People First Charter
People First Charter
About Us
WHY?
We launched in July 2021, during the Berlin International AIDS Society Conference, to promote person first HIV & Sexual Health language.
Language matters. People living with or at risk of HIV experience stigma & discrimination and the wrong language perpetuates this.
People with HIV are not hosts for a virus, vectors of infection, or trial subjects - they have awareness and agency. People with HIV have been prominent in advocating for better medical care, treatment expansion and have been collaborators in the medical progress made. The language used to refer to people with HIV in research and publications, should reflect this!
We recognise that language is not universal, and that there are always challenges when translating words, including medical terminology. However some terms are rife with stigma and blame and should no longer be used, indeed challenged:
- HIV-infected person
- Patients failing treatment
- Serodiscordant
Our language should match our goals: to ensure all people with or at risk of HIV & sexually transmitted infections (STIs) are supported to enjoy the highest attainable standards of health, as is their fundamental human right.
What we do
We ask policy makers, researchers, conferences, journals, & care providers to follow our guidelines & other examples of best practice by:
- Continuously updating our guidance
- Calling for HIV/STI materials to use people first terminology
- Asking reviewers of scientific abstracts & papers to promote appropriate terminology
- Seeking Charter endorsement from individuals & organisations involved in HIV/STI research & care
We aim to promote appropriate language throughout healthcare, science, & beyond! We do NOT seek to tell individuals or communities how they should refef to themselves.
How can YOU help?
Ultimately we hope all communities will use preferred language, but first we must embed consistent, appropriate terminology within our own sector.
Sign up to learn more about how to commit to the People First Charter & help us ensure promote the use of the right words in the right way.
If you are able to translate the guidance please get in touch!
If you hear or see language that is not people first, please (kindly & gently) encourage the use of People First terminology. We ALL get it wrong sometimes and it takes TIME to embed change.
We must also be mindful of the challenges of presenting or publishing in a language that is not your first language.
Types of language
Person-first language
Person-first language simply puts people before their condition, recognising that people are people, and not defined by their condition. In HIV care we should avoid terms like 'HIV-infected people' and use 'people living with HIV'
Some other condition areas also prefer person-first language, for example"
- 'person with diabetes', not 'diabetic person'
- 'person with obesity' not 'obese person'
Other conditions areas prefer identity-first language (see below).
Identity-first language
Some communities feel that person-first language separates people from their condition when it may not be possible or appropriate to do so.
For example, many people in the deaf community see deafness as part of their identity, as do many autistic people. Identity-first language often includes 'people' or 'person' so arguably is still person-centred.
Which language is right?
There are no fixed rules and what is considered 'correct' will vary by condition, over time, and between individuals.
What is critical is to ask the communities with a given condition or characteristic how they prefer to be described and to revisit this regularly.
We will never get it right all of the time but open discussion about preferred terminology will drive understanding and change.
Endorsing organisations
HIV Medicine
International Journal of STD & AIDS
British HIV Association
Journal of the British HIV Association & European AIDS Clinical Society
British HIV Association
International Journal of STD & AIDS
British HIV Association
Leading UK association representing HIV care professionals www.bhiva.org
International Journal of STD & AIDS
International Journal of STD & AIDS
International Journal of STD & AIDS
Journal of the British Association of Sexual Health & HIV https://journals.sagepub.com/home/std
European AIDS Clinical Society
International Journal of STD & AIDS
International Journal of STD & AIDS
Pan-European specialist organisation with the aim of reducing HIV disease burden across Europe
NAM aidsmap
ViiV Healthcare
NAM aidsmap
NAM provides independent, accurate and accessible information about HIV: www.aidsmap.com
Chiva
ViiV Healthcare
NAM aidsmap
Enhancing the health & social wellbeing of children young people & young adults living with HIV: www.chiva.org.uk
ViiV Healthcare
ViiV Healthcare
ViiV Healthcare
A specialist pharmaceutical company 100% dedicated to HIV medicines and research and focused on people living with HIV and AIDS: https://viivhealthcare.com/
PENTA
ViiV Healthcare
ViiV Healthcare
A global, scientific organization dedicated to paediatric research: https://penta-id.org/
British Association of Sexual Health & HIV
International Society for Sexually Transmitted Diseases Research
British Association of Sexual Health & HIV
Leading UK organisation for Sexual Health care & eduction www.bashh.org
International AIDS Society
International Society for Sexually Transmitted Diseases Research
British Association of Sexual Health & HIV
World's largest association of HIV/AIDS professionals www.iasociety.org
Academic Medical Education
International Society for Sexually Transmitted Diseases Research
International Society for Sexually Transmitted Diseases Research
A global provider of innovative & state-of-the-art scientific congresses & medical education programs on infectious diseases
International Society for Sexually Transmitted Diseases Research
International Society for Sexually Transmitted Diseases Research
International Society for Sexually Transmitted Diseases Research
Promoting research on sexually transmitted diseases & facilitating timely exchange of information among research investigators.
UK-CAB
The Lancet Group
UK-CAB
The UK Community Advisory Board if a network for community HIV treatment advocate across the UK https://ukcab.net/
HIVPA
The Lancet Group
UK-CAB
Promoting excellence in the pharmaceutical care of people living with HIV
Gilead
The Lancet Group
The Lancet Group
Gilead is a biopharmaceutical company that has pursued and achieved breakthroughs in medicine for more than three decades, with the goal of creating a healthier world for all people
The Lancet Group
The Lancet Group
The Lancet Group
A global group of medical journals, publishing the best science for better lives
HIV Research & Clinical Practice
HIV Research & Clinical Practice
HIV Research & Clinical Practice
An international journal for clinical research in HIV/AIDS with a focus on patient advocacy.
National HIV Nurses Association
HIV Research & Clinical Practice
HIV Research & Clinical Practice
The leading UK professional association representing nurses in HIV care
4M Mentor Mothers Network CIC
HIV Research & Clinical Practice
4M Mentor Mothers Network CIC
UK peer-black migrant women-led program providing psycho-social support to other women with HIV throughout their pregnancy journey and beyond.
Terrence Higgins Trust
HIV Research & Clinical Practice
4M Mentor Mothers Network CIC
The UK's leading HIV & Sexual Health working to end new HIV transmissions in the UK by 2030, to support people to live well with HIV & to challenge stigma
www.tht.org.uk
Other resources
Salamander Trust
International AIDS Society
International AIDS Society
A great summary of why language matters!
International AIDS Society
International AIDS Society
International AIDS Society
Excellent page on the importance of language.
TheBodyPro
International AIDS Society
TheBodyPro
Brilliant blog on IAS's achievement in removing 'HIV-infected' from the 2023 conference