The start of October marked the UN’s International Day of Older Persons which gave me cause to reflect.
I have been living with HIV for over 40 years, am in my mid seventies and face an uncertain future.
This is not a unique experience. By 2030 70% of those living with HIV will be over 50 – both men and women. I therefore wonder, where is the clinical and social support for our future needs? Is anyone planning for this?
The answer is: no.
Modern medication means that HIV is now a chronic manageable condition: you take one or two pills a day, will have a normal life span, can start a family and have sexual relationships without transmitting the virus. However, anyone older living with HIV is not only vulnerable to age related stigma but carries the burden of nearly 40 years of negative media coverage, misinformation, ignorance and may have experienced stigma, discrimination and rejection for much of their lives.
This has had a huge emotional and psychological impact.
The ageing population of people living with HIV fear what the future may hold. The National HIV Story Trust, with whom I volunteer, has been filming survivors from the 80s and common themes have arisen, including that they didn’t expect to survive this long; had been unable to work due to illness; were previously unable to take out life insurance, pensions or mortgages because of their HIV status; were unable to afford their homes when partners died; their long term relationships were not recognised in law; they had been rejected by families and friends; and had been subjected to discrimination, abuse and violence. Such vilification has left painful scars.
They can be forgiven for being afraid of what the future holds, whether they will be able to manage financially or be how they will be treated in care homes.
There is also a growing awareness that all people living with HIV will eventually need complex medical care – including non-HIV co-morbidities and polypharmacy (the use of several medications daily). Clinical understanding of HIV and its long term management is still developing. Current evidence remains insufficient to demonstrate that HIV infection leads to either accelerated or accentuated ageing* but there is some evidence to suggest that the inflammatory nature of HIV may
cause increased fracture risk, osteoporosis, renal, cardiovascular and liver diseases.
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
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