Treatment satisfaction is high among HIV patients but stigma remains – survey

About one in 25 of those who took part in the largest UK survey of people living with HIV reported having been verbally harassed due to having the virus.

The findings make for “stark reading” as they show a remaining stigma around attitudes towards HIV, charities said.

The Positive Voices survey, which was completed by 4,618 people who were living with diagnosed HIV in the year to March 2023, found that 4.3% said they had been verbally harassed because of their HIV status in the past year and the same percentage said family members had made discriminatory remarks.

The UK Health Security Agency (UKHSA), which carried out the survey, said while there had been a slight improvement in measures of stigma since the first survey in 2017, it still remains “concerning” to survey respondents.

Almost one in three people (32.1%) reported low self-esteem due to their HIV status, while 13.7% worried about being treated differently to other patients by healthcare staff, the survey found.

One in 10 (10.4%) said they had not told anyone about their HIV diagnosis aside from healthcare staff, and almost half (45.1%) reported feeling ashamed.

When it came to treatment, an average satisfaction rating of 9.4 out of 10 in 2022 compared to 9.3 out of 10 in 2017 was recorded for how people view their HIV care service.

The research found that most people (91.7%) were satisfied with their current healthcare plan, with more (54.0%) now on a single tablet treatment compared to 35.7% in 2017.

Clare Humphreys, consultant in health protection at UKHSA, said she was pleased to see the “high satisfaction” with HIV treatment and care, but concerned about the remaining 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”.

She added: “It is important that we continue to address the issues raised in this report in order to support the needs of people living with HIV and also help achieve the Government’s ambition to eliminate HIV transmission by 2030.”

Alex Sparrowhawk, from HIV and sexual health charity the Terrence Higgins Trust, said the survey showed “some progress in improving the lives of people living with HIV – but it’s clear that more work and investment is needed”.

He added: “People living with HIV are living longer thanks to incredible progress around treatment. Government and providers must be aware of this and respond to the needs of people ageing with HIV in the years ahead.”

Deborah Gold, chief executive of the National Aids Trust, said: “These survey findings are an important window into the way HIV impacts on the lives of people living with HIV and the wide-ranging inequalities that prevail.

“It is a vital resource that makes for stark reading. We must act on the insights to ensure people living with HIV can live their best lives.”

Matthew Fagg, from NHS England, said: “The NHS is committed to providing high quality care to people living with HIV which supports both their health and wellbeing and tackles any stigma or discrimination that these patients face because of their HIV status.

“People living with HIV have worked with several NHS and voluntary organisations to develop bespoke training materials for healthcare professionals on how to provide equitable services to these patients.”