People living with HIV are facing stigma, discrimination and comparatively low life satisfaction, according to a survey of more than 4,500 patients in the U.K. The survey shows medicines have transformed the management of the condition, but other aspects of life with HIV are proving more resistant to change.
The U.K. Health Security Agency and University College London ran the survey at HIV clinics last year to see how the situation has changed since patients were last polled in 2017. There are signs of progress. The pill burden has fallen sharply, with the percentage of people on single-tablet regimens rising from 35.7% to 54.0%, and the proportion of patients on antiretroviral therapy is nearing 100%.
More than 90% of respondents are aware of the undetectable=untransmittable, or U=U, concept. One person said the knowledge their infection is undetectable makes them “feel comfortable and confident,” but there is some skepticism, with only 62.7% of people saying they strongly believe U=U to be true.
The sections on quality of life, stigma and discrimination reveal areas where progress is needed. Reports of stigma have improved slightly since 2017 but remain “very high across many domains,” the survey found. Almost half of respondents felt ashamed about their HIV status. One-third of people said their HIV status gave them low self-esteem. One in 10 people have only shared their status with healthcare staff.
Some respondents who have shared their HIV status with other people in their lives have suffered as a result. One in 25 people said they have been verbally harassed because of their HIV status in the last year. A similar proportion said family members had made discriminatory remarks. Higher levels of stigma were seen in younger people, women and people who identified as trans, non-binary or in another way.
One in four respondents had experienced physical violence, and one in seven reported being sexually assaulted. Some respondents linked the physical violence and sexual assault to their HIV status. Reported levels of physical and sexual violence were higher in younger people, gay and bisexual men, and people who identified as trans, non-binary or in another way.
“It is very concerning ... to see stigma experienced so prominently in the lives of people living with HIV with reports of people being verbally harassed, physically attacked, excluded from family activities and left isolated and lonely,” Clare Humphreys, consultant in health protection at the U.K. Health Security Agency, said in a statement.
The findings, which include higher rates of anxiety or depression and lower life satisfaction in people living with HIV, point to areas that the U.K. needs to improve if it is to meet its 2030 targets. By then, the government is aiming to end new transmissions of HIV. Responding to the report, Andrea Leadsom, the U.K. Minister for Public Health, said tackling stigma is crucial to achieving the goal because “the more people talk about their HIV status, the more likely they are to get tested and get access to the right care.”