When they were diagnosed, HIV/AIDS was seen as a death sentence: the Grim Reaper. But medical science eventually found ways to hold AIDS back. Long-term survivors, some now feeling a survivor’s guilt, recall preparing to die – and remember the many who did.
Words by Mark White
Pictures by Tim Bauer
1 December 2016
Jay Whitehall was just 18 and mourning the death of a friend in The Peel, a gay pub in Melbourne, on a cold winter’s day in 1991. He had been HIV positive for about two years. He was distraught and thought he was going to die.
AIDS had been ripping through gay communities worldwide since the first reports in 1981 of young, gay American men dying of causes usually associated with the elderly or bone marrow transplant patients – rare cancers, pneumonia, catastrophic bodily failure. Treatments were toxic as hell, and no one was expected to last more than five years after diagnosis.
Whitehall’s head was dipped to the ground in despair when a drag queen he didn't recognise – and he thought he knew all of them – appeared before him. She was tall – really tall, he says – with blonde hair, draped in a light blue dress which sparkled in the pale light.
The drag queen grabbed Whitehall by his shoulders, forcing him to look at her. She said, “HIV is the best thing that ever happened to me – I’ve lost three inches off my hips, four inches off my waist and I feel fucking fabulous!” She performed a high kick and leaned in to tell the mesmerised teenager: “Don’t ever take HIV seriously or it’ll fucking kill you.”
“It helps keeping a positive outlook and not letting the Grim Reaper get into your head.”
“It was a really good thing for me to hear,” says Whitehall, now 44, who muses if the mysterious drag queen who disappeared so quickly was an angel. He took her advice to heart and his health has been good since – swollen glands occasionally, which he attributes to stress. “It sounds tacky, but it helps keeping a really positive outlook and not letting the Grim Reaper get into your head.”
The outlook for people with HIV improved dramatically in 1996 with new drugs called protease inhibitors, following 15 years of devastation. The treatment helped raise their T-cell count – a measure of immune system strength – clear of the range where death was a matter of when, not if. People with HIV began living longer.
“You could see – he was really skinny, he looked really unwell.”
Australian health experts even announced an end to the AIDS epidemic in July. “AIDS as a public health threat is over,” Professor Andrew Grulich, of the UNSW Kirby Institute, told Fairfax Media, adding, “Our treatments are so good that most people recover. You get tested early, you get good treatment and people can live a pretty normal life.”
But a generation of long-term survivors from the pre-1996 days – who never expected to live more than a few years – is now approaching retirement, and they face not just the challenges of ageing, but of ageing with HIV. Many will tackle physical and mental health issues, from decades of drug therapies, which are only just being acknowledged.
IN THE DARKEST days of the epidemic when hope was absent, people would just drop out of sight. David Crawford, who thinks he became HIV positive in 1984, managed the AIDS ward at Sydney’s St Vincent’s hospital in the 1990s. He says you didn’t see them become sick. One close friend he knew in the 1980s was studying to be an ambulance officer. Crawford figured that was the reason for months without any contact. Then they met by chance at Redleaf pool at Sydney's Double Bay.
“He didn’t have to tell me what happened,” says Crawford, now 61, talking in a meeting room at Positive Life NSW, the support group for people with HIV, where he works as treatments officer. A box of tissues sits on a chair from the last counselling session he held here. “You could see – he was really skinny, he looked really unwell. I guess that was obvious in my response, the shock.”
“You weren’t expected to live. You might as well make the most of the life you had.”
He took his own diagnosis calmly. His mother catastrophised everything, leaving him level-headed. He could have blown his inheritance on a bucket-list holiday – plenty did – but instead studied to be a nurse. A fellow student died of AIDS 12 months into the course.
Crawford still ponders why he knuckled down to a career. “I think it came from my dad,” he says. “He said, ‘Don’t follow the sheep. Do your own thing. Make your decisions and follow them through. Don’t be swayed by anybody else.’”
Jane Costello, the 55-year-old president of Positive Life NSW, knows at least 20 long-term survivors eking out a living on social security after blowing their savings and pensions shortly after diagnosis. “You weren’t expected to live,” says Costello, who tested HIV positive in 1994. “You might as well make the most of the life you had.” She was given three years; her husband, who is still alive, less than a year.
One hospital was nicknamed The Morgue: “Once you went in, you didn’t come out.”
Crawford would party at Mardi Gras, have a fantastic time, then return to the ward to discover five patients had died that weekend. He cared for Tim Conigrave, who finished his acclaimed memoir Holding the Man there, and his lover John Caleo before their deaths. “There was a roller-coaster of emotions,” he says.
