 Thank you everybody for coming and thank you Maggie for the invitation. It's really special for me to be able to try and summarise 30 years of my life in one hour or hopefully less and I too want to acknowledge the traditional owners of the land on which we meet and pay my respects to Elders past, present and emerging. I also want to acknowledge my Elders, the Elders of the LGBTI community on whose shoulders I stand. We didn't get here yesterday, we came through many generations of people who fought and struggled for years for rights and dignity and equality and whenever I do a talk on HVAs I'm always reminded I have little voices in my ears saying don't forget to tell them about us Phil. So I also want to acknowledge absent friends, the people who we lost. Oh yeah, I also need to warn people. Now you can't talk about HVAs without talking about sex and drugs and lots of sex and lots of drugs so there's probably gonna be images that some people might find confronting. Be warned and the other thing is of course we're dealing with some images of some very sick and ill people. Now some basic biology 101. This is the virus, this is what Francois Bar-Cyrusie saw when she looked at an electron microscope on 20th of May 1983 and became the first human being to see the virus. That little red thing there, those little red things there were the first representation was seen by scientists of the virus that up to then had been unseen but had been causing havoc in various parts around the world and even this simple illustration is riddled in controversy and anger and fights and is a complete metaphor for the whole world of HVAs because there was a bloke in America called Robert Gallo who thought he discovered it. The French thought they discovered it so as scientists who want to do they exchange information and Gallo got to publish first and claimed that he'd he discovered it first and you know he was he was the hero of the piece. Well the French of course were slightly miffed as the French can be and they started a series of disputes which was resolved only in 1987 with an agreement between President Reagan and President Chirac. First time the two heads of state actually had to draw up a legal agreement between them acknowledging that the French had in fact discovered this virus. Gallo's publication included he nicked some of the French material and published it under his own name without accreditation but it was only discovered and finally put to bed in 87 and sure enough in 2008 the real prize was won when the French were given the Nobel Prize which is what the whole thing was about. But there in five minutes is an example of the level of tensions and animosities and jealousies and squabbles and political fights go on that have always been around this virus and around the response to this virus. I hope that sets the scene for what we're going to see in the next little while. Some basic immunology. To understand the immune system you need to the best analogy I have that's been given to me was I need you need to think of a classical music orchestra with you know violins and oboes and harps and everything. When they play together beautifully it's what they play wonderful music. But this virus the CD4 virus is particularly programmed to attack the one person who can put that orchestra into disarray the conductor and that's a CD4 cells. So this virus goes for the CD4 cells the immune system starts to fall apart the body becomes defenseless and a whole range of opportunistic infections and illnesses that are normally kept under control every day. Somebody become dangerous and eventually deadly. Now some of those infections include type of pneumonia, carposis sarcoma which you will see in a second, cytomegalovirus which causes blindness, toxoplasmosis, candidiasis, cryptosporidiosis, histoplasmosis, dementia, wasting, a whole range of very ugly and awful diseases. And for people with age in the early days you didn't get one you got a few at once and the doctors might be able to fix up a couple of them but then they come back again and again and again and again until finally the body was overwhelmed. Okay when it was first noticed in the community the first mention of age or something something that something was up something was wrong is in a New York gay magazine called the New York native which is a fortnightly gay newspaper in New York. A couple of people overheard some doctors having a gossip about some strange diseases. When the newspaper went to the New York public health authorities for confirmation they denied it. Oh no nothing to see here, move on, move on, nothing at all. And it was interesting that this is 1981 so this is the year Reagan is elected and this is a year after WHO announces the death of the end of smallpox. So there was a whole era of we'd won over infectious diseases and so we were all apparently living in a brave new world. So this is the 18th of May one month later on the 5th of June 1981 came the publication. The morbidity immortality weekly report MMWR is put out by the Centers for Disease Control and Atlanta every week and it's sort of like a clearing house of weird diseases. Every outbreak of disease in the world is notified here so avian flu, Legionnaires disease, cholera whatever all get documented and listed in MMWR. I'd never heard of it before but it became required reading after a few years. This is a report of a cluster of cases by a doctor called Dr Michael Gottlieb who was in Hollywood in Los Angeles whose most famous client was Rock Hudson. Here he had five gay men, three of whom had already died and two more were very sick. He thought this was unusual, a cluster that was worth noting and recording so he wrote a letter to CDC to the MMWR and MMWR did what it does best by publishing that article over the next month suddenly doctors all over America and parts of Europe said oh hang on I've got cases like that too. And so a month later there were 41 cases and this is the first major newspaper report. It's New York Times. It's buried away on page 41, one column and it was on the edition before the July 4th holiday. So