“You'd see young men come in, looking like they were in the prime of their lives,” Kevin Langley says of his 8 years working as a nurse in an AIDS ward in San Francisco General Hospital. “Like they could be GQ models needing a little bit of oxygen. And by that evening, they'd be intubated in the ICU on a ventilator.”

The ward, originally 5B, was started by nurses who saw a deficit in the care being provided to people with AIDS. It quickly outgrew its capacity and moved to a larger ward, 5A, then eventually evolved into an oncology and general medicine ward in 2006, after successful antiretroviral treatments had become more widely available.

“There was very little we could do with supportive therapy,” Kevin says. “There was nothing to treat the underlying cause. So, it was pretty hard. We really bonded with a lot of our patients. For some people, we were the only people that were showing them any compassion.

“A lot of people were very distant from families or were completely estranged from their families, and even some of their friends weren't able to handle it. All kinds of levels of sadness, and disease going on. A lot of death, a lot of death. Tough times. Every day someone would die.”

But despite the emotionally challenging work he was involved in, Kevin felt he wasn’t doing enough.

“I felt like I had to do something about the bigger picture of the fact that the AIDS epidemic was also political, that it was not being addressed appropriately. Things improved slowly at a federal level, but it was terrible.”

The AIDS epidemic became all-consuming for Kevin, who at one point was the President of the local chapter of the Association of Nurses in AIDS Care, was attending international AIDS conferences, supporting friends living with the virus, and became involved in the AIDS activism organization ACT UP. In 1988, he was part of ACT UP’s blockade of the FDA, where they were pushing the FDA to release drugs.

“We closed down the FDA that day. My mother nearly got arrested.”

Kevin's mother Rae Trewartha, a lesbian who came out later in life, went on to co-found ACT UP London.

In 1981, before moving to San Francisco in 1983, Kevin was living with Bruce Burnett (the activist our organisation is named after) in Auckland’s Herne Bay. In a pre-AIDS world, there were many other political issues the pair were involved in raising awareness for – for example, he and Bruce joined the Eden Park protest of the Springbok tour in 1981. The pair made a huge “Gays For Freedom” sign, which was made with the intention of making the police uncomfortable.  It worked.

'It was so funny. The cops hadn't ever had to deal with any of this before. Honestly, they had no idea what they were doing. They were just waving these batons around," Kevin says.

“I was pretty nervous. But Bruce was kind of fearless."

Bruce moved to San Francisco, and years later, as Kevin was due to do the same, Bruce was diagnosed with AIDS (later renamed as HIV as scientific understanding advanced) and decided to move back to New Zealand.

“He was just so fucking generous,” Kevin says. “He hooked me up with all of his friends and his roommates. So I got to take over his flat, and he gave me all his furniture. He kind of just set me up here – and that was typical Bruce.” 

“When Bruce came to San Francisco, I think he came for the same reason that a lot of people came, which was like, ‘gay Disneyland’. It's all here. It's 24/7 on tap gay. He got here and had a blast and then discovered that people were getting sick and were dying. And he immediately got involved.”

Bruce became a Shanti Project volunteer – one of the largest AIDS support organisations in the US at the time, providing emotional and physical support for people living with the virus.

“He just had this real fire in his gut to help and to be involved. And he was a very organised guy. He'd run businesses, he had a great deal of determination. And so he came here, he got involved, he then got sick himself, and he got his own Shanti support person.

“When he got back to New Zealand, I was just really impressed that he - he didn't have to do what he did, you know? He could have just kind of quietly battled his own problems, which a lot of people do, which is fine. That's how most of us usually deal with stuff. We battle disease or difficulty on a personal level, maybe with our family and friends, but it's not like you’re gonna create an organisation around it.

"What Bruce did in just being an advocate was to create a conversation that pushed New Zealand into pretty quickly creating a compassionate response to AIDS and acknowledging it. Now I'm not saying it was perfect, but it was better than here [the US].

“He was just driven to help other people understand what was happening. To stop it from becoming the disaster that was happening here. To stop it from happening in New Zealand, and he just jumped on it. It was incredible. And maybe, or maybe not, it sped his demise cause he was just working so hard to make the AIDS Foundation a thing.”

After Bruce’s death in 1986, Kevin made a panel dedicated to him for the AIDS Memorial Quilt project. The panel features a large unfurling koru, cut from a green sheet and hand-stitched - inspired by the Hundertwasser koru flag, an alternative New Zealand flag proposed by Friedensreich Hundertwasser in 1983. The quilt also features a "generic pink triangle" (like the one ACT UP uses), a Yin/Yang symbol as a nod to the Buddhist teachings Bruce followed, and the Nuclear-Free Aotearoa peace sign.

In 1987, the panel was part of the first unveiling of the Quilt on the National Mall in Washington, D.C, where Bruce was one of 1920 people represented by a panel. Today, the AIDS Memorial Quilt includes nearly 50,000 panels dedicated to more than 110,000 people. It weighs 54 tons.

The Quilt has become an integral part of the fight against a virus that is still transmitted to around 1.5 million people a year. At the 35^th anniversary of the Quilt in Golden Gate Park in June 2022, San Francisco mayor London Breed acknowledged that while the Quilt was “born out of tragedy, each panel gives us a beautiful opportunity to pause, and to appreciate the individual lives of this diverse community. It’s vital that we preserve and protect these vessels of memory, so the world never forgets, and never repeats the same mistakes of the past.”

But in its first years, the value of the Quilt wasn’t as immediately obvious to everyone.

“Back in the day,” says Kevin, “a lot of the more radical ACT UP types were sort of like “This is just to appeal to middle America with the concept of quilting. And it's kind of lame, and it's not gonna do anything, and we need to fight. We need to get in the streets. We need to chant and holler and scream and hold people accountable.””

“And, as it turned out, I think both of those things had to happen. Because the Quilt has just touched people in a way that nothing else has. Because when you walk in there and you see those names and it's just this love that shines out of this thing. It's like this shimmering heat wave that just comes off it. You just feel the vibe. And that really, really, really moved a lot of people.

“But at the same time, what ACT UP was doing was also really important, because without the strident energy in the streets, all the blockades, you couldn't break through, you couldn’t get the media to pay attention. [President Ronald] Reagan was avoiding the whole thing. It was just a joke. Republicans were in power, AIDS was a whispered joke because it was queers that were getting it. It was a horrible time and it took both of those sorts of energies to work.”

The joining forces of activism, political pressure and scientific developments led to many patients in ward 5A being offered places in drug trials. In 1996, the most significant results from some of the HAART (Highly Active Antiretroviral Therapy) trials were released at the International AIDS Conference in Vancouver.

“By that time, we already knew those drugs were working,” says Kevin, “because our patients were in those trials and they weren’t getting sick anymore, and inpatient AIDS care numbers were dropping. All the stuff we had before was just band-aid stuff. It was toxic. It treated opportunistic infections but it didn’t treat the cause. We finally had something that worked."

Today, Kevin is recently retired and excited about the New Zealand AIDS Foundation’s rebrand to honour his friend Bruce.

“Initially I was like, “Why are they the changing the name?”” he says. “And then when I read it, I realised, oh yeah, it’s because actually, HIV often – at least in well-resourced, richer countries – no longer needs to progress to AIDS.”

“It's actually an uncommon outcome now, compared to back then when everybody got it. So I think focusing on prevention and support and keeping people healthy while living with HIV is actually a really great strategy.”

As part of the process of renaming our organisation, we are excited to connect to our past and speak to people who knew Bruce Burnett or others who were involved in preventing HIV and AIDS at the peak of the epidemic. If you have a story to tell, please get in touch via [email protected].