‘We were on the edge of death’: 33 years after a life-changing diagnosis

David Crawford is among the first generation getting old with HIV.

When Mr Crawford was diagnosed with the virus in 1984, the then 29-year-old thought he’d been given a death sentence.

Thirty-three years later, it’s more of a chronic disease thanks to the emergence of potent combination antiretrovirals introduced in the mid-90s.

But no one, not Mr Crawford, his peers, the doctors or HIV researchers anticipated the monumental health complications this ageing population would be forced to grapple with.

“We’re sailing into unknown horizons,” said the registered nurse and treatment officer who runs the Genesis support program at Positive Life NSW in Surry Hills for people living with HIV.

By 2020, more than 40 per cent of people living with HIV will be over 60, ageing in a health system that has not planned for the significant burden of their complex physical and mental health needs.

The virus combined with the often deleterious concoctions of early drug treatments has accelerated their ageing process and immune system decay, potentially by more than a decade.

“We’re caught in no-man’s land. We were on the edge of death and we were pulled back with these toxic meds, but the damage was done,” Mr Crawford said.

People ageing with HIV are getting older faster, said Lucette Cysique, lead researcher of the NeuroHIV group at Neuroscience research (NeuRA) and UNSW.

“We’re seeing people in their 60s with presentations [of chronic diseases] we would usually see in people 70-plus,” she said, including cognitive decline, vascular and metabolic diseases.

They are the “D-drug” generation, Mr Crawford said, a reference to the toxic drugs with D-heavy acronyms (DDI, DDC, D4T) used before the introduction of combination antiretrovirals that irreparably damaged patients’ metabolic, nervous and neurological systems.

“They’ve got AIDS-related cancers, blindness, high incidences of cardiovascular disease, musculoskeletal problems, and there are a lot of mental health issues.”

The case that most shocked him was a man he meet at a World AIDS Day event on December 1.

A particularly toxic medication the man had been prescribed in the early 90s had stripped his face and limbs of fat and left him with a distended stomach.

“His legs were like sticks and face was so badly damaged it was skin and bone ??? he told my partner and I that he couldn’t find anyone to go out with him.

“He has to deal with the stigma of HIV, the [psychological] pain that goes with it on top of the side effects caused by the drugs,” he said.

There are growing concerns that this ageing HIV population are at greater risk of a double-barrel effect of cognitive decline and mental health problems, yet little is known how they will present in their elderly years.

Mounting evidence suggests HIV accelerates age-associated cognitive decline with alarming prevalence.

Up to 50 per cent of bisexual and gay men with HIV who are on treatment experience some form of mild neurocognitive dysfunction by their mid-50s, Dr Cysique said.

Up to 30 per cent will develop more serious neurocognitive problems and 2 to 4 per cent will develop early onset dementia.

“We’re wondering what the hell is this going to look like in 10 years?” Dr Cysique said.

“Is mild cognitive dysfunction predictive of dementia later in life [among people with HIV]? We don’t know and we need to find out.”

When Mr Crawford came off his antiretrovirals as part of a trial in 2008, his cognitive function deteriorated to 45 per cent capacity within five years.

“Couldn’t remember four-digit pin, couldn’t remember my own name.

“I had massive headaches, I was incredibly suicidal, I slept for incredibly long periods. I was really sick and came within about six months of doing permanent damage before I went back on the antiretrovirals,” he said.

Social isolation – common among people living with HIV – was a major risk factor for mental illness.

The lifetime prevalence of anxiety and depression symptoms was 40 per cent among bisexual and gay men with HIV, Dr Cysique said.

One-third of people with the virus will develop a stress disorder and bisexual and gay men with HIV have 2?? times the rate of hospitalisation due to mental health and HIV-related neurological complications.

More than one in four have contemplated suicide and 13 per cent have attempted suicide, Dr Cysique said, yet mental health care in was not geared towards the elderly with HIV.

The sudden closure in November of H2M at St Vincent’s Hospital, the only dedicated mental health service in Sydney, was “a catastrophe”, she said.

“There needs to be more than generic health services, and support for community [peer-run support] programs where people getting older with HIV can come together, stay positive and not socially isolate,” she said.

Her search group is bringing together a multidisciplinary team of psychiatrists, psychologists, neuropsychologists, neurologists, neuroscientists and social scientists in and internationally to pool research into HIV and ageing and mental health.

The project aims to guide best clinical practices for treatments and interventions to help support people with HIV to support healthy ageing in people living withHIV.

“The reason I come to work every day is to keep supporting the community and legacy to my friends who didn’t make it,” Mr Crawford said.

“They get me out of bed every day. I’m fortunate to have made it.”

If you are troubled by this report or experiencing a personal crisis, you can call Lifeline at 131 114 or visit lifeline老域名出售.au.

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