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Young people living with HIV will be the first generation who will enter adulthood with the knowledge that their life expectancy can be as long as anyone else’s and understand where they should expect and deserve legal protection under the Equality Act.
Whilst remarkable progress in HIV treatment has been made, young people living with HIV still face stigma, discrimination and barriers to living well with HIV.
Working with young people living with HIV, we created a briefing to help UK governments build a better future for young people living with HIV, alongside a toolkit to support young people to understand their rights.
We asked our young people advisory group why this work has been so important to them and what they hope to see change with HIV policy in the future.
Why should young people be involved in HIV research and policy?
“Young people often bring a fresh perspective, digital literacy and creative approach to solve problems. They can help design research methods that are more accessible and acceptable to their appearance such as using social media for outreach or mobile health for data collection. When young people are involved, they are more likely to advocate for and implement policies in their community, increasing overall awareness and adherence to evidence-based practice.”
“It adds other views, and other points someone else wouldn’t have thought of. It all gives ideas in the way to get people would more likely be interested in engaging with.”
“It is important for young people to be involved in HIV research and policy because they are directly affected. Young people being directly affected means that it reflects real needs rather than adult and professionals assumptions.”
“Young people also have lived experiences and insight such as stigma, peer pressure, relationships and barriers in healthcare. These perspectives become vital when making research questions, policies and programs more realistic and effective. It also strengthens trust and participation as it shows young people are heard and involved in decision making.”
“It feels like I have a voice, that my experiences matter and can help improve things for people after me.”
What are your priorities for improving the lives of young people living with HIV?
- “Youth focused confidential healthcare with flexible options”
- “Reduce stigma in healthcare”
- “Support for education and financial stability”
- “Mental health healthcare and connection opportunities”
- “Let young people lead decisions”
- “To decrease stigma and increase awareness”
- “Psychosocial support and mental health”
What would you like to see change going forwards?
- “More awareness of HIV as a health condition, rather than ‘just’ an STI”
- “More meaningful involvement with youths living with HIV even in less populated area than London”
- “Let young people lead and shape decisions”
- “People being more open to talk about HIV and sexual health”
How has your experience in the advisory group been?
- “It felt great feeling being a part of something and informing other people things that it’s not always common knowledge about.”
- “I found it really interesting being involved in policy, as it normally feels like someone far away from my experiences has made the rules.”
The vision of the group
The advisory groups’ vision for young people is that they all receive comprehensive, holistic support throughout all life stages of life before, during and after the transition to early adulthood.
Young people living with HIV should be able to easily access community, and support tailored towards their age group (and other intersecting identities) that will help them navigate new responsibilities, opportunities and relationships.
Young people living with HIV deserve to be understood in their entirety and have their psychological, emotional and socioeconomic needs met.
We are extremely grateful to all the young people who participated and shared their experiences living with HIV – without them this work would not be possible. We’ll continue to advocate for the rights of everyone living with HIV, including young adults, to ensure everyone can live well with HIV.