People with HIV still expect a lower quality of life than their negative peers, European survey finds

A study commissioned by the drug company Gilead Sciences and conducted in five European countries has found that, compared with their HIV-negative peers, people with HIV still expect to die sooner and think they are less likely to achieve a long-term relationship.

The results were announced yesterday during the 16th European AIDS Conference (EACS 2017) in Milan, Italy.

The survey found that 54% of HIV-positive people considered HIV to be a barrier to sex with others, and of them 87% (47% of the whole group) said that they feared transmitting the virus to others.

This could be seen as a rational or well-informed fear, as this was a relatively young group of people with HIV and just under two-thirds of them were actually on antiretroviral therapy (ART), with under half with a reported undetectable viral load.

However, whether people were virally suppressed or not in fact made little difference, with 38% of those with an undetectable viral load fearing transmitting the virus to others, and 43% who were detectable.

Similarly nearly half said their HIV would be a barrier to having a family naturally if they wanted children, with 73% of those (35% of all HIV-positive people) saying that they would be afraid to transmit their HIV either to their partner or, in the case of women, to their unborn child.

More on the survey

The HIV is: Expectations from Life survey was conducted online between November and December 2016 by the marketing research company Censuswide on behalf of Gilead, using a methodology similar to market surveys. Firstly a target number of HIV-positive people were recruited in the five European countries, namely France, Germany, Italy, Spain and the United Kingdom. Roughly 20 HIV-positive women were recruited from each country, to a total of 102 women, and an average of 84 men each, to a total of 420.

Of these 522 people, 11% had never started ART, and a surprisingly high 11% had taken ART but currently said they were not taking it. Of the 338 people who were on ART (65%), 229 (67% or 44% of the whole group) said they had an undetectable viral load.

Respondents were recruited from a ‘consumer panel’ and went through a stringent verifying process before taking part to guarantee they were who they claimed to be.

The 522 people with HIV were then matched against 2723 HIV-negative people in the general population, matched for age, gender and sexual orientation.

All respondents were asked: do you expect to live a longer of shorter life than your friends, peers, older siblings and colleagues? People with HIV were three times more likely to expect they would have shorter lives; 35% expected they would die sooner than their friends, compared with 10% of the HIV-negative group.

Viral undetectability changed this little, with 31% of those on fully suppressive ART still considering they had a shorter life expectancy. 

Perhaps because they saw achieving it as more difficult, when asked about priorities in life such as love, financial stability and career, HIV-positive people were more likely to prioritise love (37 vs 27%) and a healthy sex life (28 vs 17%) than HIV-negative people.

While over half considered HIV to be a barrier to sex with others, fewer (38%) considered HIV to be a barrier to dating and meeting potential sexual partners. By far the most commonly cited barrier to dating was the fear of having to disclose their HIV status, with 59% of those saying HIV was a barrier to dating saying this was a major problem (22% of the whole group).

As well as having a lower estimate of life expectancy, people with HIV were less likely to rate their current health as excellent, with 44% rating their health as good or excellent, compared with 69% of the matched HIV-negative respondents.

Country differences: Spanish and Italians feel less well, but British fear stigma the most

There were some interesting differences in attitudes between countries. Respondents in Spain and Italy were least likely to describe their health as excellent or good (only 34% in Spain, compared with 53% in Germany).

They were also more likely to be fatalistic about their health: 71% of people in Spain vs 38% in Germany said that their HIV status had actually made them less likely to engage in activities to support health and wellbeing such as healthy eating and exercise, because they did not believe they would help now they had HIV.

Notably, however, it was British respondents that were most likely to fear disclosing their status, and to say that the prevailing stigma against HIV was a challenge to getting a long-term relationship.

Sixty-eight per cent of UK respondents, vs 50% of Spanish ones, feared disclosing their status, and 44% of UK respondents vs only 12% of Italians said they feared that the continued stigma against HIV would be a barrier to their achieving a relationship.

In their press release, Gilead comment that “The survey findings indicate a disconnect between the advances in HIV treatment and the aspirations of people living with HIV; they demonstrate an uncertainty around their long-term health and risk of transmission.”