any other prevention method:

“Knowing your HIV status means you can begin treatment and minimise the impact of the virus on the health and general welfare,” said one Portuguese respondent, while a number of others supported standardising testing and making it available in varied medical settings:

“Having more testing places in ordinary places would put the idea of getting tested more out in the public eye,” said one English respondent, while a French respondent thought testing should be “Structured round a person’s needs; people often want to be tested in their local health centre but fear facing questions, prejudice, contradictory or outdated information, and lack of anonymity and confidentiality.”

Several respondents stressed that austerity measures in Europe were endangering testing programmes. A Polish respondent said “HIV testing is needed and in Krakow we have lots of students. They would like to take a test but we don't have enough services. It's because of lack of funding.”

The provision of treatment is obviously only possible if people are tested, but a number of respondents emphasised that there were groups in their countries that did not have easy access to treatment: “Not everyone gets treatment here, for instance undocumented immigrants do not have access to health services and those who have not paid enough contributions,” says a Spanish respondent. Another consistent theme was the importance of people being able to decide for themselves whether or not they took treatment, and especially treatment for prevention reasons. “I think we should see firstly the wellbeing of an HIV-positive person,” said an English respondent. “If s/he wants treatment as prevention - everything's ok. But his/her health is the most important, not only that of his/her partners.”

Others were concerned about people seeing being virally undetectable as a “get out of jail free card”, meaning that it would make them feel they did not have to have safer sex. Another said “There is a duty of care for individuals who are HIV+ not to necessarily make them think immediate treatment for prevention purposes is the only option. This approach needs to be thought through more thoroughly, as some may be perfectly able to use condoms, disclosure etc. and medicalising prevention would not necessarily be fair for them.”   

One unintentional theme that came out from the survey was how complex and confusing people find the different ways of using antiretroviral drugs for prevention. Although we tried to distinguish between them carefully in the questions, respondents assumed we were talking about using treatment purely for prevention reasons when the question was about treatment availability generally, and some even thought we were asking about pre- or post-exposure prophylaxis (PrEP and PEP) - which they also got mixed up with each other. This did not appear to be due to ignorance about the specific techniques, which many respondents clearly understood; but respondents got the admittedly very similar terms confused and had very varied ideas about the efficacy of different techniques, including in comparison with condoms. In the last few years, a lot of scientific data have been generated by different prevention studies and people seem to be confused about the purpose of using combinations of approaches, their absolute efficacy and how effective different combinations of them might be.  

We asked people, as detailed in the previous report, for their estimates of the efficacy of different prevention methods. There was near-unanimity that condoms were the most effective prevention method, followed by treatment as prevention; people were somewhat more sceptical or just more uncertain about how efficacious PrEP and PEP were. Adding in the non-English replies resulted in higher comparable efficacy estimates for condoms and lower ones for PrEP compared with the English-only answers. (The survey was completed before some data came out from studies at the beginning of 2014 and in particular the PARTNER study, which reported very high estimated efficacy for treatment as prevention.)

Condoms were still, for most people, the most important and simplest method of preventing HIV, and many respondents mentioned their ability to prevent other sexually transmitted infections too. A Portuguese- speaking respondent said “Until more and better information appears, condoms remain the most recommended method and accepted practice even among those who refuse to take the test”. A Spanish respondent said: “Although there is evidence that the condom has reached the top of its potential, we must keep using them to prevent the ongoing propagation of HIV.”

Talking of PrEP, many people were still very sceptical and even disapproving of it. A few embraced it with enthusiasm: “In the case of serodiscordant couples this measure can greatly improve the sex life and hence the welfare of the couple,” one Portuguese respondent said. Others thought we simply didn’t have enough data to make a firm judgement about the usefulness of PrEP yet. But others were strongly against it: “The Third World still has millions of HIV+ people without access to treatment and we are thinking to provide antiretroviral drugs to people who really do not need them,” one Spanish respondent said. In general though, the most typical response was that PrEP’s feasibility and cost-effectiveness remained unproven and that more research was needed, especially on issues like drug resistance, before going further.

Priorities

In the survey’s last two questions, we provided twelve different HIV prevention methods ranging from treatment as prevention to behaviour change programmes and needle and syringe exchange. We asked respondents firstly to rank them from one to twelve in order of the current priority given to them, and secondly to rank them on order of the priority they thought they ought to be given.

HIV testing was, and remained, the HIV prevention method accorded by far the highest priority, with condoms coming second. PrEP came in last in terms of the resources currently allocated to it, which is not incorrect as it is currently only available for participants in two small clinical trials, PROUD in England and IPERGAY in France.

However, treatment as prevention and PrEP received the biggest increase in prioritisation when respondents were asked what priorities they should be given. Treatment as prevention went up from the ninth to the fifth most important prevention priority, while in the case of PrEP, although it only moved from being the last priority to the second-last, its ‘approval score’ received the biggest increase, almost doubling when it was asked what priority it ought to have.

Because the questions were framed in such a way as to symbolise no new resources, if a prevention method received a boost in the attention and resources devoted to it, another prevention method had to receive less attention and fewer resources. The biggest casualties were the prevention of mother-to-child transmission and needle and syringe exchange and opiate substitution therapy for drug users. Some respondents hated doing this exercise; one French respondent said: “Such a classification makes me uncomfortable; to do one without the other makes almost no sense. Needle and syringe exchanges come in only at position 9, and I’m behind them 100%.”

Compared with the priorities given by English-speaking respondents, the Portuguese respondents were more enthusiastic about treatment as prevention and PEP, and also to some extent PrEP, than other respondents; the Spanish respondents, in contrast, were more sceptical about biomedical prevention methods and much keener on psychological support. The Russian respondents marked down condoms and marked up needle and syringe exchange and the prevention of mother-to-child transmission, which may reflect the demographic make-up of the epidemic there.  The French respondents were also keen on PrEP, but marked down the prevention of mother-to-child transmission.

The survey was generally welcomed, but some participants did find it confusing, with too many questions about similar, and easily confused, antiretroviral-based techniques. Others thought that divorcing techniques from the populations in which they were used did not make much sense: one French respondent said that the survey was too “oriented towards TasP and PrEP without taking into account all populations including ones that might not benefit from them like migrants.” However, others praised it. One English respondent commented: “Thanks - I could express my opinions and also think about them too.”