We Can All Help To End HIV Stigma

These are just some of the many examples of national and local government, charities and people living with HIV working together to tackle stigma. But the evidence shows that we must all do more to make testing more acceptable and accessible, get more people treated early and protect others from acquiring HIV.
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The red ribbon worn by many on World AIDS Day earlier this month is a powerful symbol of our fight to eliminate HIV and AIDS - and also of solidarity and support for people living with HIV.

This sends a vital message - because too many people living with HIV in the UK still face stigma and discrimination - from friends and family, at work and even at the hospital or GP surgery.

This time last year the results of the People Living With HIV Stigma Index UK 2015 - a survey of more than 1,500 people living with HIV in the UK - revealed that stigma remains a significant obstacle for many people living with HIV.

While more than two-thirds of people felt in control of health and optimistic about the future, around half of the participants reported feeling shame, guilt or self-blame in relation to their HIV status, and one in five had felt suicidal in the previous year.

About one in eight people had decided not to apply for, or turned down, employment or a promotion due to their HIV status. And experiences of stigma in health care were common, with one in eight participants avoiding seeking care in the past year.

In the UK we have made great progress in changing the face of HIV from a death sentence in the 1980s to a treatable, manageable condition that doesn't have to stand in the way of a long and healthy life.

We have also introduced anti-discrimination laws which protect the rights of people living with HIV, among others. Yet if we fail to address the stigma that still surrounds HIV, we will also fail to meet our national ambition to eliminate the infection entirely.

Public Health England's (PHE) work to combat HIV forms part of a national strategy to prevent more people becoming infected with HIV, and to support more people to get tested and to know their HIV status.

Knowing your HIV status is important for everyone, but it is particularly crucial for groups of people at higher risk - specifically gay and bisexual men and black African men and women.

Getting tested is the key to beginning effective treatment for people who test positive, as well as reducing the transmission of the infection to others.

The sooner someone starts treatment, the better it is for their health. Knowing their HIV status can motivate people who test negative to change potentially risky behaviour and reduce the risk of future infection.

Yet new data from Public Health England shows that whilst the vast majority of people living with HIV are diagnosed and receiving life saving therapy, there remains a high proportion of people unaware of their HIV infection, and only three in five diagnoses are made at the early stages of infection, before HIV has started to damage the immune system.

Stigma can discourage people from getting tested for HIV, and delay essential treatment, as well as counselling and other forms of support.

Tackling stigma is therefore important in order to make testing more acceptable and accessible to everyone, particularly groups at high risk. It is also important to improve the quality of life for people living with HIV.

How we are working to combat stigma

Those that took part in the survey felt that education and awareness campaigns were key to challenging the stigma and discrimination experienced by people living with HIV in the UK today - and in the past year we have made some real progress on this.

It Starts With Me is a national campaign that works to prevent HIV by bringing together real people and their experiences of HIV. The main focus of the campaign is improving attitudes and encouraging uptake of testing and condom use.

Survey results show that the 2015 campaign was successful in reaching those at high risk with message about testing - 78% of men who have sex with men and 76% of black Africans agreed that the campaign ads made them think it was normal to get tested for HIV.

And in November last year, PHE launched the HIV Innovation Fund to support innovative local projects working to reduce HIV-related stigma and promote testing in people at high risk. Last year we funded seven projects across England, and this year we are supporting 13 projects.

For example, Laugh Out Loud against Stigma (LOLS) is exploring the use of comedy to address stigma and late HIV diagnosis among black African communities in London, while OutREACH Cumbria's In the Community project is working to make HIV testing an everyday occurrence within community pharmacies in a rural area with high rates of late HIV diagnosis.

These are just some of the many examples of national and local government, charities and people living with HIV working together to tackle stigma. But the evidence shows that we must all do more to make testing more acceptable and accessible, get more people treated early and protect others from acquiring HIV.

Five things everyone can do to combat HIV stigma:

  1. Know your facts about HIV: anyone can get HIV regardless of their gender, religion on sexuality, HIV is not passed on through personal contact such as touching or kissing or sharing of cups and utensils, people with HIV who are on effective treatment with an undetectable viral load cannot pass on the virus (you can test your knowledge with the HIV Aware quiz)
  2. Make HIV testing part of your routine sexual health check-up. Getting tested is easy and knowing your status is essential in order to get effective treatment and prevent further transmission of the infection.
  3. Talk about people living with HIV in a positive way, raise awareness among your friends and family and challenge discriminatory attitudes towards peoples and communities affected by HIV.
  4. Be supportive if a friend, family member or colleague discloses their HIV status. Encourage greater visibility of people living HIV though the promotion of positive images and supporting role models.
  5. Use your voice and passion to advocate for positive change in the lives and wellbeing of those living with or affected by HIV, perhaps by getting involved with local or national charities that support this mission.

With thanks to Valerie Delpech, Head of national HIV surveillance at Public Health England, for contributing to this blog.