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Hello and welcome to Gay BC. In today's program, we have part one of a two part interview with Daniel Fielding, um, Um, he's from the People with AIDS Collective. And also we have the usual announcements and what's happening tonight and all over the place for the next few weeks. The 1970s heralded the explosion of gay liberation. Acceptance by the public of everything gay was becoming a reality. Suddenly in [00:01:00] the early 80s, a frightening disease appeared in the gay community. Soon to be labelled AIDS, it caused hysteria and front page after front page headlines appeared in the newspapers around the world. Gay culture was devastated. What was so bravely fought for decades before seemed almost lost. Years later, we are slowly piecing together the jigsaw puzzle. We have lost far too many brothers along the [00:01:30] way, and once again we have to put up with front page scandals and governments spending money on everything else but what we want them to spend it on. I spoke to Daniel Fielding of the People with AIDS Collective about the current situation with AIDS and looked at what was happening locally and overseas and the changes that have happened over the past few years. What I'd like to start off with is going right back to when AIDS appeared [00:02:00] in the gay community. Um, it appeared as a disease, I think, called the, um, gay related immuno, immune deficiency um, syndrome. It was all very nebulous at the time. Could you possibly just tell us a bit about What your feelings at the time were, and what happened at the time when you were diagnosed? I remember back in 1982 or 83, when I was living in Australia, and [00:02:30] that was when we first began to hear about this thing called GRID. Um, And it was affecting the gay community in America very, very badly. But, somehow, nobody seemed to think that it would ever make it down to this end of the world, and, uh, everybody assumed that it was just something that was going to affect the Americans. Uh, when I came back to New Zealand in 1983, um, We began to hear a little more about it, and they changed the name, of course, from grid to [00:03:00] AIDS. Um, and in 1984, my lover and I went for our tests to see if we had the virus. Um, I must say we had no idea what we were letting ourselves in for at that stage. Right. What sort of, um, symptoms and that did you have in the, at that time? That, uh, was it just fear that made you go? Get tested. Yeah, we had none of that. We neither of us had any symptoms at that time except slightly swollen [00:03:30] glands, right? and I mean they they weren't bothering us at all, but we I had lived overseas for some time and my lover had traveled overseas on quite a number of occasions and Basically, we felt that we should know our antibody status and find out whether we'd been in contact with the virus What was your reaction when you Discovered that you were positive, there was still sort of a whole lot of things in the media as to what was going to [00:04:00] happen, and all the hysteria surrounding it, so what did you actually feel at the time? Initially the reaction was pretty horrendous, and that's, as I said, I didn't know what we were letting ourselves in for. Um, well, To us, we, we'd had no counselling whatsoever at that stage. Um, we were just tested. We, we asked the doctor for a test and he gave it to us. Um, he delivered the results to me over the phone. And, um, suddenly I realised that, that what had been delivered to me could well have been a death [00:04:30] sentence. Because that's how the media was presenting it at that time. If you had the antibodies, then you had AIDS. And if you had AIDS, you died. Did you know anybody else that had, uh, been diagnosed at the time besides your lover? Not at the time. Um, our, uh, blood actually went through with a batch of, um, people from Auckland who we knew. And, um, myself and my lover were the only ones to come back positive. [00:05:00] And so we were, that, that set us apart a little. Right. Were there many support groups around at the time? No, there was only one. Um, a doctor here in Wellington had a large number of gay patients. Um, and a number of them he had suggested that they be tested, and they had returned positive tests. When, we, we didn't get our tests done through him, but we let him know that we were there. That we had [00:05:30] received a positive result and he suggested that we join a group of guys that he had meeting together on a monthly basis. How did you find that group, the interaction with them? Oh, invaluable. Invaluable. We couldn't have survived as long as we did without some sort of support around us. Just the fact of being able to go along and talk to a group of guys who were going through very much the same things as we were. That was That really helped a lot. Often the meetings, they [00:06:00] certainly weren't heavy support meetings by any means. Um, it was really just a chance to get together for a chat and a cup of tea. But, they were good. For their time, they were good. At the time, of course, theories relating to what caused AIDS Um, was pretty sort of up in the air. We've sort of come now to look at a few areas which I think may be helpful in finding a, uh, a cure eventually. But, um, certain areas I thought we'd look at maybe was [00:06:30] things like being in the media such as syphilis being a cause. Do, do you wanna sort of say something about that, possibly your feelings? There is, there is a theory that, um, AIDS is syphilis in another form. Um, and