We Are Still Here

We Are Still Here is a campaign by older women living with HIV. Our aim is to highlight our experiences and priorities. We are calling for:

  • Opportunities to pass on our experiences
  • Peer networks for older women
  • Holistic services and standards of care

We Are Still Here is based on a collaboration between Sophia Forum and Dr Jacqui Stevenson, who carried out research exploring women’s experiences of ageing with HIV in London. Using participatory and creative methods, Dr Stevenson involved women living with HIV in each stage of the research, adopting an advocacy approach to generate new evidence on the experiences of women ageing with HIV in London. Read more about the research in this summary – view below or download here.


We have eight key asks:

  1. Visibility, inclusion and representation of older women living with HIV in research, funding, decision-making and campaigns.
  2. Accurate, accessible and comprehensive menopause information and support in HIV clinics.
  3. Meaningful involvement of older women living with HIV in research, including clinical, social and treatment research.
  4. Research that explores issues that are relevant to our lives and addresses barriers to our participation.
  5. Research results that are disaggregated by sex and gender and report under-representation of women where this is the case.
  6. Full information about HIV treatment side effects and drug interactions and support to manage them.
  7. Improved collaboration, coordination and communication between GPs, consultants, other healthcare professionals and HIV clinics.
  8. Treatment advocacy and peer support training tailored to women, including menopause mentors.