I remember seeing that page as a paper and on the other side of the page with the lyrics to the Star Spangled Banner. This was just buried away as some sort of little odd footnote. Something strange was happening but already you've gone from five cases in one month to 41 next month. This gives you an idea of how much people would take notice of this and how fast it was being notified. So CDC followed up in August 81 and showed that there were increasing numbers of cases of Carpoza sarcoma and I hadn't heard of Carpoza sarcoma. It's basically a skin disease. It was predominantly found in older Mediterranean men, Greek and Italian men and it was usually not invasive and not a problem. Here in this population of young sexual active gay men it was becoming invasive and what you see there are some of the lesions on the outside of the body. They're ugly enough and make life difficult for people who had it but the real damage was the lesions getting inside under the organs. This is where they cause their real damage. The other thing was a Pneumocystis carinii pneumonia which is just a hacking cough along with night sweats and weight loss. It was probably the most common of the early symptoms and so people who were worried if they started coughing got really worried really quickly. So even by the end of 81, so in six months time there were 270 cases but most importantly here 121 of those were dead. The mortality rate was astronomically high. Most infectious diseases that is not nearly as high as that. By early 82 talk of a gay player who had already surfaced in parts of San Francisco, Los Angeles, New York and parts of Europe. There were handmade poster signs put up in windows in the Castro in San Francisco and there were people reporting cases of things like general herpes, candidiasis and toxoplasmosis. In January 82 a guy by the name of Larry Cramer who is one of the absolute heroes of this epidemic held a meeting in his living room and six of his friends got together and they formed the Gay Men's Health Crisis the first organization in the world from the community designed to work on HIV AIDS. By that stage it was called GRID, Gay Related Immune Deficiency because under gay men were getting it. The trouble was CDC were getting reports and in June 82 they can be in the conference of all the doctors who were interested in this issue and they suddenly discovered that there were people from Haiti who are being infected and getting sick. There were people who were sex workers and client sex workers who were getting sick. There were people who were blood recipients either from transfusions or people with hemophilia who were getting sick and so they had to change the name from GRID to something else and it became a quiet immune deficiency syndrome or AIDS. By this stage of course Robert Gullo was doing his big bitter about you know he discovered the virus and Ronald Reagan's health secretary, Margaret Heckler, declared bravely that the Americans had come through and they discovered the virus and the cure was only two to five years away and of course that was to the term of office but that's another story. In Australia the first case was diagnosed by Professor Ron Penney in Sydney. He met an American tourist who came and visited him late October November in 82. He'd been over here for a while, wasn't feeling very well. Ron did a blood test and found his CD4 cells were under attack and diagnosed that he had HIV he had AIDS. He flew back home to America and apparently died a few months later. The first case of an Australian being diagnosed with AIDS was in Melbourne in where it was in April 83 and he died a few months later as well. By this stage people were presenting when they got very very very sick and they died at the mortality rate was very high. We in the gay community knew something was going on because we were reading the overseas gay press but we also had access to some really important anecdotal evidence and that was quite a stewards whether or not who were flying from Sydney to San Francisco and Los Angeles every week and coming back and telling us stories about skeletons walking in the streets and people disappearing and not just not being seen and people who are very very sick being visible. We also had a similar network amongst Leather boys, the boys in the Leather they have a very strong international network as well and they were reporting cases from Amsterdam and Berlin and New York as well. So whilst it was anecdotal and whilst it was personal it still had alarm bells ringing. The other people who we relied on were a small number of gay GPs who had practices in the inner city who were starting to see people turn up in their waiting rooms with surprising range of diseases and illnesses that had no explanation or reason for them. So all this informal intelligence and clinical observation led to increased concern. In America the arrival of AIDS coincided with the arrival of Ronald Reagan and his government's commitment to cut public funding to public health amongst other things. We were lucky we had the election of the hawk government and the arrival of Neil Blewitt as health minister. One of the strokes of luck that I can never ever be more grateful for and Neil and his staff had a big agenda. Their first item was to introduce Medibank and like all other incoming ministers they were greeted on their first day in the office with a briefing book put together by the senior bureaucrats. One of the most important issues to be dealt with and there were 40 of them. Number 35 was this grid slash AIDS and Neil told me some years later that many of the people in the room were quite embarrassed to talk about it and didn't quite understand it and thought it was just an aberration it was nothing much concern and it'll pass and don't worry about it minister we'll look after it. Next, fortunately one of Neil's staff a guy by the name of Bill Botell his ears pricked up and he knew that there was something serious was going on. So he took it on himself and with other members of Neil's staff to keep an eye on this issue and that I think was another