Is the end in sight for a modern plague?
Don’t panic, the doctor said. You won’t die for at least six months. It was about 1987 and Bruce Kilmister was in Sydney for his import/export business. HIV testing was still sketchy in New Zealand, so he figured he’d have a blood test while he was there.
He didn’t need to be told the prognosis – he’d already seen it inscribed on the emaciated bodies of friends. Since the first diagnosis in New Zealand in 1984, the memorial roll had grown steadily.
‘‘We were going to funerals on an almost weekly basis. It was horrifying. These were beautiful young men at the absolute pinnacle of their careers.’’
Kilmister’s diagnosis roughly coincided with America’s approval of the first HIV drug, AZT.
The failed cancer treatment was rammed through a fast-track approval process. The doses were DAVID WHITE/ STUFF too high, the side effects sometimes horrendous.
Kilmister, 67, remembers measuring one drug into gel capsules, and taking six capsules at a time.
‘‘I’d have to hurry because by the time I’d poured it into the sixth, the first one started to dissolve. Capsules were the only way I could get it down. Because it was such a repulsive medication I would start to gag and throw up before I could get it down. That was twice, three times a day. It just controlled your life. It was endless misery.’’
Kilmister’s partner was also infected. His drug reaction was so extreme even the knowledge of certain death could not force them down. He died.
And all the while, people said they deserved it. It was God’s just punishment for their unnatural acts. As the gay community rallied JASON OXENHAM/STUFF
to support decriminalising gay sex, conservatives hit the streets with banners reading Gay + Gay = AIDS.
It’s no coincidence that homosexual law reform coincided with the emergence of a modern plague which disproportionately affected gay men. The gay scene was in secret bars, sordid sex-onsite venues, far from the reach of health services.
The Health Ministry was among the first to realise it couldn’t combat AIDS if people were afraid to reveal their homosexuality. In 1995, the ministry funded the AIDS Foundation to work to help their own.
Three decades on, the fight continues, but progress appears to have stalled.
THE EARLY DAYS
On the wall above the Wellington desk of HIV nurse specialist James Rice-Davies, there are two photos of Diana, the Princess of Wales visiting patients at London’s St Stephen’s Hospital, in 1987. RiceDavies points to one of the patients – this guy is only 40 and looks like he’s 70. ‘‘These guys were dead a couple of months later.’’
He was there, in a ward that became a hospice.
‘‘It was crippling, to be honest. I didn’t manage very well at all. All you were doing was taking people back and forth to the mortuary.’’
The team would escape to the pub post-shift to try to cope. But relentless death takes its toll. RiceDavies quit in 1989 to work in mental health, before returning when new drugs brought hope.
Infectious diseases specialist Nigel Raymond was also there from the beginning, having qualified in 1985. Some patients contracted pneumocystic pneumonia; others fell prey to HIV-wasting syndrome or dementia.
Before AZT, they could treat the symptoms, but not the underlying virus steadily weakening the immune system. Six months later patients were back in hospital with another problem. ‘‘Basically people were fading away, and their thinking processes were fading away, as well as their strength.’’
It takes a special kind of person to choose to treat infectious diseases. Raymond is quiet, thoughtful, exacting. He says he was never afraid of becoming infected.
Others were afraid. In his 1989 book If I Should Die – Living with Aids, Wellington journalist and politician Tom McLean recalled being put in an isolation room in hospital, where no-one would enter without masks, gloves and gowns. He was even banned from his tarot card reading stall at the city market, after complaints from other stallholders.
Surgeons were afraid to operate. Anything involving blood came with a side order of fear.
AZT brought hope, but patients developed resistance. The progression to AIDS was stalled, but still considered inevitable. But in the mid-1990s, combination therapy changed everything.
‘‘It was quite difficult,’’ Raymond says. ‘‘Some people sold up all their belongings and their insurance policies and travelled the world and gave up their jobs and then they survived. Their friends had died and they felt sometimes really guilty.’’
THE TURNING POINT
Paul Mitcheson was diagnosed in 1996, just as combination therapies were arriving. He was 41, and given two years to live.
‘‘I’d only been to a friend’s funeral that weekend. It was really terrifying.’’
Mitcheson had lost a cousin to AIDS in 1986 – it went to his brain six weeks after diagnosis and he killed himself.
Mitcheson had just moved to London with a new man and was selling the house from his previous 16-year relationship. He figured he’d use the money to enjoy what little time he had left.
Doctors told him to give up the job he loved managing the Crown Prosecution Service’s catering – the stress was bad for his health. So he went on a disability allowance, took a luxury trip to Mauritius and installed a new kitchen in the flat – ‘‘because I thought it would be nice for my partner’’.
The drugs got better and easier to stomach. Two years went by without Mitcheson becoming resistant. The virus was so well suppressed it became undetectable in his blood. ‘‘All of a sudden you realised – perhaps I’m not going to die.’’
The combination therapy had achieved the impossible, keeping the virus permanently under control, preventing it progressing to AIDS.
Raymond remembers the thrill of watching people with kaposi sarcoma, a scabby purple skin cancer common to AIDS patients, recover as the drugs took hold.
‘‘It was amazing to watch in a few cases, that as people’s immune systems got better, the type of cancer that they had actually melted away. You still see people whose immune system is low and we look at the chart and see their immune system getting better and better.’’
‘‘When we finally got triple therapy, it was like life had been handed back to us,’’ Kilmister remembers. ‘‘We could have some hope. It was quite amazing.’’
Kilmister used his extra time to set up peer support organisation Body Positive, finally retiring last week, after 25 years. For 30 years he did drug runs – first to Australia and then to Thailand – to fill his suitcase with drugs that were either unavailable, or impossibly expensive, in New Zealand. The one time Customs stopped him they thought they’d netted a drugsmuggling kingpin.
Mitcheson had cheek implants and fillers to counter the sunken face that is the signature of HIVrelated lipodystrophy, or fatwasting. He went to a Body Positive computing workshop, then started teaching the courses himself. He moved to New Zealand and is still with the same HIV-negative partner as when he was diagnosed.
‘‘I think if it hadn’t been for him, I wouldn’t be here today.’’
STALLED PROGRESS
For 15 years, the news was mostly