Stigma, discrimination and lack of understanding about HIV persist 40 years after first reported cases, new research finds 

Forty years after the first cases of HIV-related illnesses and deaths, knowledge and understanding of HIV among the public is often patchy and confused and significant levels of stigma and discrimination remain.  

These are the findings of new research published today from the UK’s HIV rights charity National AIDS Trust and Fast-Track Cities London, the capital’s initiative to end HIV transmissions by 2030 [1]. 

Research agency BritainThinks surveyed 3,000 people and conduced six focus groups in the UK to find out people’s knowledge of and attitudes about HIV.  

Disappointingly, the report demonstrates how HIV remains a highly stigmatised and often misunderstood health condition. Many respondents were confused about how HIV is transmitted, the developments in treatment, and what this means for HIV in 2021. 

HIV: Public knowledge and attitudes found: 

• only 2 in 10 respondents were able to identify the main, or potential routes of HIV transmission, without also identifying an incorrect routes 

• just 16% of people were aware HIV treatment stops HIV from being transmitted. If a person is on effective treatment, they cannot pass HIV on and can expect to lead a long and healthy life 

• only a quarter knew there is medication available to prevent someone from acquiring HIV (PrEP) 

• only a third of respondents fully agreed they have sympathy for all people living with HIV, regardless of how they acquired it, and 

• only a third said it would definitely not negatively impact their relationship with a family member if the person said they were living with HIV.  

Through focus groups, researchers identified three themes that contributed to people’s negative, false and stigmatising views about HIV: 

• people associated acquiring HIV with ‘irresponsible’ or ‘taboo’ behaviours, including condomless sex and promiscuity 

• respondents had low knowledge of how HIV is transmitted, what the treatment is, and what the outcome of treatment is, and 

• negative attitudes towards LGBT people, who are closely associated with HIV. 

Despite this, some respondents had up-to-date knowledge about HIV and most supported policies to end HIV transmission, such as routinely testing blood for HIV in the NHS in England. The research found: 

• significant levels of support for people living with HIV and their experiences. 

Respondents recognised people living with HIV were judged negatively by others 

• they backed policies aimed at improving the rights and wellbeing of people living with HIV 

• increased awareness and understanding among respondents that improvements to treatment meant HIV diagnosis is no longer the ‘death sentence’ it was portrayed as the 1980s and 90s.  

Deborah Gold, Chief Executive of National AIDS Trust, said:  

“It’s intolerable 40 years into the HIV epidemic, HIV remains a highly stigmatised and misunderstood health condition. Outdated and harmful beliefs about HIV perpetuate stigma, discrimination and shame prevent people from taking care of their sexual health or from taking HIV tests. 

“While we celebrate medical advances meaning people living with HIV on effective treatment can’t pass the virus on, this message isn’t getting through to everyone. The public is confused about HIV, how it’s transmitted, and how it affects people living with it. But our research shows people do recognise they have gaps in knowledge and are willing to learn more and to support people living with HIV. 

“This Government’s target is to end new cases of HIV by 2030. Improving public awareness is key to achieving this and we urge the Government to embed this in its Action Plan so the public understands HIV as it is in 2021, and not 1981.” 

Professor Jane Anderson CBE, Consultant Physician in HIV Medicine at Homerton University Hospital and Barts Health NHS Trust, and co-chair of London’s Fast-Track Cities HIV initiative said: 

“Even after 40 years of HIV, we still have a big problem with the public’s knowledge and attitudes. Depressingly, many people still do not know about HIV, are confused by how it’s passed on and are unaware that people taking effective HIV treatment cannot pass on the virus. People do not think enough about their sexual health, which means they are not testing regularly for HIV. Sadly, many people have deeply entrenched stigmatising views about HIV either because they do not know enough about HIV or for reasons that link to sexual orientation, gender or race.  

“Fast-Track Cities London will be looking at this research in-depth and will work with all involved, including the National AIDS Trust, people living with HIV, the NHS, local and regional government and public health experts to end HIV associated stigma and discrimination.” 

Rebecca Mbewe, a mentor and speaker with lived experience of HIV for 24 years, said:   

“It’s tough to see in 2021 so much confusion and mixed attitudes to HIV among the UK public. Sadly, people living with HIV feel the impacts of this in our day to day lives. Experiences of stigma are still all too common and often in places that should feel safe, such as in families, communities and in public services - even in healthcare. It’s clear that misunderstanding and misplaced fear fuel this stigma.   

“At the same time, I’m encouraged by what seems to be a desire among the public to learn more and to support people living with HIV. If we want to change things, we are not banging at a closed door. I am a strong, resilient, woman living well with HIV; HIV does not define me. We must make and take opportunities to improve the quality of information on HIV and to increase the visibility of varied and real human experiences like mine to break down the invisible barriers between us that sustain stigma.” 

Stephen Doughty MP, Chair of the All-Party Parliamentary Group on HIV & AIDS, said:  

“National AIDS Trust and Fast-Track Cities London’s important research shows we still have a long way to go to ensure the public clearly understand accurate information about HIV, and how they can take best take care of their sexual health. It’s saddening that, 40 years after the first reported cases, there is so much confusion among the public.  

“This, in turn, erodes prevention efforts and the wellbeing of people living with HIV who still face stigma in their day to day lives. The APPG strongly recommends that public information be a key component of the Government’s Action Plan to end HIV transmissions by 2030.” 

-Ends- 

For more details please contact Anabel Unity Sale on anabelunity.sale@nat.org.uk or 07384 390 624. 

Notes to editors  

[1] HIV: Public knowledge and attitudes, National AIDS Trust and Fast-Track Cities London, July 2021, nat.org.uk/files/hiv-public-knowledge-and-attitudes-pdf 

HIV: Public knowledge and attitudes details the responses of over 3,000 people and six in-depth focus groups surveyed by BritainThinks. 

National AIDS Trust has previously conducted five surveys into people’s attitudes of and knowledge about HIV between 2001 and 2014. 

Fast-Track Cities London commissioned National AIDS Trust to do a new updated survey to look at where public knowledge and attitudes are in London and the rest of the UK now in 2021. 

About National AIDS Trust  

We’re the UK’s HIV rights charity. We work to stop HIV from standing in the way of health, dignity and equality, and to end new HIV transmissions. Our expertise, research and advocacy secure lasting change to the lives of people living with and at risk of HIV. 

www.nat.org.uk  

About Fast-Track Cities London 

Fast-Track Cities London is part of a global movement of cities to end HIV as a public health threat by 2030. The Mayor of London, NHS England, London Councils and Public Health England jointly signed up to this commitment in 2018. It’s the only place that brings together everyone working to end HIV with people living with HIV, the NHS, London’s Councils, doctors, nurses, public health experts and academics.  

Find out more here: https://fasttrackcities.london/ 

About BritainThinks  

Founded in 2010 BritainThinks is an international insight and strategy consultancy based in London. BritainThinks’ 60+ employees provide insight-based strategic counsel to CEOs, Boards, Secretaries of State and Prime Ministers. BritainThinks is winner of MRS Agency of the year in 2020, an employee owned business and certified B-Corp company. Clients include a range of public and private sector organisations including, The Home Office, McDonalds, the BBC, Activision, LinkedIn, and the Cabinet Office. 

https://britainthinks.com/