stroke of a very important luck. The medical fraternity of course weren't sitting back and waiting for people to die. The National Health and Medical Research Council had determined that this was a serious issue. It had something to do with blood so they set up a working group and they appointed Australia's premier hematologist a guy by the name of Professor David Pennington to head the what became known as the age task force. Now David is a superb medical politician a ruthless operator and a fantastic you know political operative but he never had a HVK slowed he never had actually had clients in his waiting room he was a medical politician a very powerful one and he and I had lots of disagreements over the years but his belief and most of his colleagues was that this was a traditional public health crisis and that doctors knew what the answers were and that we should just listen to what they had to say and everything would be okay. A traditional public health model would save the day and that's all that's all we really needed. I could give you stories about sometimes how the age task force would put out a bulletin with absolutely no understanding of its response in the community and not and be quite shocked when the media picked up on and made headlines and made the wrong headlines out of the story or when people argued back against the task force how dare you civilians question our authority. I can tell you lots of stories about that but we haven't got time. Suffice to say that the task force went about its merry way and produced bulletin after bulletin after bulletin you know about electrolysis about barbershops and about blood donations and about semen donations and about bone grafting and about hydrotherapy pools and all the time just treating it as a medical condition quite isolated from the social consequences. The trouble was every time they put out a bulletin people thought of the worst case scenario and they thought oh that might have happened to me and they had no idea about media management and about public relations and what you call spin. Now this is where I'm going to get in trouble with my friends from Sydney. So please forgive me okay. Number of the women just ruined the day. Thank you Don. To understand the gay community response to age you need to understand the difference dynamics between Melbourne and Sydney. In Sydney it was still illegal to be home sexual until 84 in Melbourne legalization happened in 81. In Sydney there was a thriving gay community scene with a number of organizations and some would say competition for turf some would say clashing of egos some would say well I wouldn't say that but some won't. But it was basically a number of groups had to learn to work together if they were going to deal with AIDS in a coherent way. And that federation approach marked as different completely to what happened in Melbourne. The problem with Sydney of course was you had these people and these organizations and these existing power bases trying to work together and at the same time they were swamped with cases quickly. Sydney had a lot of cases very quickly and so people had very little time to prepare to train to organize and that I think was a real problem. And the other thing of course was I had doctors there who wanted to research and help and they kept on saying things like come along and join our research proposals you know come to our meeting and sign up for our research. And the gay community quite rightly said look if we sign up for your research we're admitting to breaking the law. So we want your help in helping to change the law and the doctors to their credit did step in and did lend some support for that process to happen. But you need to forget remember that this is only a few years after the 1978 Mardi Gras police riot and the tension and animosity were still fairly rife. And unfortunately the blood bank in Sydney decided to put out a calling for promiscuous homosexuals not to give blood. And that was like a red rag to a bull. And of course there was a public demonstration and everybody got off on the wrong foot. And in hindsight the advice was technically correct. The trouble was there was no definition of what promiscuous meant in the old saying that somebody was having more sex than I was. And that's what we had. That's basically as much information as we had in those days. So in Sydney these groups had to come together in an era of illegality to work together and facing a caseload to try and fashion together a response. Meanwhile in Melbourne, good old sensible Melbourne. We had one organisation called the also foundation which is sort of like a gay rotary. And it had some concerns about this new health issue and so it set up a health subcommittee. And a few of us, I think I'm the only surviving member of that committee now, we set up a meeting of doctors. And this is the doctors on the night. We had 300 people crammed into the Royal Dental Hospital auditorium which was the most number of gay people I'd seen in the daytime in my life. To listen to these doctors tell us basically not much. That's another look at can I get this working? Anyway, the guy on the left is David Bradford who's the head of the veneerial diseases clinic. Then there's Ian Chenoweth and there's Bruce Meneagle who's now passed away. Then Peter Meese looking down at his note paper. He was my doctor. He died of AIDS. The guy next to me was Vaughan Lenny who was a lovely gay doctor in Perran who had a grand piano and chandelier in his waiting room. And was ever so camp. But when you see his waiting room when you had mums and bubs and gay men mixing together it was just a lovely slice of life. The person you might recognise is one on the end. The only straight bloke in the room who was an immunologist from the Royal Melbourne Hospital who had a cohort of gay men who were studying their immunological capacity. His name's Dr Ian Fraser. He went on to discover the virus for Gardasil for papillomavirus. But that night, like I said, he was the only straight bloke in the room and when he spoke he was a bit nervous because he didn't know