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20 years of pragmatism and compassion

Wed 31 Mar 2004 In: HIV

Rod Ellis-Pegler One man has experienced the casualties of the HIV/AIDS epidemic more than anyone in New Zealand. In an article first publshed early last year talks with the senior HIV specialist who was there when the epidemic first appeared and who is still wrestling with the personal and medical aspects of HIV and associated illnesses more than 20 years later. Several times a year senior Auckland Infectious Diseases specialist Rod Ellis-Pegler takes a group of medical students passing through his department and feeds them just half of one of the most common HIV pills. Most of them gag and spit it out. It's a short, sharp lesson in the practicalities of treating people with HIV. It's also indicative of a man who mixes a conservative, pragmatic approach to medicine with a genuine concern for his patients. Ellis-Pegler has been there right from the early days, over 20 years ago, when the disease was undefined and untreatable, to the present day when a variety of drugs are making only limited headway in controlling the virus. In 1982 when the world epidemic was starting to appear in the USA he was in just the right place, a big American hospital with a large infectious diseases unit. "The information had already broken when I went to the USA but it was becoming a much bigger issue. They had a big infectious diseases department at the Denver University Health Sciences Unit, a hospital associated with their medical school, where I was working." The department met every week and Ellis-Pegler, or EP as he is nicknamed by those in his care, remembers a group from the US Centres for Disease Control arriving to talk about this new illness. Young gay men were dying of strange, rare, illnesses. "I remember that it was incredibly skewed towards American gay males at the time. Talk about a cause seemed to be predominantly focussed on the immune abnormality," which was later to be understood as a symptom of the disease, not the fundamental problem itself. "They were focussed on cocaine and intravenous drug use, on rectal intercourse, antibodies to semen, all this sort of stuff as people were, even then in '82, looking at it as an issue of a primary immune dysfunction." It was while EP was in Denver that researchers described the first cases related to haemophiliacs or blood transfusion. "At that instant there was the sound of pennies dropping all over the world." It was some sort of infection. Forging links with the gay community "I came back here in 1983 and it was shortly after that time that Bruce Burnett used to come and sit in my office and talk about it," remembers EP. Burnett was a gay man with the disease who had lived for years overseas. He saw the HIV tragedy unfolding overseas and began a crusade to wake up NZ health authorities and the gay community to the issue. "He was the person who was making most noise about it in New Zealand," says EP. "He was extraordinarily prescient and I remember him saying 'this is going to be a really huge thing Rod.' And he certainly was right." The first AIDS patient at Auckland Public Hospital was in '83, an American off one of the big cruise ships. "He was vomiting blood and had Kaposi's Sarcoma... terrible." Burnett himself soon died "very quickly after a very nasty illness" related to HIV. Up till that point Ellis-Pegler had had no special links with gays "but now I became much more involved with the gay community and infected gay men. While overseas gay groups became militant, marched in the streets and deflected political and moral posturing in their countries". EP recalls a much quieter approach to research and treatment here. "I can remember going to meetings and talking with them about the things that I knew about it. We all used to shake our heads a bit and look at the ranting and raving going on around the world" but "we tried to be as sensible as we could about it and when it was discovered to be a virus we tried to point out to people that viruses were not selective or particular racial or sexual groups... that things happened because of risk activities... and it was bad luck." EP says he tries to not look back through rose tinted glasses "but early on gays and the medics seemed to manage to avoid a lot of the sort of angst that seemed to be a feature of this issue in places like Australia and certainly in the USA." As the '80s progressed the Auckland patient load grew steadily. Gay men in New Zealand's biggest city were dying in increasing numbers with EP as the only adult infectious diseases specialist. The learning curve was steep, "but people like me thrive on that. That's my intellectual challenge... most physicians are like that. Even in that intellectual sense this has been an extraordinary experience. The challenge is in the variety of things that can go wrong with people infected with HIV. My challenge is predicting things and the pleasure for me is solving problems. There is some gut thing in me that likes to do that but it's still very much an intellectual thing, trying to think ahead, always thinking ahead." That's particularly important with HIV drugs, and for EP, and it means "endless thinking ahead because what you are doing now is going to have some effect down the line. There is only so much you can do about that of course. The drugs are needed now in the short term and may create a problem in the long term... but at least we're going to get to a long-term." Pragmatism and conservatism EP describes himself as a pragmatic person. "I tend to be a pragmatic solver of problems as they come up in front of me. I never had any truck with political considerations and things like that to be perfectly honest. I'm very much an individual patient sort of doctor. I think I do that reasonably well. I'm not a great one for standing back and looking at the political, social, philosophical aspects of HIV infection. And that's a function of my training as well as the sort of person I am. I try to adapt the way I handle each individual. With a new patient, first up when you're dealing with the heavy stuff that's hard. As the years go by you develop a better relationship. And it often becomes a bit easier and we can even joke." The most enduring, though not universal, criticism of HIV treatment at Auckland Public Hospital is that it errs too much on the side of the conservative, with a reluctance to try new things, to get radical. "That's me," acknowledges EP. "Because of where I've been and I think that has affected the people around me. In 1988 I was joined by another ID specialist, Mark Thomas, and in about 1998 Andrew Woodhouse. In terms of APH there have only really been three of us principal players, all probably