This generation faced an unprecedented challenge during the AIDS epidemic and they rose to the occasion. We would not have effective antiretroviral medication or PrEP today without them taking part in medical research. We would not have achieved gay rights without their campaigning. We would not have the LGBTQ+ and HIV charities and support networks without them. We would not have civil partnership and same sex marriage. They now face an uncertain future. They deserve
better.
We are proud at the National HIV Story Trust to be playing our part to ensure that people’s experiences are used to inform the next steps in addressing the complex care needs of the ageing HIV community. We hope that by recording the experiences of those who survived the 80s, not only will people take the time to understand the sacrifices made by our ageing HIV positive community but also understand their current needs.
We have now completed over one hundred filmed interviews. And their concerns and questions are real. We need to plan for the future – medical, housing, benefits and co-ordination of care. We need strategies for improving psychological wellbeing and to prevent a sense of isolation. We need to harness peer support to educate about their rights, how attitudes and the law have changed. We need to educate and reassure care workers, social workers, housing departments and healthcare professionals about the realities of living with HIV, the lack of risk of infection and what “undetectable” means. We have begun this and look forward to bringing together other players in this space.
The older generation of people living with HIV need our support to secure their future. We need to start the process now and contributors to our organisation will play a key role in this.
Chris Sandford is Director of Education Planning for the National HIV Story Trust and has been living with HIV for over 40 years.
*Sabin, Caroline A.a; Reiss, Peterb Epidemiology of ageing with HIV, AIDS: June 1, 2017 – Volume 31 – Issue – p S121-S128
