AIDS: The end of an epidemic?

by Joanna Wane / 01 June, 2017
Tonya Booker, 48, didn’t get tested for HIV until days before she died, because she wasn’t considered “at risk”.

Health campaigners say the spread of HIV in New Zealand could be virtually eliminated within the next decade. Yet the number of transmissions is increasing and the chances of being exposed to the virus are higher than ever before. Joanna Wane asks why.

In the end, it was the physiotherapist who called an ambulance. The physiotherapist Tonya Booker had been sent to by a specialist who thought she was hyperventilating and needed to be re-taught how to breathe.

The reality was she couldn’t breathe. By the time Tonya was transferred to Auckland Hospital’s intensive care unit, her hard, crackly lungs were so damaged from advanced fungal pneumonia that it wasn’t possible to intubate her because pumping in extra oxygen would have torn the lining to shreds.

Even then, it wasn’t until four days after the 48-year-old was admitted – despite two years of unexplained health problems – that she was tested for HIV. “They called in the family to tell us a diagnosis had finally been made,” says Tonya’s mother, Carolyn. “But they said it wasn’t a death sentence anymore; she would lead a long and normal life. They just needed to clear the infection in her lungs and start her on anti-retroviral drugs.

“What we know now is that’s the kind of pneumonia you generally get in last-stage Aids. And that’s what she was. Not HIV-positive but last-stage Aids.”

A stone inset with a plaque marks Tonya Booker’s grave: “Daughter, sister, aunty, partner & friend”.

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You could say Tonya’s death was one in a million – the total number of people who died worldwide from an Aids-related illness in 2014. But in New Zealand, where HIV has gone from a terminal diagnosis to a manageable health condition, dying of Aids is rare, and she was one of only seven claimed by the disease that year.

Her last-minute diagnosis solved the puzzle, medically, but came too late to save her life. The only saving grace was that she survived long enough to be told her partner and eight-year-old daughter had been tested for HIV and were both clear.

Carolyn and Ron Booker say it wasn’t only a blind spot in the health system that failed Tonya, the eldest of their seven children, but complacency, tunnel vision and the stigma around what’s still seen as a dirty sexual disease. They describe losing their daughter to Aids as “beyond belief” in a country like New Zealand. A Wellington school teacher in her 50s who was HIV-positive and hospitalised for three months around the same time as Tonya was luckier, if you can call it that. She pulled through, but was diagnosed so late she suffered permanent damage and has been left partially blind.

“Women are forgotten,” says Carolyn, who’s campaigning for HIV screening to be adopted as a routine diagnostic procedure – a position widely supported by both specialists and advocacy groups. A study at Auckland City Hospital found universal testing could lead to earlier diagnosis in 30 per cent of new cases and produce potentially large long-term cost savings. The initial blood test costs $20.

“If you’re a homosexual man, you’re asked if you want a test every time you go to the doctor,” she says. “Yet we’re the ones who are going to get caught from a night of unprotected sex, as Tonya was. That’s why we call it an unnecessary death, because this didn’t have to happen.”

 

Tonya was a personal chef for former Harrods owner Mohamed Al-Fayed in London, before moving to Sydney, where she worked in top-end catering. In 2004, she came down with what seemed like a bad case of the flu. At first, doctors thought she had giardia and it took her a while to come right. But she shrugged it off, moving back home to Auckland, where she set up her own catering company, met her partner Ben, and gave birth to their daughter Poppy, as the virus – which would remain undetected for another decade – quietly settled in to wait.

When the infection suddenly ramped up its siege on her immune system, an array of symptoms left everyone perplexed: severe nose bleeds, mouth ulcers and oral thrush, stomach pains, breathlessness, anxiety, migraines, extreme fatigue. Within six months, she lost 10kg. Her gall bladder was removed and then her tonsils, to rule out cancer. Blood tests repeatedly indicated some kind of immune problem. But because Tonya wasn’t considered “at risk” (a gay man, a sex worker, an intravenous drug user or an immigrant from Africa), no one thought to test for HIV.

She was still busy texting instructions from her hospital bed for a big catering job when her parents got a call from the hospital telling them she hadn’t responded to treatment and wasn’t expected to recover. She died three days later.