what to say to anyone. With a very heavy Scottish brogue and he was sweet. Anyway, the meeting went for two hours and we asked lots of questions and the basic question that was asked was what do you recommend we do? And David Bradford in his very straightforward style said don't fuck with Americans. And the moment he said that his gas went around the room because most of us had. And or most of us either just came back from America or it's plenty to go to America because in those days Australians were the flavor of the month and the gay games had been on in San Francisco and it was just a time when we were we loved that new playground and a lot of people in the room got very very concerned and very quiet all of a sudden. After two hours of questioning an intervention happened that I'll never forget. A woman by the name of Alison Thorn stood up and said this is ridiculous we've got to do something to defend ourselves. No one's going to look after us we've got to look after ourselves. And I said that in a month's time we get together and we organize one committee to speak on behalf of the community and we fight as we organize and we plan and we agitate. Well done, excellent Alison. Absolutely true and that's exactly what we did. So we had one organization from the very start what we didn't have in Melbourne was a case. We didn't have a case load for the first six months so we had time to train and practice and recruit but we had no one to be a patient no one to be a client and it was just the dichotomy was very real. This is a meeting we had and I'm sorry about the photographs all the photographs that you feature me so it's not me blowing my own trumpet it's because we didn't have smartphones back then and we didn't take photographs of everything including our meals and so I've had to look through my own photo albums to dig out photos of particular events and they just happen to be photos that I'm in doesn't mean I was central to it it just means I was happy to be around at the time but that's me chairing the meeting I was asked to chair it because I'm an old school teacher and like I said before when you've taken a double class of fourth form maths on a Friday afternoon running a gay community meeting is a doddle so I was asked to chair the meeting that's Chris Carter in the middle he was Don Chip's political advisor he's now deceased and Ian Dunstan on the left was a secretary of the also foundation and he's also now deceased in that room we crammed 50 people including a whole bunch of drag queens leather boys bar queens interested observers gay men from every political faction you can imagine except the liberals who weren't any gay liberals back then and we decided to speak with one voice and that was a very interesting development when the motion was moved I didn't realise how important that was but it became critical over the next few months and years because as you can imagine the media wanted to know more about the story and we only had one voice we could speak with some authority Sydney unfortunately was cursed with a certain person by the name of Paul Dexter who decided upon his own physician to call himself the gay army and to use the media to push his own agenda and question the scientific validity of data and question the authenticity of the gay community and basically cause trouble and the distraction and the diversion of that cause and created just was just horrible I don't want to focus entirely on Melbourne and Sydney even though that's where the majority of cases work all the other states built up age councils over the next few months and years and each one of those still exists apart from South Australia who was defunded just a year or so ago and that's another story I could talk about and I won't and all those organisations spent time trying to get in front of their health minister and the response I had in Melbourne was from Tom Maropa why all these strange homosexuals trying to get a meeting with me they couldn't understand what the urgency was about they soon learned and we'll come to that in a second now there came a particular point in time when I really knew that we were in trouble and it comes from this article here in this newspaper in Melbourne there's a bit of a backstory the communist party owned a bookshop called the International Bookshop they bought out the Dr Duncan Bookshop of South Australia which is a gay bookshop in Adelaide and bought all the stock over and so on one wall you had Marx and Engels and Lenin and you know Russian propaganda on another wall you had lesbian novels and gay periodicals and comics and calendars and magazines and in the middle you had this weird collection of customers old lefties from the Spanish Civil War and 50s fighting Robert Menzies and young guys and lesbians getting the latest news from around the world this magazine arrived and the head article 1112 and counting was written by Larry Cramer now I don't have any many of you know Larry Cramer's writing but his style is absolutely incendiary for a very good reason and let me just read out the first couple of paragraphs of this article and you'll see why I stood in the shop just shaking if this article doesn't scare the shit out of you we're in real trouble if this article doesn't rouse your anger fury rage and action gay men may not have any future on this earth a continued existence depends entirely on just how angry you can get I'm writing this as Larry Cramer myself and my views are not to be attributed to the gay men's health crisis I repeat our continued existence is gay men upon the faces of this earth is at stake unless we fight for our lives we shall die in all the history of homosexuality we've never before been so close to death and extinction many of us are dying or are already dead before I tell you what we must do let me tell you what is happening to us there are now 1,112 cases of serious acquired immune deficiency syndrome when we first became worried there were only 41 in only 28 days from January 13th to February 19th sorry February 9th 1983 there were 164 new cases and 73 more dead the total death tally