The AIDS epidemic gained worldwide attention in the 80s, when supporters, campaigners and advocate transformed HIV from an unknown and fatal illness into a treatable condition.
HIV protesters in the 1980s took the stance ‘silence=death’, demanding better treatments and successfully rallying for both awareness and new treatments, literally chaining themselves to the doors of pharmaceutical companies
December 1st is World AIDS Day, a day used to raise awareness of the AIDS pandemic and mourn those who have died from the disease.
According to the Australian Federation of AIDS Organisations, in 2015 it was estimated that there were 25,313 people living with HIV in Australia. Worldwide, 36.7 million people were estimated to be living with HIV globally, with 46% of them on HIV treatment.
It’s a condition that was stigmatised as something only homosexual men got, but was clarified that anyone – male, female, gay or straight – can contract HIV.
To better understand what AIDS is, there needs to be a clear understanding of HIV (human immunodeficiency virus)
HIV is a virus that attacks the immune system, which is the body’s natural defence against illness. If HIV is left untreated, it may take up to 10 or 15 years for the immune system to be so severely damaged it can no longer defend itself at all.
However, the speed HIV progresses will vary depending on age, health and background.
AIDS is not a virus but a set of symptoms caused by the HIV virus. AIDS is when a person’s immune system is too weak to fight off infection, and they develop certain defining symptoms and illnesses.
These symptoms may include weight loss, fever or night sweats, fatigue and recurrent infections.
AIDS is the last stage of HIV, when the infection is very advanced, and if left untreated will lead to death.
The average age of people living with HIV in Australia is over 45 – and the number of people over 60 is increasing. By 2020, 44.3 per cent of people with HIV will be over 55 years of age.
Clinical Nurse Consultant in HIV and HIV Team Coordinator at Bolton Clarke, Dr Liz Crock has done extensive research into the virus and resultant conditions.
She says that there are more older people living with AIDS today than before, “because of the treatments available, people are living longer, and there are also a lot of long-term survivors who are ageing”.
Because of the condition, many people living with HIV “age” faster says Dr Crock, “some of them are in their 50s and 60s; partly because of the treatment and partly because of having this virus for so long, that it causes chronic inflammation and causes them to age earlier and they experience more frailty and cognitive impairment”.
“We get quite a few diagnosis of people who are over 55”, says Dr Crock, explaining that some people are getting at a later age while other have been unknowingly living with the virus for years.
“The problem is that because people don’t think they’re at risk – often older people and doctors don’t think to test them – they might actually have it for many years before actually getting diagnosed.”
“They may only get diagnosed when they’re very very sick, which means they may have had it for more than 10 years.”
“So that’s a real risk in older people, that they don’t get diagnosed because people assume they’re not sexually active. There’s a lot of misdiagnosis in older people”.
There’s an increasing need for supported care at home and in aged care for people with HIV and AIDS.
As people with HIV are “ageing earlier” there are challenges in getting them adequate aged care services – “access for services for people who may only be 50-something, but are technically too young to access aged care services, it’s a real big issue in this sector.”
To support this, ASHM (Australasian Society for HIV, Viral Hepatitis + Sexual Health Medicine) have created a nation-wide Unit of Competency for Aged Care Workers – a Guide for clinical care and ageing with HIV.
ASHM is the peak body for health-workers working in HIV, Viral Hepatitis and STIs – which includes aged care workers.
With more people with HIV needing to go into residential aged care, and be cared for by nurses and aged care workers, there needs to be an increasing awareness of issues.
Dr Crock said while treatments and services had vastly improved since the days of the AIDS epidemic in the 1980s, client numbers were growing and an increasingly diverse and ageing client base meant a greater need for co-ordinated support.
Strong community partnerships remain critical in the effective delivery of services to support health and wellness for people with HIV and their families.
Dr Crock helped to write the Positive Caring Handbook, a handbook for people caring for older people living with HIV, and a guide for people living with HIV, with Living Positive Victoria.
Living Positive Victoria is a not for profit, community based organisation representing all people living with HIV in Victoria.
The handbook can be downloaded on the Living Positive Victoria website.
Over the past year, Bolton Clarke’s HIV program has experienced a constant increase in demand and service access from 185 clients in 2015-16 to 235 in 2016-17.
Dr Crock said programs supporting people with HIV had evolved over the years and today the focus was very much on supporting wellbeing and independence. The Bolton Clarke clinical support teams work closely with the HIV team and its clients to support clinical care needs.
“Despite treatment successes and prevention tools, there is an ongoing need for integrated community-based programs supporting people living with HIV,” Dr Crock said.
“Our partnership with the Victorian AIDS Council is a rare example of formal collaboration between a clinical service and a community-based volunteer program.
“We need to continue to advocate for this type of service integration, particularly looking for opportunities in the aged care sector.”
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