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Saturday 11 April 2015


Decades of making a difference - Pt2

Posted in: Our Communities, HIV
By Jay Bennie - 1st December 2014

Bruce_Kilmister_6.jpg
Bruce Kilmister
“I was diagnosed with HIV in Australia in the days when it was a death sentence because there was no medication that could treat it,” says Bruce Kilmister, who has retired from over two decades of running Body Positive, the now national HIV people's peer support and advocacy organisation.

Early in the then-fatal epidemic the test for HIV could not be done in New Zealand, Australia had the only testing laboratory in this part of the world. Initially there were no drugs either. HIV was a death sentence, short or lingering but always shockingly unpleasant, with gaunt robust gay men in their prime reduced to grey bony cadaverous skeletons losing their dignity and frequently their minds. Gay man after gay man succumbed to diseases usually seen only in the extremely aged. Medics could treat these opportunistic infections, such as pneumonias and cancers, for a while but inevitably nearly nearly every weakened body and soul lost the battle.

Then reports from the northern hemisphere filtered through that one drug seemed to make a difference. It was a huge, chalky, toxic pill with a myriad of unpleasant side effects but it did seem to slow the virus. Unfortunately it also nearly killed the patient, especially at the high doses initially thought necessary to push back HIV a bit.

“We'd heard of this new thing, called AZT, in America,” says Kilmister, who was based in Auckland but travelled frequently for his import business. “I decided because I was working in both Australia and New Zealand for my business that I should be where the I was most likely to have access to this new medication and where, for example, there was more chance of the medical authorities being able to assist due to there being a bigger HIV-positive population. So I was under the care of Dr David Cooper at St Vincent's hospital in Sydney for some years before I then transferred my care here to Auckland. That's when I met for the first time Dr Rod Ellis-Pegler who was the head of infectious diseases at Auckland Public Hospital.

Especially in the early days of HIV the doctor-patient relationship was critical, at best an amalgam of a patient living on the edges of survivability and a specialist negotiating the boundaries of medical knowledge. Ellis-pegler, now semi retired, was then one of the most HIV-knowledgable medical specialists in Australasia, a man with a compassionate heart and an infamously blunt bedside manner. “After I explained to him what I wanted he just simply looked at me and said 'I'm not going to look after you, I refuse to be your tame prescription writer. You can have another doctor.'

“So I was passed on to Dr Mark Thomas.” Thomas, immensely learned with a charming and easy manner is patience personified and not the sort to be fazed by stroppy patients.

“While my relationship with Rod had a rocky start it's been a wonderful friendship where he's come to my home and we discuss art. But it was rocky in the beginning...”

Kilmister, increasingly known for his wide knowledge and assertiveness when it came to his own treatment or advocating on behalf of others with HIV, laughs, a kind of self-deprecatory chuckle. “He thought I was a bit of a radical and at various times he wrote letters of complaint to the Ministry of Health about me, he complained to [government drug-approval agency] Medsafe about me and all the things were doing. Because, simply, if there's one thing that HIV has caused out community to think about it's to take ownership of it and not wait.

Government agencies were sometimes incredibly slow to approve and then fund cutting-edge and expensive medications. Under constant pressure from big lobby groups of HIV-positive people across the Tasman, Australia always seemed to be further ahead of New Zealand in making available desperately-needed HIV medications as they slowly filtered out of the pharmaceutical companies. Underground methods of getting the life-saving pills were resorted to. “We saw this represented in the movie Dallas Buyer's Club, says Kilmister, “and we saw here it in New Zealand where we are not prepared to wait for bureaucrats to find solutions for our lives... we want to lead or participate in leading.”

By now it was the mid 1990s, ten years of sickness, desperation and death into the HIV epidemic and the effects of his HIV infection had caused Kilmister to loose the reserves of energy to fight a changing business climate. His business had subsequently folded and he was living a much-constrained life. Hero, Body Positive and, eventually, local body politics became his passion. And if he had to go up against the law to save his and others' lives then so be it.