is now 418 20% of all cases were registered this January alone there have been 195 dead in New York City from amongst 526 victims all of all serious age cases 47.3% are in New York metropolitan area these are the serious cases of AIDS which means carposis sarcoma pneumocystis carinidmonia and other deadly infections these do not include thousands of us walking around with what has been called AIDS various forms of swollen lift glands and fatigues the doctors don't know what to label or what they might portend the rise in these numbers is terrifying whatever is spreading now is spreading faster and more and more people come down with AIDS every day and for the first time in this epidemic leading doctors and researchers are finally admitting they don't know what's going on I find this terrifying too as terrifying as the alarming rise in numbers as the first time doctors are saying out loud and up front I don't know for two years they weren't talking like this for two years we've heard a different theory every few weeks we've grasped at the straws of a possible cause promiscuity, poppers, back rooms, the bars rimming, fisting, anal intercourse, urine, semen, shit, saliva, sweat, blood blacks, a single virus, a new virus repetitive exposures to another virus amoebas carrying the virus drugs, Haiti, voodoo, fragile, constant bouts of amoebasis hepatitis A and B, syphilis, gonorrhea those were all things that were being put up as and by this stage of course I was I was I was in shock and as you read the rest of the article he talks about how we need to organize and what we need to do that clarion core pierced through and I you know something realized this was going to be something I was going to have to I was going to have to do something about and friends of mine were going to have to do something about the other time I realized that we were in real serious trouble I had an opportunity in September 1984 to go to San Francisco for a month and I took my husband, my now husband, boyfriend then, with me and I spent some time at the general hospital, the new ward and talked to the doctors and nurses there and I went to the San Francisco AIDS Foundation and sat down in a room with a young bloke by the name of Paul Castro I'll never forget him the first person I've ever met in my entire life who was covered from head to toe in Carpozio-Sacoma and he sat there gentle, sweet and just talked about his life and what it was like living every day in that city living with that that illness and living with the knowledge of his imminent mortality and you can't you can't help but when you hear personal stories like that understand that this is a real issue and it's going to become worse and we have to do something about it we were lucky in Australia at that stage our educations were trying to work out a way of teaching gay men we knew it was something to do with semen or something to do with blood something to do with sex so we had to teach gay men how to use condoms we didn't have any scientific real hard evidence that this was the case but we had a reasonable idea that this might be a good preventive measure so we found this model was developed by psychologists who work with the San Francisco AIDS Foundation called Stephen Moran and his five points sum up what I think is the best framework for looking at how to change human sexual behaviour because we're talking to a better population of men who'd never thought that they'd have to use condoms in their whole life that was the one thing they didn't have to worry about now yay but now suddenly they've got to learn to use them all the time every time and those five points it's a personal threat it's preventable you can manage the change you can still have a good time and you must know that all your friends are doing this as well that model became the basis and the framework for most early age education now this was written in 985 what I want to do is compare it to what's still regarded as the gold standard for good health promotion worldwide today that's the Ottawa Charter which was written a year later but the the the overlaps and the similarities to me ring very true that this is the best thinking that health promotion professionals around the world could come up with in terms of how to change behaviour and we were already doing it in HIV AIDS I think it was very prescient okay now we're getting the dirty bits early education when it first started we need to get information out to people we need to get information out to game in and the two approaches here the two different stories are quite interesting the one on the left is called rubber me which has I think the honour of being the first gay community produced education resource in Australia produced in Sydney initially I believe from Gatwick Garrett Passage told me in collaboration with the health department and it was done in focus groups and it was tried and it was everybody seemed to like it then the health department saw it and freaked and we threw their funding and so the gay community went to the Bobby Goldsmiths Foundation and the gay counselling service and found the money and printed it and distributed it themselves and that's another metaphor for the continual tension between the need to be explicit and clear about this disease and about how to prevent it because we can't just stop having sex we're going to be able to modify the behaviour towards certain sexual practices and the worry of governments and taxpayer money being used to promote indecent wrong immoral etc etc or things that are just too courageous for some ministers to take notice of I think that's quite mild but at the time it was a fuel on the right you've got the material we produced in Melbourne the top was a leaf that I brought back from San Francisco when I visited there in 84 put out by the Sisters Perpetual Indulgence now people might think that that's a funny name for a bunch of men who dress up as nuns and you know that's just a bit of a laugh though actually the pioneers of safe sex education they actually went in and talked about safe sex education in San Francisco long