Mark Fisher

Making a positive difference

In the late 1980s, the HIV/Aids crisis was climbing to a crescendo. More than 71,000 cases had been reported to the World Health Organisation in 1987, pianist Liberace died of Aids-related illness, and Princess Diana made headlines for shaking the hand of an HIV-positive patient in a London hospital.

Around the same time, in rural Melbourne, an 18-year-old Mark Fisher came out as gay.

Fisher, now 51, has dedicated most of his life to working for the HIV community – including in his current role as executive director at Body Positive, the country’s only national HIV-positive peer support organisation.

Awareness and attitudes about HIV (human immunodeficiency virus) have come a long way in the three decades Fisher has worked in the sector, but he says there is further to go.

Fisher grew up on a farm in the country town of Rockbank, about 30 kilometres from metropolitan Melbourne, one of only a handful of students at the small local school.

He later attended Melbourne High School before undertaking a computer science degree at RMIT (formerly the Royal Melbourne Institute of Technology).

Though it originated decades earlier, HIV/ Aids was sweeping the world in the 1980s and early 1990s. Misinformation and homophobia were rife. Aids was labelled the ‘‘gay plague’’, and initially named ‘‘Gay Related Immune Deficiency’’. The spectre loomed large.

In 1987-88, when Fisher came out while at university, the ‘‘Grim Reaper’’ ad campaign screened on Australian televisions, showing the personification of death bowling – knocking over men, women and children.

Messaging ‘‘created a culture of fear of having sex, and the danger of it’’, Fisher recalls.

Meanwhile, he completed his degree and started work at an IT firm covering insurance, bonds and superannuation. In the early 90s, the firm beganwork with Australia’s national HIV reference laboratory. Seeing an opportunity to ‘‘truly make a difference’’, Fisher jumped ship, helping to develop a database of the National Serological Reference Laboratory.

A few years later hewas approached by people from Ontario about working on a similar database there. In 1995, he moved to Canada on a year-long student visa. He remained there for two decades.

Fisher helped develop a similar database for Ontario’s Provincial Public Health Laboratory, work which was ‘‘really impactful’’.

It was in Ontario that Fisher met his partner Dan, an English teacher, in 1998. The couple married in 2002.

Fisher recalls an early conversation starting: ‘‘I have to tell you something . . .’’. Fisher thought itwas the 21-year age gap that was worrying Dan, who instead disclosed he had been living with HIV for more than 20 years.

Dan was fully engagedwith healthcare services and volunteered at the localYMCA to stay fit and healthy, but his HIV wasn’t getting to undetectable levels.

An undetectable viral load iswhere treatment has reduced your HIV to such small quantities it can no longer be detected, and cannot be passed on sexually.

Hoping for better results, Dan changed medications, setting off a chain reaction. After having a reaction, he had to switch medications ‘‘again and again’’ and never got back to a good place, Fisher says.

Dan developed peripheral neuropathy (nerve damage) and deep vein thrombosis (a blood clot). Eventually, the virus crossed the blood-brain barrier, infecting Dan’s brain, causing him to lose short-term memory.

He died from complications due to Aids in 2005.

Fisher stayed in Canada, moving the same year to the Ontario HIV Treatment Network: a non-profit body designed to improve the health and lives of people with and at risk of HIV, centred on community-based research.

In early 2014, Fisher flew to Melbourne for his niece’s wedding, celebrating Mardi Gras in Sydney on the same trip, where he met a New Zealand-based man.

After visiting to test the waters, Fisher packed up and moved to Auckland in August 2014, taking a job at Body Positive onWorld Aids Day – December 1.

Body Positive was founded by and run for Kiwis living with HIV/Aids, providing a broad range of services in an attempt to break down the sense of isolation HIV+ people often experience, including educational forums, an annual retreat for HIV+ men and monthly social events throughout the country. Its board is entirely staffed by people living with HIV.

Life in New Zealand is different to Canada – particularly in the HIV space, says Fisher, who is not living with HIV. Despite 3500 Kiwis currently living with the virus, it is largely not visible. ‘‘You don’t see it mentioned very much anywhere.’’

The same is true for Body Positive, which is partly by design. Disclosure remains a precarious and thorny conversation: could it cost someone their relationship, their job, their home?

‘‘We protect identities, [it’s] why a lot of people don’t see our organisation or know about us.’’

New Zealand has ‘‘very good’’ medical support, but there are limited places people can go. If a person tested positive, they would need to connect with an infectious diseases service to access care – there are only nine sites in New Zealand. Ontario has roughly 75 HIV agencies; New Zealand has three.

Of 1500 New Zealanders on Body Positive’s books about 500 are ‘‘active’’ members, and 60 or so are considered ‘‘high’’ needs, including thosewho disengaged from care, experiencing homelessness or addiction. ‘‘Our focus is to keep people in healthcare . . . to try to fill gaps.’’

Lockdown and Covid-19 resulted in ‘‘retriggered trauma’’ from the 80s for some with HIV – an already vulnerable group.

HIV and Aids are immune-deficiency illnesses, increasing the risk of developing infections. Some HIV-positive Kiwis started seeing doctors, hospitals and pharmacies as vectors of disease, and stopped seeking treatment or taking their medication, Fisher says.

‘‘We were doing courier runs [to get people medicine], it was a bit of a nightmare.’’

Stigma also remains a pervasive and debilitating issue – something Fisherwants to change. A survey of 1000 people, commissioned by the New Zealand AIDS Foundation (NZAF) and Positive Women in 2018, polled attitudes around and perceptions of HIV in New Zealand.

It found 46 per cent of Kiwis were uncomfortable letting a child play with another child with HIV, and 38 per cent would be uncomfortable having anHIV-positive flatmate. ‘‘It is still a major issue… people’s mindsets are still back in the 80s.’’

A lot of Fisher’swork is around messaging that HIV doesn’t discriminate. That a person’s partner could be living withHIV, and there is no risk to them because, with effective treatment, they can’t pass it on.

He says it is about shifting 30 years of dialogue – making people realise ‘‘you don’t need to wash the linens separately’’.

This ethos has seen Body Positive and New Zealand’s other HIV/Aids agencies, NZAF and Positive Women, team up on the world’s first HIV-positive sperm bank, Sperm Positive. ‘‘It’s one of the ways we are really leading [the world].’’ Fisher says.

And while the conversation about HIV has come a long way in some respects, it is stuck in a bygone era in others, Fisher says. ‘‘We always talk about how HIV is manageable now, treatments [available] are really good – that’s for someone diagnosed today.’’

Someone infected decades ago has faced a different journey, with many developing multiple complications over time due to toxic medicines, leaving Body Positive helping people riddled with health conditions into retirement homes in their fifties.

‘‘We’ve lost an entire generation to HIV. It’s important to appreciate and remember that . . . especially because we still don’t have a cure.’’

The realities of livingwith HIV are far more complex than getting to undetectable levels, Fisher says. They continue to face the threat of losing their job or their home, and to face restrictions entering certain countries, and even getting insurance.

Things are great ‘‘superficially’’ – medicine has come a long way, allowing people with HIV to live full lives – but stigma and discrimination remain ‘‘huge’’ issues, with no incentive to change.

Although more than 50 per cent of people livingwith HIV globally are women, much of the discrimination is rooted in the fact that HIV is seen as a ‘‘gay, drug-user virus’’, Fisher says. ‘‘There is a lot of work still to do.’’

‘‘We’ve lost an entire generation to HIV. It’s important to appreciate and remember that . . .’’