I think it's, it's very interesting that recently they've had some success treating people with aids, with, um, the typhoid vaccine. Um, that in fact they've pulled some people back right from the. death. And the very interesting thing that relates to syphilis there is that prior to treatment with [00:07:00] typhoid vaccine, the people all proved negative for syphilis tests. But after, uh, treatment with that vaccine, they became positive to syphilis tests. And the theory about syphilis is that it is in an undetectable form, that it's been around in our society, um, under treated and sort of just under the surface for many, many years. And AIDS is the form that it's taking now. It was thought back then that That AIDS sort of took a few years possibly to develop, they're now looking at possibly 10 to 20 [00:07:30] years. Is that what's in the media at the moment? The quoted figures are 7 to 10 years. The San Francisco Department of Public Health has published that as their figures, and I don't know. Not sure that they know for sure, but, um, that's probably about the best guess that anyone can make at the moment. The whole, um, story of patient zero in the book, um, Gay and gay guys, yes. Um, what do you feel about that? Do you [00:08:00] think there was a patient zero? Or do you think AIDS is actually sort of stretched right back into the 70s before? I think the story of Patient Zero was a very cruel thing for that man to write. Um, uh, even if there was one person, uh, who started it all, and God knows if there was or not, um, I'm sure that, That it was not spread in the manner that it was made out to be, and, and the band played on. Um, AIDS has, they have [00:08:30] theoretically found cases of AIDS going back into the 70s. So the, the theory of one gay man spreading it through gay bathhouses in the early 80s, I'm afraid doesn't quite ring true for me. Daniel, there's also a mention of, um, poppers as well being a cause. That was a very, very long time ago, and I, as much as I believe poppers are certainly not good for you at all, I don't believe they are the cure, the cause of AIDS, um, there is still a question mark over whether there is a relationship [00:09:00] between them and Kaposi sarcoma, um, the cancer that affects some people with AIDS. Could we just go on to say, um, New Zealand at the moment, the statistics that we're dealing with, in terms of HIV positive people and cases of AIDS. Up until early April, there had been 124 cases of AIDS notified to the health department and 424 positive tests. They do believe, however, that this is only the tip of the [00:09:30] iceberg. Considerable numbers of people have not been tested within the gay community. And Looking at statistics from overseas, they believe that this may be, um, at least three if not six times understated. So we could be looking at anything up to about 3, 000 people, um, who are positive in New Zealand at the moment. This is sort of leading up to the question of testing. Initially, the whole feeling was that people [00:10:00] shouldn't be tested, if they didn't want to be, um, and people feel now that in fact it's a good idea to get tested. Um, can you elaborate a bit more on that? Uh, back in the 1980s, early 1980s, um, when people found out that we were positive, it almost made one into an oracle. And suddenly people were saying, well, should I get the test? And I'm afraid I was never able to answer that. And one of the [00:10:30] few things I could say to them is, why do you want to? And, um, if you really want to, what do you think you're going to do when you're told you're positive? Because there was nothing people could do. There was very, very little, there were no treatments available at that stage that were, um, known of really at all. Um, even AZT didn't come along until 86. So, um, now though, um, I would tend to, um, I think yes. My advice to gay men actually [00:11:00] would be that they should go and get tested for two reasons. Um, one, the major killer of people with AIDS is pneumocystis pneumonia and it's preventable. It is definitely preventable, but before you can prevent it, you have to know that you're at risk and therefore you have to know whether you're antibody positive or negative. The second reason is that there are beginning to be treatments available for people with AIDS, but. They are finding that the earlier they are used, the better. It's no use waiting until you get sick. [00:11:30] You've got to get into them at the stage I'm at now before things get too bad. And so, for those reasons, I would say to gay men that it's worth their while to know their antibody status. Currently, the therapies that are offered, there's numerous, um, amounts of sort of drugs and that we see all over the press, um, different things being investigated and released. Of course the most important one is A Z T. Do you want to just maybe tell us a bit about the types of treatments [00:12:00] that are around, the most important ones, and your feelings about those? Okay, obviously the most important drug is AZT. Uh, it was approved for use in New Zealand some time ago and was fast tracked by the health department because they felt it was the only thing that they could offer. Unfortunately, as time goes on, they find that that particular drug has quite toxic side effects. Um, and that people, a number of people who go on to it at the beginning, [00:12:30] are unable to cope with the side effects immediately. They just, they just cannot take the drug. Others who, um, are on it for some considerable time, have to go off it