before many other people did and I will always have a soft spot in my heart for them and for drag queens because they are visible and they stood up and they said things when it was hard to say it we got hold of their leaflet and we had to Australianise it because a lot of the language they used over there was just you know yanky nonsense so we rewrite it and that's the leaflet you see on the right-hand side the poster in the middle now that was designed based once again on a poster that I'd seen in the New York native it was designed for New York saunas very similar and that's where we got the idea from and we quite frankly we ripped it off and I'm not ashamed to say that and that pink poster is still visible in some premises in Melbourne if you go to a place called Club 80 most of you won't but some might you'll see it still on the wall up there and still regarded it as one of the better educational tools we ever had we had to find a way of keeping safe sex hot and keeping it interesting and making it funny making it enjoyable this was a poster and a billboard that I don't know if many of you remember it but it was on the side of the road and it was in women's magazines and it was in Manchester shops in Myers and you know all these places at the time because the people who buy sheets are women and women find cute young men half naked in bed attractive or so they gave in and so we thought hang on they're running this advertising campaign let's leverage off it and let's try and do something that actually uses this and modifies to our needs and so the boyfriend of our education group volunteered and became the well not so much to face but the body of our first safe sex poster where we used the same theme and plastered it all over the place and that poster eventually went national and I think that whole notion of expropriating a common thing and a popular image and making it twisting it to become an educational message is very important we had to so we had to be actually clear about how to use condoms why had to use condoms how to actually put a condom on how to use lube with it as well and how to how to negotiate that interaction with a potential sexual partner so we had to use explicit language and explicit images and these images are some of our favorites the one on the left is from San Francisco Dressed for the occasion one down the bottom left hand side is from West Australia used lube to keep wet is the one that this is working now no it's not Maggie can you make that work for me please oh there we go put it does this little one go up the top okay there that's a Queensland poster for using in gay saunas this is one from Sydney very famous six tips for hard cocks it opens up and shows you a step by step process about how to actually use a condom properly and that proved very popular no one even knew who the model was they all wanted to find out he was a people who were desperate to find out who that bloke was they all wanted to meet him I don't know why I always loved the New Zealanders because they combined safe sex with eroticism and gentleness and that I found a really lovely message up here there's a Melbourne thing that we try to explore otherwise of having sex it wasn't just about wham bam it was actually about other things you can do to create pleasure and that was really important and this one I always put in because it's my favourite overseas when it's in Germany and I just love the joy and the happiness of you know that we wanted to make sure sex was something that people still found funny and still found enjoyable and the other good thing about the Germans is that they monitorised it they actually put a brand out of condoms and they'd make money out of every condom sale and that helped fund their education campaign which I think was really clever marketing there's always been a connection between AIDS prevention work and art and the most stunning example in my mind is a lovely man by the name of David McDermott who's no longer with us but he was commissioned to produce a series of posters and t-shirts stickers badges what not for the AIDS Council of New South Wales and these images amongst the most popular and the best of seeing over the years in terms of in terms of agitating propaganda and educating not only in terms of condom use but needle use drug use and needle use and the notion of positive and negative people because by this stage the test had arrived and there was some worry about the growth of what I call antibody apartheid and the separation of people who were positive from those who were negative and for a community under siege you don't need to be divided in fact you can't you've got to stay together and this material helped to reach that depth that enormous gap there was other educational materials we used for example you go to a gay bar and somebody's wearing a badge that starts a conversation so we had that little safe sex tick for years and that was the opening line of a conversation and you knew that the person you were talking to was aware of and practising safe sex this milk carton I love this one of my favourite educational tools through the trade war council in Melbourne we had a chance to get the side of a milk carton for two months and the number of conversations that happened in the breakfast table over a bowl of weak picks Mummy what's safe sex in age our phone lines ran hot and that was got out to all the suburbs all over Melbourne and I think that sort of implosions in little households had a remarkable effect the other thing are the beach stickers a lot of our population don't go to gay bars or gay venues that use things known as beets public places for anonymous sex some gay men some bisexual men some closeted straight men who you just want to explore we had teams of people not that many that's a stage photograph otherwise it'd be fairly intimidating if we go to public toilet and there's 20 bikes lined up but they went in groups of two or three and they stuck those stickers up in the urinals and on the roof but they couldn't be reached and torn down and just told people to ring that message ring