“People were dropping dead like flies,” recalls Whitehall. One Melbourne hospital was nicknamed “The Morgue”, he says: “Once you went in, you didn’t come out.”
Fear and discrimination of people with HIV were widespread, even in the gay community. “Some people would say ‘we don’t really want you here’,” says David Menadue, a Melbourne writer and activist, who was diagnosed aged 32 in 1984. “That was in a gay bar! They got over that, they worked out you couldn’t catch it casually and oppress your own like that. It was a hairy time.”
Californian Tez Anderson set up grassroots group Let’s Kick ASS, to highlight the plight of long-term survivors, which held its third annual awareness day in June. Chapters are springing up across America, and he tells SBS that he’s received an enquiry from Australia.
He remembers his own diagnosis in 1986. He left the clinic and walked up the street and everything was so electric, the sky bluer than it had ever been, the birds louder and the flowers on the hill such a vivid yellow – a hyper-awareness he now recognises as shock.
“It took a lot longer to get my head around the idea that I might well be an old man with HIV.”
Anderson was given two years to live and he began living, he says, like a dying man. “I was going to be the best dying man in the world.” He bought books on dying and went to classes and tried to accept that as a 26-year-old he would not celebrate his 30th birthday. “It took a lot longer to get my head around the idea that I might well be an old man with HIV,” he says. “A long time. I thought I might have maybe five years. We didn’t know. We were the first ones to have this shit.”
He remembers being at a bus stop one day watching people leaving public transport. “They looked like wounded warriors,” he says. “People were in a daze. So many people you’d see on the street, healthy one day, a little bit more decrepit and sicker and sicker and then you stop seeing them, and then their obituary in the local gay paper. It was page after page after page after page of obituaries.”
It’s hard now to comprehend what a difference the 1996 medications made – Anderson refers to the “Lazarus syndrome – returning from the dead to walk again”. Some were even resistant to the very idea of a future, refusing to take drugs which could keep them alive. “It’s almost like ‘I’ve decided what’s going to happen to me’,” says Menadue. One man told him, “I was planning for an early death.” “That was going to be his release. He thought he’d have nice drugs and float off into the ether and everything would be fine.”
Anderson speaks of being “perplexed by survival” and of “AIDS Survivors Syndrome”, a condition he coined after years of anxiety, depression and suicidal ideation. He was watching a show on Iraq War veterans and post-traumatic stress disorder when he realised that explained how he felt; that living through unrelenting decades of being swamped by death was similar.
“‘We went through a holocaust. And we’re meant to put it behind us and pretend it doesn’t exist.’”
Melbourne man Daniel Cardone recognised the same pathology when shooting a documentary, about long-term survivors who moved to the Californian desert city of Palm Springs to recuperate, which screened at this year’s Melbourne Queer Film Festival. Desert Migration features voice-overs of loss and trauma over tranquil images of mundane beauty: the purpling mountains on the near horizon, a stop sign at the corner of Sunny Dunes and Dunes, a hummingbird’s delicate sip of nectar. Each testament adds to a tapestry of a generation’s obliteration.
“The most immediate thing I learnt from making this was how much unresolved grief people still carried with them, literally post-traumatic stress disorder,” says Cardone, diagnosed in 1995, who moved to Palm Springs in 2010. “And it was really not being acknowledged. The mental health fallout from the epidemic is unparalleled and untreated. As Doc, one of the men in the film, says, ‘We went through a holocaust. And we’re meant to put it behind us and pretend it doesn’t exist.’”
Anderson spoke this July about AIDS Survivor Syndrome at an international AIDS conference in South Africa and launched a social media campaign under the hashtag #WhatAIDSSurvivorsNeed. Someone contacted him via Facebook saying he had no idea there was a name for what he was going through, that he wasn’t alone. “He said you just saved my life,” says Anderson, via Skype, blinking back tears. “It was so lovely.”
“A lot of people sold everything and then suddenly they survived.”
He wants an ongoing conversation moving from survival to one of healthy ageing and recognition of survivors. A 2016 study in New York City suggests 26 per cent of people with HIV are long-term survivors, he says. No figures are available in Australia, but the equivalent incidence would be about 7000 Australians.
JANE COSTELLO SAYS many long-term survivors are suffering and living in poverty. “We’ve got that whole ‘End HIV by 2020’ thing,” she says, referring to a national health campaign aimed at producing no new cases by the end of the decade, “and you go, okay, but it’s not saying much about the people living with HIV. That’s about ending transmission… A lot of people sold everything and then suddenly they survived.”
Survivors can face physical and mental challenges. Menadue has had to change medication 14 times since he began treatment in 1989 as the virus became resistant to them. “They were toxic,” he says, “affected my kidneys and liver. They stripped so much fat off my arms and legs – I never managed to get it back.”