Dr Peter Saxton, the inaugural New Zealand Aids Foundation Fellow at Auckland University’s School of Population Health (left), and the foundation’s executive director, Jason Myers. The Ending HIV campaign aims to eliminate new transmissions by 2025.

Tonya’s death marked a cross-road in the evolution of the “gay plague” in New Zealand, which claimed its first fatality in the mid-1980s after a man who’d been infected with HIV in San Francisco came home to New Plymouth to die.

While hardly ground zero for Aids in terms of the numbers infected, we were early adopters when it came to taking on a disease that’s caused some 40 million deaths across the world. When little Eve van Grafhorst was kicked out of kindy and shunned in Australia after being diagnosed with the HIV she contracted from a blood transfusion at birth, Kiwis welcomed her as one of their own. One of the first countries to report a decline in Aids due to a raft of socially progressive policies – including homosexual law reform and a pioneering needle exchange scheme – New Zealand still has one of the lowest prevalence rates of HIV.

Until the mid-90s, when anti-retroviral treatment replaced the scorched-earth approach of azidothymidine (AZT), a positive diagnosis meant an awful wasting decline, with little hope and little other than palliative care. By the time New Zealand Aids Foundation (NZAF) executive director Jason Myers was coming out in Auckland’s gay scene in the early 2000s, HIV wasn’t exactly a minor inconvenience, but it didn’t stop people leading relatively normal lives. He’s heard the horror stories, though.

“I have friends who went to a funeral every two weeks for two years; there were entire networks obliterated by death. I can’t even begin to imagine what that would have been like,” he says. “Today, rather than walking down Ponsonby Rd and seeing someone emaciated with lesions, anyone you see could be living with HIV. But that also plays a part in the silencing of HIV, even though it’s still very much around us. And there’s real concern that the framing of ‘the end of Aids’ means funding has gone out the door.”

In parts of the United States, cuts in health spending have already led to an explosion in new infections in some states, such as Miami. The HIV-positive population here is comparatively tiny, estimated at about 3200 people, but a record number of new diagnoses in 2015 marked the fourth annual increase in a row. What we’re now facing, Myers says, is a resurgent epidemic with the potential to quickly spiral out of control.

“In the 80s, you had to go to a bar or answer an ad in the Herald, then wait three weeks for a reply,” he says. “Now I can turn on my iPhone, go on any number of apps and be in a stranger’s bedroom in six-and-a-half minutes. So that not only drastically speeds up the possibility of one-on-one interaction, but what that means for the whole network – and how connected we all are through sex – is that it’s fertile ground for the spread of disease.”

In a recent Australian survey, the record for the most sexual partners went to a heterosexual man. But, on average, homosexual men had more. In Auckland, “chem-sex” parties have become part of the gay scene, where drugs like meth are used to enhance the intensity and reduce inhibitions: ripe conditions for risky behaviour. Most concerning of all is the number of people who don’t even know they’re infectious. Among gay or bisexual men, it’s estimated the rate of undiagnosed positives is as high as one in five.

Free screening tests are available at NZAF clinics around the country and also at a handful of sex-on-site venues in Auckland and Wellington, as part of a pilot programme with peer-support organisation Body Positive. Myers says some of the hardest people to reach are married men who go home to their families and are “completely disconnected” from the gay community. And even three decades after decriminalisation, one 2014 survey found half of men who have sex with men hadn’t told their GP they were gay or bi.

“You don’t need to scratch far beneath the surface of New Zealand society to find an element of that hard-core conservatism remains.”

In February, the foundation launched a bold “Ending HIV” campaign, with a string of initiatives aimed at eliminating new infections by 2025. That same month, the newly crowned Mr Gay New Zealand, Charlie Tredway, caused a furore by challenging the accepted definition of consensual “safe sex” when he was outed for not always using a condom, despite being HIV-positive.

The idea isn’t easy to wrap your head around, but anti-retroviral therapy is now so effective it can reduce the viral load of HIV to an undetectable level – essentially meaning a person is no longer infectious. In the international Partner Study, involving a thousand gay and straight couples, not a single transmission of HIV has been recorded since monitoring began in 2010 where the positive partner has an undetectable viral load and condoms aren’t always used.