that phone number I've got the instructions here for the beach teams to use and I just think it's really interesting they provide lacquer so that the stickers could be would stay up longer and quote members of teams should not do the beets while they are involved in putting up the stickers and that's something that was very hard to do then came as much education as we tried the virus was already spread and the days of illness and death started and there were people in this room more than I have seen horrible days and horrible weeks and years when our friends basically withered and died like I said it was slow to start with an escalated it was rapid in Sydney and it maintained a high level in Sydney of case load and living in wartime people always talk sometimes talk about aids being like living in the war it was to some of us but for others it wasn't I could wake up every day and go work and live and work and you know do aids work all day and then go home at night and have a quick meal and go out to an aids council meeting and fundraise or you know a planning meeting or something like that and I'd be I'd be doing it all day every day but I could walk down the street in my neighborhood and know anything about it and when my mum talked to me about World War II she told me about how the whole population knew about the war the whole population contributed and the whole population was part of it it wasn't this wasn't the case there were some of us who were right in the middle of it and we could be right next to it somebody who didn't know a thing about it and that that disconnect was very hard to share and to be part of then we had obviously the daily visits to the hospitals and people taking therapies and that poster was hanging in in the officer where I worked at the health department by my boss and I still think it's one of the most poignant of it a lot it's not an Australian poster it's a Californian poster but it summarized for me one of the the key issues we had here and that was that we weren't lepers we weren't people who deserved any bad treatment one population I'm just going to I want to touch on quickly and I know this slide did a lot of writing and I'm sorry about that but the people with him are failure often don't get mentioned a lot I've talked a lot about game in I always talk about game in the people with him are failure are a particularly important population here a very small group of people only about two to three thousand people all men it's genetically carried carried by the woman given to their sons and up until the 70s their lives were basically run by the fact that they whenever they had a fall or an injury they had to bleed and they had to leave school or leave work and go into hospital in the 70s a thing came along called factor eight which was a clotting extract pulled out of three thousand samples of blood and with factor eight they were free to have the bleed stop and they go straight back to work back to school and their lives were as disrupted as they were before and they weren't suffering from the arthritis and the other chronic conditions they were likely to get the trouble is when you draw factor eight you draw from three thousand blood samples and early in 1984 the news came through that most of the factor eight that had been used had been infected and something like 80% of people with hemophilia ended up being HIV positive having AIDS for that population they suffered dramatically in terms of the size of their population the scrutiny they were under because you couldn't hide hemophilia you had to tell the principal at school that you were hemophilia yeah, yeah, yeah your boss knew at work because of the days off off work and once again there's a whole argument about innocent versus guilty victims don't like that word but it was this population does require some acknowledgement of the specific torture they went through mercifully they were led by a wonderful woman by the Virginia Ross who worked her backside off to try and channel the anger from people with hemophilia away from thinking that gay men had done it deliberately into just another example of one of the bad cards that had been dealt with in their life and eventually in 1990 there was a settlement a financial settlement because a lot of these people were breadwinners and families were in real strife I still think that still reinforces the guilty and innocent dichotomy but in terms of the other fights that we had to fight I prefer to save our energy for something else now the gay community started to organise both locally and nationally and a couple of people from this photo are in this room today you may well recognise this bloke here he's in the third row Don Baxter who was the first president of the of the of the Queen's he's a wild age councillor sorry Lex Watson who was there was a sorry he was the first president you were the next in line Lex was recently deceased God bless him Greg Tiller Greg and now I've missed a big hair that's what I forget I forget Greg there's Brian Dave from Queensland who's just been given an order of Australia Medal that's Jim Arrachney from Canberra Adam Carr who wrote most of the early stuff on HIV AIDS that was in the gay press this bloke here with his arms folded and a big smile and you probably don't recognise him there but if you go tonight and look up South Australian Environment Minister that's him it's Ian Hunter he's now in the weather law government as a cabinet minister so one of the good things about this group was we had a lot of smart people a lot of really energised and intelligent and fabulous people who worked really really hard Don is still doing amazing work for a FAO on an international level these days many people here spent their whole life working working for HIV and that that can't be denied I just want to show you this photo too mainly when we set up an age trust to try and get big corporate donations it didn't come for a lot of reasons mainly because I think the the philanthropy isn't the same here in Australia as it is in America we were modelling ourselves on Elizabeth Taylor and what she