It’s been 40 years since the first media reports of HIV/AIDS. Te Papa’s Gareth Watkins reflects on the timeline of the pandemic in Aotearoa New Zealand’s history, which sees a number of significant anniversaries in the coming weeks.

It was in June 1981 that the first reports emerged in the United States of five young, previously healthy, gay men who had developed pneumocystis pneumonia – later linked to what we now know as acquired immunodeficiency syndrome (AIDS).

But AIDS and the HIV virus had actually been quietly active in communities (not just gay communities) for decades earlier. Left untreated, the virus weakens a person’s immune system and opens up the body to opportunistic and potentially deadly infections.

AIDS in Aotearoa New Zealand

The first death in New Zealand from AIDS-related complications was in 1984. Denny was 29 years old when he returned from Sydney to New Plymouth to be cared for by his family. After his death, an interview with his sister Pat was broadcast on television: “We had him buried before the papers were told about it … his full name wasn’t even put in the paper.”

By the end of 1984 the United States had experienced over 5,000 AIDS-related deaths. In contrast, New Zealand had only experienced a handful. Our low death rate continued, in part due to our geographical isolation but also because of community-led initiatives to educate people about AIDS. One of those educators was Bruce Burnett.

Originally from Auckland, Bruce had been living in Europe before moving to California in 1982. He became a volunteer for the Shanti Project, a community based organisation that provided emotional and practical support to people living with life-threatening illnesses. Feeling unwell himself, he returned to New Zealand in late 1983 where he launched himself into AIDS prevention and support work. Bruce undertook a one-man tour of the country attempting to educate at-risk communities about AIDS. He was also instrumental in establishing (with others) the national AIDS Support Network – a group that would later become the New Zealand AIDS Foundation. Bruce died on 1 June, 1985, aged 30.

In the same year, blood tests became available to screen for HIV for the first time in New Zealand.

Homosexual law reform

Throughout this period, the fiery debate around homosexual law reform was also occurring. Both pro- and anti-reformers used AIDS as a key argument. Pro-reformers maintained that decriminalisation of homosexual activity would allow for better health care and education, while anti-reformers claimed that it would simply legalise the spread of AIDS. According to anti-reformer and Member of Parliament Norman Jones, it would be better for people with AIDS to die “sooner rather than later” to help prevent reform.

But the majority of MPs didn’t share his views and homosexual law reform was achieved in mid-1986. A year later, New Zealand became the first country in the world to provide a national state-sponsored needle exchange programme. It was aimed at reducing the amount of needle sharing amongst people who injected drugs. Again, the initiative was a peer-led community response to HIV.

However treatments for HIV and AIDS were still limited in the late 1980s. Author Tom Mclean noted in his book If I Should Die that the life expectancy of a person with AIDS after their first bout of pneumonia was nine months. Tom died three days after his book was launched in Wellington. He was 40 years old.

New Zealand AIDS Memorial Quilt

Tom is one of many people remembered on the New Zealand AIDS Memorial Quilt. The quilt is based on the international NAMES Project AIDS Memorial Quilt founded in San Francisco. The New Zealand quilt had its first unfolding ceremony in Auckland on 5 October, 1991.

One of the quilt’s early organisers was Darren Horn. He wrote: “All the quilts speak of love, compassion and memories. Each is composed of recollection, sadness, acceptance and letting go. The quilts help us to learn and accept.” Darren died in 1993, aged 32.

Almost ten years ago Te Papa became kaitiaki for the majority of the quilt – sixteen 4×4-metre blocks. Attending the pōwhiri and gifting ceremony on Rongomaraeroa at Te Papa was another early quilt organiser Nicki Eddy and her daughter Megan. They knelt next to the quilt they had made for Nicki’s brother Robin in 1991.

Nicki reflected on how Robin’s nieces and nephews left painted handprints underneath his birth and death dates: “Under the 2nd May is my daughter Megan’s handprint because she was born on [Robin’s] eighteenth birthday, and my son Bryce is under the 20th May because [Robin] passed away on the 20th May [1991] which was Bryce’s seventeenth birthday.”

Upcoming anniversaries

So 2021 is an important year on many levels. It marks the 30th anniversary of Robin’s death, it is also the 30th anniversary of the first unfolding of the New Zealand AIDS Memorial Quilt, and it is the 40th anniversary of the first international reports on what we now know as HIV/AIDS.

The anniversaries make me reflect on the amazing advances in treatment. HIV is no longer a death sentence and now people who are diagnosed and tested early can have a normal life expectancy. Sadly, the stigma and discrimination seen in the early years of the pandemic still exists today – and can sometimes be the main enemy for those currently living with HIV.

I also reflect on and remember the people who are no longer here, a feeling captured beautifully in Chanel Hati’s poem, read at the 2017 AIDS Candlelight Memorial Service in Wellington:

Today you have called my name and in spirit here I am
I am one of many in a sea of stars
Rekindle my spirit with your words of remembrance
that I may be, but for a moment, present in the minds of those that I once knew
Then set me free, let me fly to the great beyond
until I am once again called to mind
Let me return refreshed and ever more youthful than the last time you called my name
For the bonds of friendship may we never forget
In the name of love let us always remember.