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Working together to get London to zero HIV stigma

22nd January 2020

London has always taken an innovative approach to tackling HIV.

London has got to where it is today by a mix of highly effective treatment, some of the best testing and diagnosis in the world, a combination of prevention methods and the huge range of organisations in London supporting and advocating on behalf of people living with HIV.

Despite all the advances in clinical care, we know that for people living with HIV life is often difficult because of stigma and discrimination. HIV stigma is often based on an outdated idea about HIV and made worse by discrimination because of gender, sexuality, race, sex work, drug use, immigration status and more.

Here’s what we know from Londoners living with HIV:

  • 1 in 8 have disclosed their status only in a health setting[1]
  • 1 in 2 people reported mental health problems, twice the rate of the general public[2]
  • 1 in 4 worry about being gossiped about[3]
  • 1 in 10 avoid family or social gatherings[4]

The stigma around HIV has a huge impact on the quality of life for Londoners living with and affected by HIV, playing a part in poorer mental health such as emotional distress, shame, depression, reduced self-esteem, anxiety and thoughts of suicide.

Stigma and discrimination also effect whether people come forward for testing and diagnosis and stick to their treatment plan.

We know that in order to get us to zero new infections, zero preventable deaths and 100 per cent of people living well, we must fight stigma. Clinical care and the improvements in life expectancy alone are not enough and we need to make sure we do everything we can to eliminate HIV-related stigma in our city.

The London Fast-Track Cities initiative has secured a pot of funding to address stigma as part of its work, with an ambition to get London to zero HIV stigma by 2030.

We know that lots of work is already happening so we want to find out where are the gaps, what else can London do and how can we all work together.

What will a zero stigma city look like?

London must be a city where people living with HIV are free of internal stigma, which prevents them from living a full life, creating a safer place to live and thrive, where people feel fully accepted by society and live well.

We must make sure the places and environments people go to are free of stigma. All London organisations must be HIV friendly, with an environment, staff and policies that do not discriminate against people with HIV. If discrimination is experienced, organisations must be fully accountable with a clear procedure for reporting in place so that people feel confident they will get help and support.

Finally, in the future our city must be a place where everyone understands what living with HIV means in the 2020s and supports people living with HIV to talk openly about their status.

What have we done so far?

We have worked with a group of people to draft plans about how to make London an HIV friendly city by 2030.

Now we need your views on the three areas:

  1. We think we should tackle internal stigma or self-stigma with peer support and resilience building training.
  2. We think we should tackle external or public stigma by using an umbrella brand that supports a social movement of people telling their own stories.
  3. We think we should tackle organisational stigma with a charter which celebrates HIV friendly organisations. We would start with the NHS as one of the biggest employers in London and one of the Fast-Track Cities partners.

We have come up with a vision for how things should be done where people living with HIV are at the centre of all the plans.

What next?

We want to have the conversation with people who live, love and work with people with HIV about what it takes to make a city truly HIV friendly – we want to hear from you.

We need people’s views on these plans:

  • Are these the right priorities?
  • How should we tackle these different areas?
  • How can Fast-Track Cities add value to all the excellent work already happening?

Please read the draft stigma plans on this website and send us your views and ideas.

We are also happy to come and present at your forums or events, email us to invite us along at hlp.londonftci@nhs.net.

Make sure you register for our face to face engagement event on Friday 31 January at Coin Street Waterloo here.

If you already do work that tackles stigma then please take a couple of minutes to complete our fact-finding survey.

 

References

[1] Public Health England Positive Voices survey 2017

[2] Public Health England Positive Voices survey 2017

[3] The Stigma Index 2015

[4] The Stigma Index 2015

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