The Mildmay Mission Hospital in Hackney took part in a campaign rally on Saturday to “Fight HIV Stigma”, as staff cited the taboo around the condition as an obstacle to treatment.
The hospital, which is a charitable medical centre for HIV positive patients, is one of 20 organisations which form a coalition headed by the Terrence Higgins Trust.
A key part of the hospital’s work is to ensure the full confidence of their patients, who have often been subject to discrimination.
Sheila James, the Housing Officer at Mildmay, said that the “torment” which patients have been subjected to in the past can inhibit their willingness to place trust in staff.
“The fear around how people might perceive someone with HIV is an added challenge in our work. Patients can be reluctant to disclose information, especially when they’ve experienced unfair treatment in the past. That can delay progress in our work.”
The rally was part of a wider aim by the coalition group to standardise an approach to HIV which eradicates prejudicial misconceptions, which Sheila believes have an adverse effect on access to support.
“I had one patient who refused to disclose certain things because he had been mistreated by other organisations in the past. Although we were able to help him, we needed information which he was reluctant to disclose. That lack of trust has been built up over years,” she said.
In 2019, Hackney was classed as “Very High” in HIV prevalence, the highest level of qualification, by the Department of Health and Social Care.
“People in vulnerable communities need to be educated about HIV. If people understood it better, we could really change the communication around it,” said Sheila.
The National AIDS Trust (NAT), which is part of the coalition involved in the campaign, released a report in 2021 on “Public Knowledge and Attitudes” surrounding the long-term condition.
The report found that only a third of the public “completely agree” that they have sympathy for people living with HIV regardless of how they acquired the virus.
Over 80% of people surveyed who were living with HIV reported having faced negative judgement from others.
Black participants also reported heightened sensitivity around HIV within their communities relative to other demographics, with many stating that the association of HIV with the Black community was stigmatising in itself.
“It might be that some cultures just don’t have room for HIV- I’ve heard people’s experiences of returning to their countries of origin and being told ‘well we don’t have that here, before you left you were fine’. So there’s a mountain of stigmas waiting to attach themselves,” added Sheila.
The report concluded that homophobia, associations with intravenous drug use and a lack of knowledge about HIV transmission and treatment were significant contributing factors to stigmatisation.
Kat Smithson, Director of Policy and Communications at NAT, told the Hackney Post:
“Stigma is felt differently among communities that are disproportionately impacted by HIV in the UK, including gay and bisexual men, people from Black African communities and South Asian communities,” she said.
“It was fantastic to see a diverse range of people from different communities take to the streets of London last Saturday, and this visibility is vital to make headway in our fight to end HIV stigma. But there is so much more to be done to increase representation so that everyone feels safe and supported.”
The NAT is also working in partnership with Fast-Track Cities to devise an anti-stigma HIV charter, which would allow for organisations working with HIV to apply for an accredited status.
Their aim is to establish uniform policies for organisations to develop a zero-tolerance approach to HIV stigma.
“I’ve seen people live very prosperous lives with HIV – they have a great job and a great family. Some even want to tell people that they’re HIV positive, but are still cocooned by that stigma,” Sheila said.
“It’s better, but we’re not there yet.”
Donations to the Mildmay Mission Hospital and National AIDS Trust can be made here and here.
