New survey highlights disconnect between the aspirations of people living with HIV in the UK and HIV treatment advances

People living with HIV in the UK continue to have lower expectations from life than the general population, despite HIV treatment advances.

New survey highlights disconnect between the aspirations of People Living with HIV in the UK and HIV treatment advances.

Results from the survey show that the expectations from life of people living with HIV (PLWHIV) are still lower than the general population despite significant advances in HIV treatment and management that have significantly improved life expectancy.

The findings show that despite the medical advances of recent years, HIV can still have a significant negative impact on how those with the virus see and plan for their future.

The HIV is: Expectations from Life survey found that PLWHIV in the UK are nearly four times more likely to expect to live shorter lives than their friends, peers and older siblings who do not have the virus.

PLWHIV were consistently twice as likely to expect a lower quality of life compared to their younger siblings, friends, peers, older siblings and colleagues, and over twice as likely to describe their health as poor (15%) than the rest of the general population (6%).

The impact of HIV on relationships was also highlighted in the research.

Over the course of their lifetime, PLWHIV in the UK were less likely to expect to be married/in a civil partnership (42%) than those without HIV (51%), and nearly one in three (31%) of PLWHIV expect to be single versus none of those without HIV.

Almost 2 in 3 PLWHIV (63%) said this was in part due to their HIV making them feel uncertain about their long-term health, impacting their ability to commit. The majority (68%) of PLWHIV also said a fear of disclosing their HIV status has impacted their decision to meet potential partners or to go on dates.

HIV was also found to impact decisions to start a family naturally among 60% of heterosexual women, 51% of heterosexual men, and 28% of men who have sex with men (MSM).

Nearly a third (30%) of those who say their HIV status has impacted their decision to start a family naturally cited uncertainty about their long-term health as a reason for this, however, the most common reason given was fear of giving the child the virus (75%).

Tom Hayes of Beyond Positive, said: “This survey suggests that many people with HIV are still unaware that having an undetectable level of the virus in their blood (viral load) means being virtually untransmittable – if HIV is properly treated and managed there should be almost no fear of passing on the virus to a partner or child and PLWHIV should not limit their dating or family planning aspirations.”

“Societal stigma remains a major issue to be addressed, but through sharing the latest scientific understanding within the community, we can work to reduce and remove other barriers, so many of which are due to a lack of understanding or belief in the medical reality of living with HIV today.”

The continued stigma surrounding HIV was also more significant in the UK when compared to other European countries.

Over 2 in 5 PLWHIV in the UK (44%) said that the continued stigma surrounding HIV could be a barrier to a long-term relationship or being married/in a civil partnership compared to 25% in Germany, 28% in France, 17% in Spain, 12% in Italy.

Chris Woolls, Director, Cara Trust, said: “With advances in treatment, the possibility to lead a long and healthy life with HIV is more real than ever before, yet the expectations don’t always meet this reality.”

“Each and every person living with HIV should be receiving the best care available to them, based on their needs and preferences, and not let misconceptions about HIV stop them from leading the life they want.”

Since 1995, the number of PLWHIV aged 50 years or older has more than doubled globally, and is expected to continue to increase over the coming years.

To preserve long-term health, early initiation of HIV treatment is critical, alongside individualising antiretroviral therapy (ART) regimens for patients and taking a multi-disciplinary approach involving healthcare professionals from different disciplines to reduce the risk of developing co-morbidities