tainted by me in the sense that they've all been my registrars, taken their cues from me. They're all individuals with different views but they are those sort of doctors anyway and most physicians are conservatively inclined." Has he ever lost a patient by erring on the cautious side? "Not a single person... but you might expect me to say that. I have tried to look where people have lost out but I really can't see it. There's a sort of magical belief in drugs that people like us who have been in this business forever sadly don't actually share. And that's born from experience and using the damned things and observing the side-effects. People like [high profile American HIV researcher] David Ho... well I think he should be ashamed of himself! "EP is, unusually, expressing passionate anger. "So way out were his views as a result of some small experiments in a very small number of people that he drove an entire philosophy that you should treat HIV the moment that you found it." EP leans forward across his desk, a passion from within finding an outlet: "Anyone who had ever treated anyone for diabetes or hypertension or any damned thing where you had to take pills for more than a fortnight knew his approach was fantasy! It's really hard to take pills in my view and I've seen an awful lot of people try to do it. It's hard enough to take them when you're crook! When I heard that "Hit Hard Hit Early" stuff I just shook my head in amazement." New Zealand's physical isolation meant that other countries had a two year head start on us in the infection and epidemic stakes. That has enabled organisations such as the AIDS Foundation to learn from others' experience in devising education programmes. Was there also benefit for understanding HIV treatments? "That was a great help... absolutely and yet we were certainly as quick as anyone else to pick up on treatments. We were the third country in the world to pick up on the first HIV drug AZT... and a lot of people don't know that. I really made a noise when I saw the AZT trial come out... here was something that altered the natural history of this disease... it might not be fantastic but as we couldn't cure a single virus - and we still can't - we got stuck into that and the Health Department responded and only Australia and the Americans beat us." EP is impressed with the way the New Zealand gay community engaged with the Government and the Ministry of Health. "They achieved things... not with screaming and ranting and raving but by knocking on doors and talking to people," he says and it's clear he respects those who carefully plan and execute reasoned strategy. "Warren Lindberg of the AIDS Foundation had very good skills in this area. He and I used to talk all the time so he also knew my medical slant on the thing... and he was no slug... he was a sharp guy who could pick up on things and spoke the medical language as well. In these days of increasing health advocacy by specialists, EP has always remained quiet. "I do not believe that HIV infection merits any particular special bit of the pie than someone dying of cancer or anyone else. And that philosophy has to some extent kept me out of becoming a voice for HIV infection or doing special pleading... I will not do that. Others can do that but it will never be my way. None of us here in Infectious Diseases is like that. Does this mean he will jot push for funding for treatments he believes useful? "There have been some times when I have got on the phone to [drug funding body] Pharmac and tell them what I think of them. I don't have any problem with that." The human toll is, and continues, to be a tragedy Yet, despite the advances in treatments the endgame with HIV is still always eventual death. "Always." Before HIV, the only long-term patients EP and the Auckland ID team had to deal with were those with leprosy. So HIV was a totally new experience for me and all of us involved with it. And it was unequivocally about death and dying. We were having, on average, two patients dying up here in ward 9c a week in the mid to late '80s. I had never experienced anything like that before in my life." As an outwardly reserved, conservative man, how did he relate to his sick and dying patients? "Its about helping them to cope with the difficulties of a very uncomfortable disease process that we basically couldn't affect at all in the beginning. The most useful thing, and it came before AZT, was preventing PCP. That's an awful disease... to be breathless and frightened and dying... it was just awful! In Australia they started trying Dapsone which I was familiar with as it is the chief treatment for leprosy... and when I heard they seemed to be having some success we started giving them all Dapsone and that reduced the frequency of that terrible illness." One HIV-related illness was now able to be managed, but others always took its place. "We were caring for young, dying people. I've sat in here and cried because it was just overwhelming." EP still avoids funerals. "I've only been to three funerals of HIV infected people in my career because I really can't cope... it just became too much." Around 1200 HIV infected people, mostly gay men, have passed through Auckland Hospital. There is a growing perception in the gay community that HIV is a manageable disease... take pills, life goes on. How does the man who prescribes the pills, who tries to treat the infected, view that? "It's crap, absolute crap. A catastrophe in the making. The whole business of viral resistance in relation to HIV is something that people just will not get a handle on. That when you're infected. you're infected with whatever virus you pick up and if that virus has been through people and is resistant then you've got drug resistant virus. It's a very simple notion... there's nothing new about it. I know we can't always ignore the needs of the here and now just because of some problem with resistance in ten years time... sometimes you just have to do something now." EP is on a roll, an emotion somewhere between anger and despair colours his voice. "This is not a simple disease. It's a nasty infection which will almost certainly kill you. And we will try to stave off that moment for a long time and we can do it a bit more easily than a few years ago and the pills are a bit simpler to take but... " EP's voice trails off and he gazes out his office window. An otherwise articulate, chatty man with a wealth of experience is quietly lost for words. After 20 years of treating hundreds of people with HIV, Rod Ellis-Pegler is still moved, passionate and ultimately worried about the disease in our midst. - 31st March 2004    


First published: Wednesday, 31st March 2004 - 12:00pm

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