“I can remember smuggling drugs into New Zealand customs from Australia, to supply people living with HIV through Body Positive.” Kilmister, in no way your usual drug smuggler, laughs at the memory. "I remember the first time I was ever stopped. It must have been by a brand spanking new customs officer, it was the last flight of the night and she asked me to open my bag. I saw her eyes open wide, she must have thought she'd discovered the biggest drug smuggler in the world! I had probably a hundred-plus bottles of HIV medications. They seized the whole lot except mine, I insisted that they leave me with my personal medications which they did. I was just praying that they would initiate a prosecution because I thought we needed a public display about all of this because New Zealand was lagging behind in providing medications.

Maybe it was coincidence, maybe not but within about four weeks of that seizure Kilmister recalls the government announced an increase of five million dollars for anti-retroviral HIV medications.

Did Kilmister and Body Positive ever get all those expensive medications back? “No, they were now legally in the system and seized medications like that are always destroyed due to product safety and that sort of thing. But ultimately we'd embarrassed the authorities into doing something. I can't exactly say I was responsible for that but I like to think it was a little contribution because it certainly went to the Minister of Health's office because I knew the Minister, Annette King, and her cohorts from the old days in the Labour Party and the fights for gay equality.”

"I've always been politicalised and been with the NZ Labour Party for a long time, because, I suppose, I saw that they were the only champions for our rights on almost every front and certainly it was during Fran Wilde's days within the Lange Labour government that we saw our rights legalised.”

But it was not always so, especially when he was a younger and upwardly ambitious businessman. “I'm embarrassed to admit that I did once vote for Robert Muldoon in the very early days,” Kilmister laughs long and loud, “but only once and every election after that I haven't voted National. Having said that I do respect the hard work that I see some of the National people doing, particularly Nikky Kaye who has been very supportive to Body Positive. In Auckland she is our local MP and regardless of one's personal politics you do see your local MP for certain things and she's been good for us, certainly when we finally achieved a Ministry of Health contract and that was really because the Ministry Commissioned Dr David Miller to write a report on the state of HIV services in New Zealand and he recommended that the peer support organisations should be funded... and rightly so, because we were doing a lot of work that deferred or defrayed costs to the public health system further down the line.

“I am delighted to say that I leave Body Positive with a strong Ministry of Health contract and with a good strong relationship with most of our funders to the extent that we're fairly solid and secure but the whole reality is of course that the Ministry contract represents only about 18 percent of our income... the rest of our money really is on a knife edge because philanthropic funders can say 'no' as easily as they can say 'yes', and they can say 'yes' one minute to $50,000 and the next year they might say 'yes' to $5,000. So in this job you do an awful lot of work finding money to keep the place funded and running along."

Kilmister readily admits that HIV, in more ways than just medically, took over his life. “In fact when I was diagnosed with HIV I was on a very different career path and one that was very much towards the materialistic pursuits of a successful lifestyle and running my own business. And HIV just totally diverted me altogether from that because along the way it killed my partner of fifteen years and it killed my best friend and so many, many people we knew in the gay communities. And you can't ignore that, so I thought that it was time to see what we could do to help those who are impacted by it and make the situation so others don't follow those footsteps in exactly the same way.

Along the way, primarily for his work for the gay community in projects such as Hero and Body Positive, Kilmister was in 2001 awarded the NZ Order of Merit, the first and still only person to be so honoured by the government for work in and for the nation's gay communities.

“I think that was predominantly because of the Hero Project.” He chuckles at a particular memory... “We'd had such opposition from the Auckland City Council so I thought the best way to counter that was to invite somebody from the government along and Jenny Shipley was the first Prime Minister to be associated with it and in fact she formally opened the parade.”

Having the Prime Minister's seal of approval on an in your face gay event was political and social gold. You have to remember that Hero, at its height, was simply massive, with Parade crowd estimates ranging from 150,000 to 200,000 people in Ponsonby Road, start to finish blow-by-blow TV coverage, celebrities, and a huge festival of events, many of which have been revived for the more recently established Pride Festival. “And we certainly had the biggest parties the country has ever seen... down on Queens wharf we reached 6,500 people under one roof!”

“You know I really have to admire the Pride people today for what they do today but certainly it was a very different environment back then which made it all the more exciting, certainly for me and for those who came along for it.”


In the third and final part of this feature interview marking Bruce Kilmister's retirement from Body Positive after decades of working to better the lives of glbti and HIV-positive people, Kilmister reflects on the effects of HIV on his and others' lives.




Jay Bennie - 1st December 2014

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