The catch is that, in New Zealand, diagnosis doesn’t automatically get you on funded drugs. Only patients who are symptomatic or whose CD4 count (a measure of how well the immune system is working) has dropped below a certain level qualify for subsidised treatment. And that treatment is expensive. In the past six years, drug costs have skyrocketed, doubling to $32.8 million in 2016.

Epidemiologist Peter Saxton, New Zealand’s only fulltime HIV researcher, says the refusal by drug-funding agency Pharmac to make anti-retrovirals available immediately on diagnosis is so out of step it’s becoming an “international embarrassment”. A funding application to urgently expand access to anyone who’s HIV-positive was recommended with a medium priority when first considered in 2014. But there’s been no movement since, despite another formal request in November 2015.

Saxton says it’s estimated a 20-year-old diagnosed with HIV could cost Pharmac more than $800,000 over a lifetime of treatment. “That’s totally avoidable if we frontload part of that into prevention. I don’t understand why it’s not a high priority; it makes no sense fiscally. Given the health benefits, it’s a no-brainer.”

Infectious disease specialists North & South spoke to agree with him. More contentious is the use of a preventative daily pill that stops someone becoming infected with HIV in the first place. PrEP (pre-exposure prophylaxis) works: studies in Australia suggest it could reduce new infections by almost half if made available to gay and bisexual men most at risk of HIV (for example, those with a high number of sexual partners and low condom use).

However, it’s also seen as undermining condom use, which protects against other sexually transmitted infections, including syphilis and gonorrhoea – both of which are on the rise. And condom use has slipped in the gay community, although it’s still higher than among heterosexuals.

A paper published in the New Zealand Medical Journal last December, titled “Auckland: City of Syphilis?”, reported a 78 per cent increase in cases of infectious syphilis seen at the Auckland Sexual Health Service in 2015, compared to the previous year. And contracting syphilis increases both the risk of being infected with HIV and the chances of passing it on.

Although PrEP (branded as Truvada) has been approved in the UK for preventing HIV in both men and women, it’s pricey and not available on the National Health Service yet. However four sexual health clinics in London that have seen a dramatic fall in new infections among gay men put that down to cheap generics being bought online.

In Auckland, ethics approval has been sought for a two-year PrEP pilot study involving 150 high-risk gay and bisexual men, in part to help build a case to present to Pharmac. In the meantime, sexual health services are under review and Saxton’s own research funding has been cut. “There’s a sense that the threat of HIV is diminishing, and that’s a rational response to new treatments. But the likelihood of being exposed to HIV is actually higher than ever before.”

In the UK, modelling suggests it’s possible to drive the epidemic below replacement level within 15 years, through a renewed focus on prevention, testing and treatment. Saxton thinks New Zealand could do it sooner. “The opportunity is there, if we act quickly and don’t squander the legacy we’ve inherited from our public-health champions of the past. For the first time in a decade, we have all the tools to put on the handbrake and be among the first countries in the world to turn this around.”

Eve van Grafhorst was infected with HIV from a blood transfusion at birth. After prejudice in their local community drove the family out of Australia, they were embraced by New Zealanders, who adopted Eve as one of their own. When she died at the age of 11, in 1993, almost 700 people attended her funeral in Hawke’s Bay.

At a seminar series run by advocacy and support group Positive Women last year, one of the presentations was “Growing Older with HIV”. In 2018, the group’s national co-ordinator, Jane Bruning, will have survived with the virus for 30 years.

Bruning was working for a tour company in Tanzania when she went for an HIV test after an ex-partner died of Aids. She vividly remembers a nurse at the local hospital leading her over to a series of posters on the wall, showing a buff African man getting skinnier and skinnier until he ended up in a hole in the ground. “That was what happened: you got skinnier and then you died.”

You wouldn’t know it to look at her, but the brutal side effects of AZT left Bruning with some permanent damage, including wasting in her arms and legs, and peripheral neuropathy, which means she loses feeling in her feet. She hasn’t been in a relationship – “not even on a date” – since she came back to New Zealand in 1994 with her son, now a healthy young man in his 20s. But when she looks in the mirror, and thinks about all the others who have died, she’s grateful for the wrinkles.

