People living with HIV who are being treated with antiretroviral medications are now living well beyond their previous life expectancy.
While this is wonderful news, it presents previously unforeseen challenges. A better life expectancy means there is an exponentially growing population of people over 50 living with HIV who will require complex support. By 2020, the proportion of people with HIV who are over 55 is set to reach 44 per cent. This is substantial increase compared with 1985, when just 2.7 per cent of people with HIV were aged over 55.*
This is further complicated by the fact that some antiretroviral medications cause premature ageing, the implications of which are only starting to be identified and understood. Premature ageing can mean a person living with HIV needs support earlier and for a longer period of time than someone who does not have HIV. Yet because they may be physiologically aged, but not aged in years, it is only as a result of recent policy changes that they may now be considered for the funding and support previously unavailable.
Take for example a woman who is 52, living with HIV and experiencing a loss of function due to stroke, blindness and cognitive issues. Previously, she may have endured a nine-month process to be assessed by the disability system as she did not qualify for aged care support. It was only then that she would have been assessed by an Aged Care Assessment Service as eligible for a Home Care Package. Her complex and multiple needs are such that a basic funded service would not meet her requirements and there were very real concerns that people with similar problems, in the 50-65 age group with chronic conditions, would also fall through the gaps. Under its recently released Homecare Guidelines, the Australian government has removed the lower age limit for access to aged care services for people with special needs. We firmly hope that this policy change will bring the much needed support to those living with premature ageing associated with HIV and antiretroviral medications.
People living with HIV may also experience anxiety about disclosing their HIV status, due to fear of discrimination, harassment or social exclusion. In many cases they may also fear discrimination based on their sexual orientation – in Australia, it is estimated 78 per cent of people diagnosed with HIV are gay men. This can lead to a strong preference to remain living at home and ageing without support.
With HIV a key issue in the lesbian, gay, bisexual, transgender or intersex (LGBTI) community, social isolation of LGBTI seniors living with HIV is also extremely high. Many people in this sector are estranged from family and essentially call their friends, “family”. Thus the effect of ageing with HIV, and in isolation from traditional caregivers (such as family), means that many people ageing with HIV might not access the services they are entitled to at home or they may enter residential care unwillingly or prematurely.
At Care Connect, we have developed programs specifically tailored to supporting the needs of seniors who identify as LGBTI. If we are working with a person living with HIV we liaise and work in partnership with HIV-specific care and support services, as appropriate. We are also working with agencies in New South Wales, Queensland and Victoria to explore some of the issues faced by people living with HIV who are ageing prematurely.
Yet there is much that still needs to be achieved. General misconceptions stemming from the ‘Grim Reaper Days’ have left many with vague knowledge about HIV prognoses, mortality rates and infection risks. There is a lot of fear and that often leads to prejudices and discrimination.
We know that current complex care funding (namely a Home Care Package) may not be sufficient for many people living with the co-morbidities associated with HIV.
We also know that we need more education within the aged care and health sector on issues relating to ageing with HIV. Many medical practitioners are not aware that premature ageing can occur with people who have HIV. The perception is that people are no longer dying hence everything must be alright. There is a lack of understanding that even though the virus is controlled it is not eradicated and that having an immune system that is constantly being challenged even at low levels can accelerate damage (also known as ageing).
Ensuring adequate responses for people living with HIV requires greater education throughout the conventional and community care sectors. We need to work in partnership, to support people with the right range of treatments, in a manner that is sensitive to their needs and past experiences.
Paul Ostrowski is Chief Executive Officer of Care Connect