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HIV stigma and discrimination remain a significant challenge in the UK

HIV stigma and discrimination remain a significant challenge in the UK

London 30 November 2009

New research led by people living with HIV shows physical and verbal harassment is a common reality for people living with HIV in the UK.

Newly published research documenting how people living with HIV in the United Kingdom have experienced stigma and discrimination, and how they have overcome it, makes it is clear that the problem is still widespread within UK society.

The research, conducted over the last 6 months, asked people to report their experiences in the last 12 months.

The findings of The People Living With HIV Stigma Index will be presented on 30 November at the Houses of Parliament.

Andy Burnham, MP, Secretary of State for Health, Annie Lennox, singer, songwriter and founder of the SING Campaign, Professor Jane Anderson, Director for the Study of Sexual Health and HIV at Homerton Hospital, as well as people living with HIV who participated in the research will address the issues of how everyone can help overcome stigma and discrimination.

Key findings show that people living with HIV face significant stigma and discrimination:

  • 21% of people living with HIV had been verbally assaulted or harassed
  • 12% had been physically harassed because of their HIV status in the previous 12 months

The Stigma Index is the first research to comprehensively document the experiences of people living with HIV that is driven by people living with HIV.

The results highlight concerns that stigma and discrimination within some parts of the NHS are denying comprehensive and quality care for some people living with HIV and can create obstacles that impede access to care and support services:

• 146 participants (17%) report being denied health services because of their HIV status at least once in the previous 12 months
• 18%, nearly 1 in 5 people, stated that it was clear to them that their medical records were not being kept confidential, a further 42% of participants felt uncertain that their medical records are being kept confidential

Research has indicated there is a need to address attitudes and develop strategies for change, to educate and support the health service to meet the needs of people living with HIV more effectively.

More positively, the research makes it clear that people living with HIV are at the forefront of confronting and overcoming devaluing attitudes, speaking out against prejudice and challenging stereotypes:

• 45 % of people living with HIV had personally confronted, challenged or educated people who were stigmatizing them 
• 84 % had supported other people living with HIV

The research also revealed the negative impact on individuals living with HIV, many of whom reported low self esteem as a consequence of stigma and discrimination, often involving feelings of guilt and blame in the previous 12 months.

Kevin Osborne, of the International Planned Parenthood Federation, said:

“It is time to give stigma the index finger! As an initiative by and for people living with HIV, this is research that can really make a difference. 

Beyond the significant results, the spirit of the research team shows us how to listen to the people at the heart of the issue.

People living with HIV are telling us how stigma is affecting their lives today, pointing out the issues that need to be addressed, and suggesting how stigma can be tackled in a positive way.

More than 60% of the people who participated in the research said they feel they can influence positive change for the future—the same as the number of people who voted in the last election in this country.”

Annie Lennox said:

“I am delighted to be taking part in the launch of The People Living with HIV stigma Index here in the UK.

"This initiative will become a significant tool to inform not only those who are personally or professionally involved with the challenges of HIV, but it will hopefully also help to influence change.

"Stigma and discrimination still remain prevalent, and continue to be a massive obstacle, this will be a hugely significant first step.”

Secretary of State Andy Burnham said:

"I welcome this report. Effective treatments have transformed the lives of people with HIV and today many more people with HIV can plan for their future with more certainty. But even in the UK, individuals and families affected by HIV can experience stigma and discrimination.

"Tackling HIV stigma is everyone's business.  Working with HIV voluntary organisations, we have funded work on tackling stigma as part of the national strategy for sexual health and HIV. We will carefully consider this report's findings."

Scottish Minister for Public Health and Sport Shona Robison said:

“I’m pleased to see the publication of the results of The People Living with HIV Stigma Index. One of the key aims of the HIV Action Plan in Scotland is to tackle the stigma and discrimination faced by people living with HIV. It is important to ensure that action taken to combat HIV be approached sensitively to avoid any increase in levels of stigma and the Index will provide us with the evidence needed to tackle this issue.”

For further information please contact Jennifer Woodside on 020 7939 8200

About The People Living With HIV Stigma Index

The People Living With HIV Stigma Index is a community research and advocacy initiative developed by and for people living with HIV. 

It is part of a global initiative between the International Planned Parenthood Federation (IPPF), UNAIDS and two international networks of people living with HIV (The Global Network of People living with HIV/AIDS: GNP+ and  The International Community of Women with HIV/AIDS: ICW).

It documents how people have experienced - and been able to challenge and overcome - stigma and discrimination relating to HIV over a 12 month period. 

It is the first robust attempt to establish a baseline for documenting the stigma and discrimination experienced and overcome by people living with HIV in the UK.

867 individuals took part in the The People Living With HIV Stigma Index research, which championed a community research model, and involved people giving responses to an in-depth questionnaire conducted by trained community researchers.

Interviews were carried out in more than 40 locations around the country, from Aberdeen to Portsmouth, including Wales, Northern Ireland, Scotland, Manchester and London.