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HIV, stigma & discrimination

Roger Pebody

This booklet is for people living with HIV and is about stigma and discrimination. The booklet explains what stigma and discrimination are, makes some suggestions for how to deal with these problems and gives information about your legal rights.

Throughout the booklet are short quotes from people living with HIV about their personal experiences of stigma and discrimination and the way they’ve responded. You may find them useful, but people respond to situations in different ways, so don’t think that you have to react in the way suggested by these examples.

Some of the quotes were collected from feedback to NAM, others from The People Living With HIV Stigma Survey UK (www.stigmaindexuk.org) during their research. NAM is grateful to Stigma Survey UK for permission to reproduce these quotes.

Thanks to the people living with HIV and members of our review panel for their assistance in updating and reviewing this booklet. In particular: Alastair Hudson, FPA; Christabel Kunda, NAZ; Robert James; Irina Lut, FPA; Vincent Manning, Catholics for AIDS Prevention and Support.

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  • HIV in the UK today

    Living with HIV now is a very different experience to what it was ten or twenty years ago. And living with HIV in the UK is quite...

  • What is stigma?

    Stigma means different things to different people. One dictionary’s definition is: “The shame or disgrace attached to something regarded as socially unacceptable.” There may be a feeling of ‘us...

  • What is discrimination?

    Discrimination means treating one person differently from another in a way that is unfair – for example, treating one person less favourably simply because he or she...

  • Myths and facts

    When thinking about stigma and discrimination, a good place to start might be to consider how irrational and inaccurate they are. Stigma and discrimination are usually based on ignorance...

  • What people think about HIV

    This booklet focuses on problems. But it’s worth knowing that the majority of adults living in the UK say that people living with HIV should be treated...

  • Your own feelings about having HIV

    Stigma is one of the main reasons that some people end up having quite negative feelings about themselves in relation to their HIV diagnosis. Since the beginning of...

  • Connecting with others

    No one should have to deal with problems on their own. Talking to someone close to you about how you feel about HIV and its effect on...

  • Other people’s stories

    There are also some websites in which people with HIV have written first-hand accounts of their experiences and feelings. On other websites, you can watch videos of people...

  • Deciding whether to tell people that you are living with HIV

    Because of stigma, many people living with HIV think quite carefully about whether to tell people that they have HIV or not. One way that some people...

  • Sexual partners

    The decision to tell (or not to tell) a sexual partner can be particularly complex. Many people living with HIV have faced rejection from sexual partners, so...

  • Telling people you are close to

    The thought of facing HIV alone is daunting. People often look first to their partner, family members or friends for support. In a 2014 UK survey, over seven in...

  • Dealing with stigma and discrimination

    Experiencing stigma and discrimination can be very painful for anyone. Try not to bottle up your feelings about these experiences. First of all, don’t blame yourself.  Remind yourself that stigma...

  • Your rights in health care

    Everybody living with HIV should go to a specialist HIV clinic to get the best possible treatment and care. It’s also important to be registered with a...

  • Your rights in the workplace

    Most people living with HIV will never experience any problems at work because of their HIV status. But stigma and discrimination can occur in the forms of breaches...

  • Your rights with insurance companies

    Unfortunately, some personal finance products are not available to people who know they are living with HIV. This includes most life insurance policies, private medical insurance, critical illness...

  • Your rights in housing, shops and services

    The Equality Act also makes it illegal to discriminate against people living with HIV in the provision of goods and services, such as when finding housing or...

  • Your rights with the media

    HIV sometimes gets good coverage in the media. At other times the media uses clichés, is inaccurate and expresses prejudice. It can be annoying to find HIV...

  • Getting support and championing your rights

    “I run groups for newly diagnosed people, helping others with their diagnosis also helps me.” There are a lot of organisations to turn to if you feel stigmatised...

  • Religion and faith

    Some faith groups have responded excellently to HIV and provide an important source of comfort, friendship and practical support. However, some faith leaders and faith groups can...

  • Making a complaint

    Most of the organisations listed in the previous pages can help you complain if you encounter stigma and discrimination. Before you make a complaint, it’s worth thinking...

HIV, stigma & discrimination

Published January 2018

Last reviewed January 2018

Next review January 2021

Contact NAM to find out more about the scientific research and information used to produce this booklet.

NAM is grateful to Janssen and Wandsworth Oasis for funding towards the production of this resource. Neither Janssen nor any of our other funders has had any control over the design or content of the booklet.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap
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This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.