after a while because sooner or later the side effects become too badly. Um, it tends to, uh, suppress bone marrow production. Um, but I must say that, uh, AZT is the only antiviral that's shown any promise at all. And so, um, it seems also [00:13:00] that this relates back to testing. It seems that AZT may work better in cases where the person has not become ill, rather than waiting until someone's ill before they take it. Um, in, um, New Zealand at the moment, what are the feelings amongst this medical profession in terms of starting AZT off? Um, do, is there any sort of consensus about when and what, when to use it? Um, the, um, Guidelines for use of AZT were just recently, uh, [00:13:30] expanded, so that, uh, before somebody progresses to AIDS, they can be put onto AZT if they fulfill a particular criteria. If their immune system falls below a certain level, and they have an accompanying, um, medical problem, like thrush or, um, um, shingles or anything like that, then It's expected that they probably will go on to get AIDS and therefore the medical profession is quite willing to put them on AZT at that point and try and [00:14:00] stop that progression. And I think that's very important. The sooner you can treat people with HIV, the less people with AIDS you're going to have around. Going on to other treatments that are available, things like ozone, um, and alternative treatments such as meditation, color therapy, um, relaxation, massage, things like that. How do you feel about all those areas? I believe they're very, very important and they're something that I never, um, thought that I [00:14:30] would, um, subscribe to. I, I came from a very conservative background, um, and my medical care has always been undertaken in quite a conservative way. But I believe that things like visualizations, um, are helpful at relieving stress. And one of the main, um, Things that seems to contribute to, um, people progressing from HIV onto AIDS is stress. So I'm interested in anything that can help cut down stress like massage or acupuncture or [00:15:00] visualizations. As far as things like ozone therapy or, um, intravenous vitamin C goes, um, I don't really have an opinion on them. I'm aware of them, uh, but I have not read anything that has convinced me enough to try them myself. The availability of all these sort of things they mentioned all over the place once again, um, how easy is it for people to actually, um, get them [00:15:30] to use them? The, as the situation stands in New Zealand at the moment, it's easy to get them if you have the money to do so. But things like that are not covered under the New Zealand drug tariff, so if you want a course of massage or you want to undertake a course in rebirthing or visualizations, you must pay for it yourself. Um, which to me is a little odd https: otter. ai Yet [00:16:00] they're willing to let, to not pay for those and allow people to get sick and then pay thousands and thousands of dollars a year to keep them on a ZT.[00:16:30] [00:17:00] The current feelings about, um, people developing aids, um. Initially was thought to be right back at 25 percent Um, going on to develop AIDS. The feeling now is that most people will eventually Go on to get full blown aids. Is this [00:17:30] true or what are the feelings about that? Now, I dunno whether it's true, but those are what the studies are saying. Um, I've seen studies from Berlin, uh, from London. from Paris and from San Francisco, uh, all of which, oh, and, uh, an Australian one as well, all of which tend to say that the figures of people that go on to get AIDS will be closer to 85 to 100 percent rather than the, the low [00:18:00] figures that they were quoting back in the early 80s. And, in fact, the San Francisco Department of Public Health has quite, uh, Blatantly stated that they have determined that between 65 and 100 percent of people will go on to get AIDS unless there is some sort of intervention. That intervention is what I was speaking about before, early treatments. Right. Just going on to the medical profession, your favorite topic, and the various AIDS groups that are [00:18:30] around. In the country at the moment, what I'd like to ask you first is, just with your interactions with general practitioners, um, the problems that you've encountered with them, and the types of things you'd like seen done or changed in their type of attitudes to people with HIV. I must preface my comments by saying that, um, having lived with HIV and with AIDS for, [00:19:00] um, five years now has given me an abiding respect for the medical profession, but at the same time, there are, um, some people within the profession, um, who, yes, we've had problems with. Um, people with AIDS, uh, are generally young, They're generally articulate, uh, they're generally fairly well off, and they're very, very generally gay men. Um, and they're men who are used to taking control of their own [00:19:30] lives, and they're not prepared to sit back and be told what to do. And a considerable number of doctors operate on that. Premise that they will tell their patients what to do and a number of them have had to actually rethink their whole way of dealing with their patients because suddenly they have young men who are getting quite ill who want to take a role in their own treatment. Going on to the whole area of hospitals, there have been a lot of [00:20:00] problems, um, right from the start. Few of them have been sorted out. Do you want to go into a bit about what has been happening there? Uh, there's been problems with hospitals right from the very beginning. Um, which is understandable. We've had no more problems here than they have overseas. Um, and I think everybody expected to have problems anyway. Um, in a number of hospitals around New Zealand, when the first cases of AIDS came along, they were insisting [00:20:30] that people wear gowns and gloves and masks when visiting people with AIDS, and it took considerable work by the New Zealand AIDS Foundation to persuade them that they didn't have to do that. Uh, recently, of course, uh, you may have seen in the Evening Post, the, the reports about Wellington Hospital still maintaining that people with AIDS and HIV had to plastic knives and forks. And the people with AIDS Collect have fought that for 16 months. Um, and it's actually [00:21:00] rather, it's great that we won in the end and that they finally believed us. But, um, it's interesting to note that finally after 16 months, they just turned around and said, yes, it was all a mistake. You were right in the first place. Who are the people you're actually fighting? Well, We're not actually fighting anyone, we're trying more than anything else to work with people. And I think that's why it took us 16 months, because rather than go and sit in their corridors with placards or run to the nearest newspaper, [00:21:30] we tried to go through the proper channels and approach it through the administration of the hospital, through the um, nursing superintendents and people like that. And it took a long, long time. Um, I believe that That more direct action will be necessary in future because I don't intend to see any situations like that last for 16 months again. What about their interaction with the medical staff, the doctors and nurses at the hospital? How have you found that? Excellent. Here [00:22:00] in Wellington, um, the staff of Ward 26 are wonderful. Um, I mentioned an abiding, um, respect for the medical profession in there right at the top of it. The nurses at Ward 26 are extremely kind. They're caring, they're well educated, and they're, they're really wonderful men and women. Um, the doctors there are great. Um, I really enjoy talking to them because they, um, again, they care for their patients and they know what they're talking [00:22:30] about. They know a lot about AIDS and that's a very big thing for people with AIDS because often GP who perhaps has. Only you as, as his one patient with HIV or his one patient with AIDS, you know more than he does. And it's good to be able to go to a hospital and talk to a doctor who knows a lot more than you do. Right. The setup at the moment with AIDS council, um, I'm just a bit sort of hazy on all those areas. Um, the health [00:23:00] department and that. Could you, would you know much about those, um, the make up of those, uh, groups? The major body in New Zealand at the moment is the National Council on AIDS. Um, that's a, a group of people from across the community, who, uh, set up By the health department, but are there to advise the Minister of Health on issues that she should know about concerning AIDS. The thing that they've been doing recently is [00:23:30] writing a discussion paper, which will be launched at the upcoming National AIDS Conference, and from there, submissions will be taken on that paper and it'll be turned into a national strategy. And what comes out in that national strategy, I believe, will be the direction that AIDS takes and AIDS services take in New Zealand over the next 5 and 10 years. In terms of preventive type of programs, things that are shown on TV, the adverts for prevention of [00:24:00] AIDS, uh, How do you feel that whole area has been handled? Um, not very well. The health department is spending a considerable amount of money, uh, educating, uh, People who are not currently at risk, the people currently at risk are gay men, and for the next five years, at least, the people at risk are going to stay gay men. And it seems to me, um, a problem. pointless exercise to pour [00:24:30] millions of dollars into educating what they term the general population when the real need for education is among the gay community. Right. Is anything actually being done about, um, telling them that this is the problem? Yes. They are told, um, remarkably often and the figures from overseas are quoted at. Them because we, in a, in a way we are lucky here, we are a little behind what's happening overseas. And most research that is done over there, we can, um, show them here and [00:25:00] say, well look, this is where we'll be in a couple of years time. Um, and the issue of who is at risk is an issue that they're very, very aware of. And we hope that in the future, their campaigns will be a little more targeted than what they have been in the past.[00:25:30] Thanks to Daniel Fielding for part one of this two part interview, we'll have the second part on next week, that's GayBC, Saturday mornings, 11. 30am. Just remember the Gay [00:26:00] Switchboard is available every night of the week for information and counselling and they are open 7. 30am to 10pm on the following number. 850674. The Afena Clinic is also available for counselling and testing for AIDS and they are at 35 Means Street in Newtown, their number is 893169 and of course that can be done all anonymously. We'll be back as I say next week, 11. 30am on Access Radio 783. See you then.
This page features computer generated text of the source audio. It may contain errors or omissions, so always listen back to the original media to confirm content.
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