Stigma and discrimination

a man looking distraught

Despite huge progress in care and treatment for people living with HIV in the last three decades, reducing the stigma around HIV has taken longer and proven more difficult to address.

HIV is still a stigmatised illness and discrimination and prejudice remain issues of concern to people living with HIV. Fear of discrimination and actual experiences of injustice can have a very profound effect on individuals, which in turn can have significant implications for society as a whole.

Stigma often prevents people being open about their condition and inhibits the kind of open discussion that is needed to challenge society’s lack of knowledge and understanding about HIV.

If you are living with HIV and are concerned about stigma or discrimination you can get more information on myHIV.

  1. The evidence
  2. What can be done?

The evidence

A 2010 survey found that 66 per cent of the public agree that there is still a great deal of stigma around HIV. A similar number also believe more needs to be done to prevent discrimination. However, general awareness and knowledge levels among the public can still be startlingly low. People living with HIV regularly report being treated badly, receiving poor service or being discriminated against because of their HIV status. Significantly and disappointingly, this discrimination is most often encountered in public services and the NHS in particular.

A 2008 survey of people with HIV in London found that one third of people encountered discrimination because of their HIV status. Of those reporting discrimination, half said it had come from a healthcare worker: one in four from a dentist, one in five from a GP and one in ten from hospital staff.

We have supported people who have been bullied, intimidated and even threatened with violence because of their condition. Stigma and prejudice can compromise people’s personal relationships and fear of disclosure can prevent them from getting the kind of basic support that other people living with long term conditions can expect from family and friends.

The fear and isolation this creates can have a profound effect on a person’s physical and emotional health. In many instances, people living with HIV can require more support in dealing with the stress and anxiety caused by HIV stigma, than with the physical impact of the infection. Mental ill health and in particular depression is a common experience for people living with HIV and a 2012 study showed one in four had a current depressive disorder.

People living with HIV are often fearful of disclosing their status in employment or recruitment settings and many face barriers to securing or remaining in employment as a result. Similarly, many people are reluctant to disclose in settings such as with their GP or dentist, and this is turn compromises the level of support they can expect from public services.

From a public health perspective, HIV stigma also acts as a major barrier to HIV testing. It discourages people from coming forward for testing and can be a barrier to doctors recommending tests to people who may be at risk. This undoubtedly has an impact on late diagnoses in the UK which are currently at 50 per cent.

Legislation, such as the Equality Act (2010) is most welcome in this area and gives people living with HIV some means of redress. However, it does not solve the underlying problem and taking legal action after discrimination has occurred is an arduous and potentially costly exercise.

What can be done?

The public sector is the UK’s largest employer, with the NHS the largest single employer, so it holds considerable potential to not only improve the delivery of services to people living with HIV, but to also increase HIV awareness and tackle discrimination.

A great deal more could be done within the health service in particular in terms of training staff on HIV related stigma rather than focussing on simply HIV infection control. We would welcome a Government initiative, working in partnership with people living with HIV and representative agencies, to develop a robust campaign to challenge HIV stigma and increase awareness in public services.

Current cut backs to the legal aid budget could dramatically reduce the scope for people living with HIV to take action against service providers or discriminatory employers. We are concerned that this in turn runs the risk of devaluing equalities legislation and have spoken out against these changes.

Campaign with us

We are campaigning for increased training for teachers to deliver sex and relationships education to raise awareness of HIV as well as other sexual health issues among young people.

We have also campaigned to reform healthcare employment restrictions for people living with HIV and we welcome the review of this guidance by UKAP, the Expert Advisory Group on Aids and the Advisory Group on Hepatitis. We urge the Government to act swiftly to change these restrictions so that highly specialised healthcare workers are no longer needlessly lost to the NHS.

You too can help to reduce stigma and discrimination by talking openly about HIV, challenging misinformation and prejudice and supporting us by becoming a member and helping us to campaign.

 

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stephen fry

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