Positive Women has more than 200 clients on its books nationwide. Many are the only HIV-positive woman in their town (see The Shadow of a Secret, page 52). After Tonya Booker’s death, Bruning supported the family’s call for universal screening, and successfully campaigned for a review of the Ministry of Health’s recommendation against HIV-positive mothers breastfeeding their babies. That protocol still stands, because the possibility of transmission through breastmilk can’t be ruled out, but guidelines were softened to support women who are still committed to breastfeeding despite the risks. In African communities, where breastfeeding is an important cultural practice, HIV carries an enormous stigma and a woman is instantly assumed to be infected if she formula-feeds her baby.

Screening during pregnancy (rou-tinely offered since 2005, too late for Tonya Booker) occasionally returns an unexpected positive, but pregnant women who have a low viral load can now opt for natural childbirth rather than be required to have a caesarean. Newborns are given anti-retroviral drugs for the first few weeks of their life. Figures from 2015 record 134 babies born here to HIV-positive mothers since 1998; none have tested positive. Last year, in a first for New Zealand, an HIV-positive mother gave birth at home, supported by a midwife – and then fed her baby on gifted breastmilk, supplied by a community of lactating mothers via Facebook.

Marama Pala, who founded INA (Maori, Indigenous & South Pacific) HIV/Aids Foundation, is part of an international research panel looking at better medication options for mothers and their babies. Last year, she won a Red Ribbon Award at the UNAIDS International Aids Conference in South Africa for her work with indigenous people through INA, which supports an HIV-positive population of about 300 in the South Waikato and Bay of Plenty.

Her own two “healthy, strong, HIV-negative children” were born after she contracted HIV at the age of 22 from Kenyan musician Peter Mwai – the first person to be convicted in New Zealand of intentionally spreading the virus. Pala says misconceptions persist around how HIV is transmitted and there’s still a lot of fear and prejudice towards what’s seen as a shameful, dirty disease. One woman was told by a Winz worker that she should have just kept her legs shut.

“There’s still a sense of hopelessness, of going home to die,” she says. “It’s not that the doctors aren’t telling them [the right information]; it’s understanding what the doctors are telling them and interpreting that in a way that they can grasp the diagnosis and how to go on to live a productive life.”

While most of the HIV outpatients Dr Steve Ritchie sees at Auckland City Hospital’s infectious diseases clinic are pretty healthy – popping in for a six-monthly blood test and check-up – he agrees the stigma around the disease is the one thing that hasn’t changed.

In an Aids Foundation survey from 2014, roughly half said they wouldn’t feel comfortable flatting with or eating food prepared by someone with HIV, and didn’t like the idea of their child having an HIV-positive playmate. But unlike Hepatitis C, for example, the virus can’t be transmitted in the playground, or on a rugby field.

“In any setting outside a sexual encounter or sharing needles for intravenous drug use, you can’t catch it,” says Ritchie. “Compare that to the other infections we’re dealing with at the hospital, such as staphylococcal disease, which is the number-one threat to healthy New Zealanders. You can catch that by touching a pedestrian-crossing button.”

A life with HIV may end a year or two prematurely, accelerating the ageing process and slightly increasing the risk of heart disease and some forms of cancer. While few expect a cure any time soon, promising progress is being made towards developing a vaccine, although the ability of the HIV virus to mutate has led to the development of drug resistance in some populations. Dubbed “the ultimate evolver”, it’s able to reproduce at a lightning rate – a single virus can spawn billions of copies in just one day.

It’s a long way from the days Auckland GP Mike Pohl remembers when he worked with some of the very first men ravaged by Aids in the mid-1980s – testing, counselling and guiding them through the panic at a time when HIV patients were kept in isolation wards and medical staff in “zoot suits” had to be persuaded to operate on them.

After 35 years in the same practice, he says it’s been an ongoing privilege to be involved in the lives of such vulnerable people. “I used to think of my dad in the trenches, the hell they went through. For us, this was our World War II.”          

A look back over 30 years of New Zealand Aids Foundation posters shows an evolving public-health approach, which quickly moved away from scare tactics to promoting a more positive message.

 

 

This was published in the May 2017 issue of North & South.


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