It was 42 years ago, in 1982, that the Human Immunodeficiency Virus (HIV) and Auto Immune Deficiency Syndrome (AIDS) first hit the world. At that time there was a fast progression from HIV to AIDS and the terrible illness and deaths that resulted. The life expectancy of people diagnosed with HIV was 1-2 years.
The Infected Blood Inquiry has now reported. Contaminated Factor 8 processed from blood donations in the US was given to haemophiliacs and many got HIV/Aids. The inquiry highlighted the many health and governmental failings made at that time.
There were 94,397 people living with diagnosed HIV infection and accessing care in England in 2022, a rise of 3% from 91,368 in 2021. Due to successful treatment, half of people with diagnosed HIV were aged 50 years and over. Overall, 98% (86,178) were virally suppressed and unable to pass on the virus to sexual partners.
1 in 6 HIV diagnoses are in people aged 50 or over. There is an increase in HIV in Britain among heterosexual women. Older people are less likely to get tested for HIV and so more at risk of it not being detected early. The symptoms of HIV are also more likely to be mistaken for other diseases and the aches and pains of normal ageing. Testing is not routine in the NHS.
Ageing with HIV/AIDS was unimaginable before the development of anti- retroviral (ARTs) medication. Improved treatments are helping people with the disease live longer. Ageing with HIV/AIDS presents many of the same challenges as ageing with other health conditions. It also present extra challenges.
Worldwide, the effects of climate change, pandemics like Covid-19 and food insecurity pose risks to the fight against HIV/AIDS. In Britain risks to people with HIV are also posed by poor pensions and the cost of living, precarious housing and access to healthcare, the increasingly parlous state of the NHS and broken care system as well as shortages and lack of access to anti-retroviral (ARTs) medication.
In 2019 Public Health England stated that gay and bisexual men, Black Africans and people born abroad are disproportionately affected by HIV/AIDS, but one third of people with HIV were women and 52% were diagnosed late.
Services and interventions are underfunded and increasingly difficult to access. Access to them is even more difficult for different populations affected.
Among some older people in particular, homophobia and the stigma of HIV/AIDS being seen as a ‘gay disease’ retain their currency.
Many gay men diagnosed before 1996 lived through periods of ill health with lifelong consequences and expectations of imminent premature death. Many lost loved ones and friends in terrible ways to AIDS. Elizabeth Taylor, an early pioneer against the prejudice and stigma against HIV/AIDs, recently said that she lost 152 friends to HIV/AIDS.
The peak of AIDS deaths was between 1987 and 1996 and this shaped personal, social, psychological and community lives at the time and on into later life.
Antiretroviral (ART) medication has side effects and long-term use can cause liver and cardio-vascular diseases, which are the leading causes of death in older people. Other long-term effects of ARTs are not yet known.
ARTs had a ‘Lazarus effect’ for people with HIV. Many people had left work when diagnosed, on medical advice. This caused financial difficulties and loss of earnings, which means that they also now have limited or no pensions.
Older people with HIV are more socially isolated than younger people. The stigma of HIV/AIDS and prejudices about lifestyle means there is less access to informal care from partners, friends and loved ones. In formal care settings, LGBTQ+ older people are being forced to ‘go back in the closet’ and being separated from partners. With historical stigma around HIV/AIDS, it can be worse for people with HIV.
All older people face challenges with ageing and ageing with HIV/AIDs has these day-to-day challenges - access to appropriate physical and mental health and social care and services, access to medication, cost-of-living, poverty, housing issues, social isolation and ageism.
These challenges are compounded for older people with HIV/AIDS by other worries, including the prospect of serious illness and the fear of full-blown AIDS if they cannot continue to get ARTs medication, continuing public misconceptions of HIV/AIDS and homophobia.
Written by Clare Wilkins for NPC LGBT Working Party
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