“No one dies of HIV anymore, but HIV plays a role in their deaths.”
Even 1996’s game-changer of triple combination therapy introduced fresh risks, raising rates of heart disease and osteoporosis. (Those who began treatment after 1996 may not develop such chronic conditions as long-term survivors, though Crawford believes there will be some negative impact on long-term health.)
Menadue has four major co-morbidities – medical complications – with his HIV, including diabetes and osteoarthritis. In the last few years he’s had cancer, a knee replacement, a shoulder replacement and an ankle fusion.
“No one dies of HIV any more,” he says, “but HIV plays a role in their deaths.” He adds, “If you have a decent T-cell count, you’re probably not going to die soon unless you get run over by a bus.” But people “are experiencing lots of frailty from 55 up, even a bit earlier in some cases. People really have a body of a person 15 years older.”
“I’m faced with premature ageing now.”
One drug led to Crawford developing peripheral neuropathy, destroying nerves in his feet so he couldn't walk. They also caused diarrhoea within half an hour of ingestion and pancreatitis. There was a months-long spell of reactive arthritis earlier this year. He has short-term memory problems caused by the virus replicating in his brain.
“Even though the drugs [now] are really effective, we still live with these really low levels of inflammation,” he says. “When you’re dealing with long-term inflammation, the risk for heart disease is higher.” There could be problems with other organs, such as the kidneys and lungs. “I’m faced with premature ageing now, I’m possibly experiencing some things I’d be experiencing at 70 or 75 now because I’ve been diagnosed so long.”
David Crawford says Positive Life’s research shows 45 per cent of all those with HIV are coping well. Another 40 per cent have a few problems – he puts himself in that bracket – and another 15 per cent are “doing it tough”.
Associated mental health issues are depression, suicidal ideation, anxiety and substance abuse – the latter an area swamped by the recent explosion in crystal meth use, but which includes alcohol and tobacco. Costello says some people stop taking their medication, an act known as “passive suicide”.
One of the biggest issues for those newly infected with HIV is how – and whether – to disclose their status to friends, family and lovers. Long-term survivors have different challenges, says Menadue: “How are you living with the various chronic conditions that you’ve got? What kind of support do you need? People are concerned about being frail in the future. What aged-care options are there?”
Women face extra challenges, says Costello. Drug trials have mostly been conducted on men, who represent about 90 per cent of those with HIV in the West.
“Women with HIV generally experience menopause earlier.”
“This means they’ve no idea on how [current treatments] affects women’s bodies,” she notes. That doesn’t mean the drugs aren’t achieving – hopefully – their purpose, of diminishing the viral load and increasing the CD4 count, but the long-term effects are unknown.
The unknowns multiply with age. “With menopause they have no idea,” she says. “Women with HIV generally experience menopause earlier. We don’t know how hormone replacement therapy interacts with the drugs.” Women are also more susceptible to problems with bone density as they age.
Costello feels blessed to have lived longer than her initial three-year prognosis. Instead of wondering whether feelings of ill-health might lead to her body’s immune system being overwhelmed – she’s stayed in relatively good health – she now wonders if joint pains in her knees might be the first sign of decline.
There is care for people who prematurely age, though it’s not thought any planning is under way for old people with HIV – more than half in Australia will be over 60 by 2020, it’s estimated, though a proportion will have become positive recently.
A federal Department of Health spokesperson tells SBS Online that there is no minimum age requirement for access to residential age care, and that assessment includes “physical, medical, psychological, cultural, social and restorative care needs”.
“Young people don’t understand it. They’ve never seen someone die of AIDS.”
Menadue, and others, think the stories of long-term survivors aren’t being told. He says more could be done to encourage the 50-plus cohort to monitor their health. He praises AIDS organisations for their support, but adds, “I do get the message sometimes that we don’t want to give too many negative messages about the awful bits of living with HIV because it’ll freak out the young.”
Whitehall has had unsettling encounters with younger gay men over his status. He was told to “shut up you stupid old c**t and die a slow AIDS death” by a 19-year-old he argued with online. “Young people don’t understand it,” he says. “They’ve never seen someone die of AIDS.”
He also recalls a university student in his 20s – “really good looking, a really smart young man” – wanting sex without a condom, so he could become HIV positive. (He told Whitehall, “It’s like having my man living inside me.”) “They have no grasp of what HIV and AIDS is and what it did to people. So many people died.”
Desert Migration closes with an inky night falling over the city. Backlit clouds race across the moon. Day breaks with a great yellow rind over the horizon, and life goes on. “I don’t even think about my survival any more,” says Whitehall. “I’ll probably die around 70 like my dad did.”
Read more about World AIDS Day on December 1: