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My name's Tom O'Donoghue. Is that enough? That's great, yeah. I'm 38 years old, um, and I have AIDS. I tested HIV positive about five years ago. Um, I believe I probably contracted this virus when I was in America in 1980 and 1981. Um, and I was too scared to have a test, but partly because I didn't think I'd be at risk. I wasn't at risk. I wasn't sharing needles. And I had [00:00:30] maybe five sexual partners in two years when I was in America. Excuse me. And um, I went to a conference here in New Zealand about five years ago and they were talking about the disease having been around probably in the 70s. And that you didn't have to be wildly promiscuous. That once was enough. One unsafe exposure. So, the not knowing got worse than the knowing. So I went and had an HIV test, quite, quite believing that I'd be negative. And lo and behold, it turned out to be positive.[00:01:00] The, the shock was quite great. My partner, fortunately, is negative, still negative after five years. And that's just the way the virus works. I mean, he and my partner and I met a lot of unsafe sex for the first four years of our relationship. And, it's just the way it is. I mean, some people don't survive one exposure, some people survive thousands. And, [00:01:30] I left work, I was at that stage working for a medical and scientific company, and I had, my field of expertise was um, disinfection and sterilization. And, I also sold HIV test kits, which is a bit outright. Um, but, I felt that I wasn't prepared to work 50 or 60 hours a week for the rest of my life, because I mentioned that my life would be a lot shorter than other people's. And so I [00:02:00] resigned. I was well treated by my company. And about a year later, I decided that I'd like to get involved at a more political advocacy level for people with the virus. Because there were lots of issues that were important to us, that seemed to us that we were being addressed by the established age organisations. And primarily one, primarily around treatment. Treatment using information. So we set up the National People Living With HIV Union. And there's a few of us who work voluntary and [00:02:30] we produce a magazine every two months. And I'm actively involved in taking the AIDS message into prisons, Department of Education, um, I'm part of a number of programs on HIV and AIDS. I think that it's been successful because we personalise the virus. Nothing that people can sort of put a face to the rise that has a much more powerful impact. Um, And I had, I had a good [00:03:00] background, you know, too. I like, I trained as a health inspector, and I was a medical salesperson. So I was able to keep fairly up to date with the sorts of information that came through. What else about me? Do you want to ask any questions back there? Yeah, um, tell, tell me where, so when you had your test done first, when you say you sort of, was it just, you were just more worried than anything else? Oh, I was, I was, I was, the not knowing was getting worse than the knowing. And I now, I [00:03:30] now realise, um, what a tragedy that attitude is for a lot of people. But then again, in some respects, the early days were, were kind of frightening and people were too scared to have a test. I've certainly changed my mind the last few years. We strongly advocate that people who have been exposed should have a test. Because, you see, the antivirals which are available [00:04:00] are better off started when you're relatively well and healthy. When your T cell and your immune system is in good condition. But if 500 or less, or 500, a lot of people wouldn't even have had the folliculitis And you can't take advantage of the intervention therapies which are keeping people alive and well much longer, unless you know your HIV status. And not a month goes by where we don't hear of somebody who's been admitted to hospital or has their first news, um, not HIV positive but AIDS.[00:04:30] And they've got sicker and sicker. And I think that's tragic because Um, Those people could well have been having good, productive, quality lives, Um, and taken full advantage of all the medicines that they had, Orphedema, opportunistic infections. But in retrospect, little things have happened like, um, like I got shingles. And that's a sign of immune suppression. It took for a lot of people. But, I remember when, [00:05:00] leaving work, um, and the trouble with HIV and AIDS, of course, is the stigma and prejudice attached to it that was so powerful, even as late as five years, um, And I was far too scared to tell people. And I mean, everybody at work was under the impression that I had cancer. I mean, it was my official line that I had cancer. Uh, except the bosses knew. Um, and then about a year, I carried on that facade for quite some time. And then I went to a National Council and Allies [00:05:30] meeting, four years ago. Um, and they were preparing a five year strategy. And I remember there were lots of doctors and nurses that I used to work, deal with, with. Um, in my other occupation. And I remember thinking that, um, this virus lives, I figured this virus lives on dishonesty. And I wasn't going to have a quality of life while I was holding all this stuff. And so I remember standing up and introducing myself as a gay man, and somebody with HIV and virus that causes AIDS. [00:06:00] Well look, this big burden just unlifted from me. It was like coming out. It was like coming out. And if I was to die tomorrow, I could honestly say that I've had five good years. The last five years of my life have been great. And largely that is because I've been able to be honest with myself. Growing up gay, you get expert at hiding your sexual orientation, you get expert at getting in and out of situations through lies and [00:06:30] stuff, especially when there's pressure on you maybe to have a girlfriend, and all that sort of thing. What I did feel was, if only I'd been able to be this honest about my sexual orientation when I was younger. Because I think that coming out frees people up to realise their full potential. And these last five years I've felt that I've achieved a lot more potential, I've realised a lot more of my potential. Um, I don't, I guess all people [00:07:00] have a bit of ego, I mean. It's extremely important for me though, the reason that I get involved, and that I have been involved, is that I believe that we are essential components of the prevention program. We're like the full stops on the prevention message. And what I'd like, I don't want other people here at my space, you know. And um, as I said, I mean it's been proved time and time again, that the HIV positive message is perhaps one of the most powerful, in both support and prevention. Which can be up to friends and stuff, but not to family. This was when [00:07:30] I was in my early twenties. Um, but I never, it was never discussed at work or anything. I mean I wasn't openly out at work. You know, it never had been. And, yeah, I think the fear, I remember, you know, as I said, the feeling of standing up and saying I was HIV positive was like that same sensation of coming out. And I've really never looked back since. I, um, don't forget it's easier for me though, um, When you look at [00:08:00] issues like, um, I have a house, uh, I have a very supportive, um, group of friends and partner, and I can't be set for my job, whereas a lot of people don't enjoy the sort of anchoring that I've got. So it makes it much easier for someone like me to, to be able to do it. Plus, like, my knowledge base is, is, has gotten good, and I can, um, as a teaching resource, people don't jump on your head, so. I'm remarkably good at that. [00:08:30] Particularly those that want to get involved. Um, We have a saying that AIDS is as much about attitude as it is about a virus. And, We've always said that we're not part of the problem of AIDS, we're part of the solution. And I've been to suggest that if this were a disease of nuns, or politicians, or managing directors of companies, we'd be nowhere near the problems of it. What AIDS does is, is bring up all people's prejudices [00:09:00] about, you know, whores, pofters and junkies, basically. Um, and it's very difficult, like it's quite difficult for, say, a heterosexual man who's acquired HIV. Um, they're often very quiet because they don't want to be labelled as a profiteer or a junkie. Um, and yet the fact of the matter is that we have increasing numbers of heterosexuals with the disease. In fact, on a world scale, it is a heterosexual STD. But in New Zealand, it's still predominantly men who have sex with men. But I don't see that we're going to be any different from other [00:09:30] countries, certainly related to the treatment of the heterosexual. For a while, I felt that, um, There had been nothing done by the established AIDS groups about reintegrating us back within our respective communities. You know, I maintain that people with HIV have every right to live socially, economically, and sexually fulfilling lives. And Yeah, one of the [00:10:00] issues that I feel quite strong about, I mean, I defend the right of HIV positive people to have safe sex. I mean, what's the message of safe sex all about? But often, talking to gay men, um, If they knew you were HIV positive, people said they wouldn't have sex with me if they knew. And yet, at the same time, a lot of gay men expect to be told someone is HIV positive. They expect to know. And that's ridiculous. I mean, if you know, you're going to get them to say, no, I'm not going to go to bed with you. And if you don't say anything, you're HIV [00:10:30] positive, they're likely to be shitting when they find out. But I have to say that, like, in the Wellington area, the Wellington region, there's a, I feel much safer being a gay man and much safer being a person with HIV. Um, because I think the AIDS Foundation have worked very hard at creating a supportive social environment in this area. Yeah, I, a lot of people with HIV, gay men with HIV, express similar sentiments to me about [00:11:00] that I don't feel that comfortable in the gay venues when other people know me. I've been out with people, and because I've got a high ish profile, I know that certain people recognise me. And I've recognised friends and colleagues of mine who are HIV positive, say at the Toledo bar and that. But I definitely get signals like, don't come over. You know, because a lot of the, a lot of the, a lot of the guys are fairly well kept separate. Um, and a lot of people I guess are worried about me. [00:11:30] or something like that. People just make assumptions. One thing I've been critical of the AIDS foundation is that I don't think there's been enough done about reintegrating, reintegrating people back into their communities. Mind you, you see in New Zealand, it seems that most people here rely on their historic family and friends connections as support. very much. Which is slightly different from the [00:12:00] American peer support type programs. There are, yeah, in Wellington for instance, we don't seem to have a very successful peer group. We've got a small one going, it's been quite stable, but it's not as good as say, what's happening in Auckland. But that's because a lot of people don't want to get involved. A lot of people get on with their lives real well, thank you very much. Um, yeah, so one of the, one of the more difficult topics people have to address is, um, Has our community been, [00:12:30] um, accessible sexually to people with HIV? Do you see what I'm saying here? I think that, I think that's an issue that gay men have to look at, that it's okay to have sex with somebody who's HIV positive. It's okay to form a relationship. I mean, certainly it may, may only be for the duration of a few years, or who knows, it could be 20 years. But, You can, people can achieve a great quality of relationship. I'm struck by the [00:13:00] poignancy of situations where both partners are positive. I find it quite desperately sad. Especially one partner going before the other. Um, yeah, I had a bit of a shock last week when I was given an AIDS diagnosis. And while I should know better, it's, none of these still have an effect on me. It's, it seems to move you into a different camp. Um, and I don't really want to have to deal with those sorts of [00:13:30] feelings, but I guess I'm going to have to. I mean, personally I think we should scrub the word AIDS and just have, you know, HIV as a rangeable from infection to HIV illness or related death or whatever. Um, At the moment, you know, things are getting a bit better. I've spent a couple of weeks in hospital. Um, I've lost a lot of weight. I have a type of TB infection. [00:14:00] And the news for that is not particularly good. However, um, I think I'll also go a lot on how I feel. I'm feeling much, much better. I'm a very, I'm very contented. I mean, I've had people say to me, Oh, why don't you set up and go for a trip to Hawaii, and do this and do that. I've done a lot of traveling. I spent a couple of years on a big sailboat sailing the Atlantic. I've had a very adventurous and full life. I've got no desire to travel. [00:14:30] Um, as I said, to me it was more important that I have quality of life and be content. And I can be content and have quality of life here in Wellington without moving anywhere. I've got a nice home. I've got my dogs. And a wonderful network of friends. People who I know I can call on at any time to come and help out. But most importantly is, is having a partner [00:15:00] who's so, so supportive. Yeah, um, There's not a day goes by where I don't think of AIDS or think of dying. And I think that's common to most people with HIV. But it's a matter of having to be positive. Um, And living well. Because the alternative's a nightmare. You know, if, if, if I was to dwell on The number of people that I know who have [00:15:30] died or I've sat with them and seen how sick people get, that can be quite depressing. And I try to avoid doing that. Sometimes it's difficult, you know, energy loss is a major problem for people with AIDS, and just physically getting out of bed, um, can be quite difficult. But, I do, I spend a lot of time doing voluntary work, maybe 30 hours a week, even more. And I find that immensely rewarding, [00:16:00] and I enjoy a good working relationship with other AIDS organisations like the Prostitutes Collective and the Drug Information Group. I'd say that being the HIV positive representative there, that it's contributed to the successful running of the base. And I do a lot of work with the Department of Health. Um, that they don't like the word advocacy, so we have to use the word consultancy. But, you see, there's a lot of issues that people, [00:16:30] policy makers, policy makers decide upon. And they can often be quite offensive to the virus or on the wrong tack. So we try to get them at the bottom level and just say, hey, consult with us. Like some of the literature, we, we found offensive lines in literature and stuff that they've been able to take out. But we, no, I'd say, one of the things I have to say is in New Zealand, um, I came back from a conference in Spain a couple of years ago, and there were 500 people with [00:17:00] HIV and AIDS at this conference. And I thought to myself, thank God, I live in New Zealand. I mean, I know we don't have human rights protection on that, but in terms of quality of medical care and treatment, and accessibility to it, to treatments was as good as, probably the best in the world. Um, I wonder how many countries in the world you can have a, somebody with AIDA to bring up the Associate Minister of Health and have an appointment the next day. And we were able to do that. We have good lines of communication, good access to the Minister, down through all the [00:17:30] officials in the Health Department. And there's a lot of goodwill. Toward us. Um, which probably explains why we never really got an ACT UP going in New Zealand. Because a lot of the issues that ACT UP are concerned about aren't too much of a problem here. But things are looking, we have to remain diligent. Um, one of the major areas of concern for us is the lack of privacy done by legislation. We know that, um, you know, we've had [00:18:00] calls by the police to have us registered no longer in the computer. It turns out that, um, certain patient records have our, have our status recorded on the central computer. And given the fact that, that we don't have privacy legislation. And data sharing is occurring between government departments. My HIV status, I assume, is confidential between me and the hospital specialist and my GP. But we know that that's not the case. In a lot of instances. I've run out, I think I've run out of things to say.
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