did and we thought we could do the same in Australia because we have Medibank and Touchwood and we have a reasonably good public health system not the same situations in the Americans and so we set up the age trust anyway Archbishop David Penman from Melbourne who's now deceased was a lovely man and a wonderful contrast to the Archbishop of Sydney who was a horrible man and Carla Zampatti who opened many doors for us in the fashion industry it helped us raise a lot of money and of course on the left a bloke who I could never sing the praises of enough wonderful Justice Michael Kirby who's calm tones and amazing intellect has saved the day on a number of occasions both locally nationally and internationally I'll never forget he gave the summing up address at the International Age Conference Stockholm in front of 15,000 people and in 30 minutes gave the most elegant presentation of a whole week's worth of workshops and actually finished his quote in Swedish and that they loved him because he quite a duck had a skull at him and so the host just thought he was wonderful which he is and continues to be and and has always been a voice that has calmed and has been logical and ethical and so deeply appreciated that I can't speak highly enough of him now please don't laugh but I had to use this photo A to prove that once did have hair but and B to show what it was like working in the health department this was an early late 85 and it was interesting because I was one of the four of us who brought into the health department to work on AIDS two of us were gay men one was a woman to work on injecting drug use and the other guy was straight like was brought into work on schools and he's now actually gay but that's another story okay there's so much history to tell I walked in but before we walked in we were told by our boss not to reveal our HIV status to anybody I didn't know what mine was but my other part other worker he indeed and he kept it to himself there's a you'll notice a Mardi Gras poster on the wall and a safe sex poster on the wall that was considered quite okay for that the health department in those days but before we went into that unit the staff in that unit actually had to have an in-service training day about how to deal with homosexuals because many of them many of them had never met a real life homosexual before and they were worried that I was going to come in and drag and you know the straight boys were worried I was going to erase them off or you know you know but I actually had to learn how to address me properly you know like Phillip and that was it was quite a a culture shock and this is 85 it wasn't this wasn't that long ago people in the health department who'd never met a homosexual before sorry an open homosexual I knew lots of them in the building because I danced with them but they had never come out to their work months the other thing I wanted to point out was the desk this is how we built the response to A's in Australia a pile of papers a typing pool a fax machine in the corner and one little rotary dial phone now if I had to make a phone call interstate which often happened because we had a lot of people in Canavera on the line and people in Sydney obviously would talk to I had to ring up dial over to get an outside line talk to the operator tell her who I was tell her who I was going to call how long I was going to speak to them for and what I was going to talk to them about and then if she thought it was important enough I got a line because yesterday phone calls on those days were expensive and you know you couldn't just grab a phone and just do whatever you like or you could wait till after six o'clock when they were cheaper stay behind at work and make the phone calls in the other thing that you'll notice on the table is something is missing no computers no emails no smartphones no Google no word processing it was all done by either phone face to face and I think on reflection that's a real blessing because we had to have really tough conversations with a lot of policymakers and ministers and funders and doctors and others and the only way to do that is by looking them in the eye and saying look I've got friends who are dying you're not getting out of this room until we come up with it with an answer to this problem and that's it and we just stood there toe to toe literally day after day after day and those conversations I mean I had to explain some gay sexual practices to some of the doctors whose drawers just hit the floor I also had to do the same with Ida but that's another story she was shocked but that notion of doing it face to face person to person is very powerful and it was the only way really to explain the seriousness of the situation and the importance of the situation I'll try and speed up we talk about heroes a lot to me these are the real heroes the people who stepped forward from all over the city all over the country all over from the bush and from town the people who volunteered they were ordinary fuck who just decided they wanted to do something they had friends who were getting sick they had family members who were getting sick had neighbors who were getting sick and they stepped forward some were good at support and they've learned how to become basic barefoot nurses and they spent their time in care teams wiping up vomit and cleaning up shit feeding the cat running the house buying doing the shopping holding the hands others were educators who ran programs that were world-class in terms of research and effectiveness others were fundraisers some ran offices some provided legal advice and helped people who faced cases of discrimination but it's the sheer numbers of people who stepped forward and wanted to do something in the face of this epidemic and those are the people who are often unsung but who are always the people in my mind who who are real heroes it was a way it was a sign of solidarity it was a sign of being able to do something I've got something I want to say here but I'll move on because we need to get to some important stuff then one day it all changed November the 15th, 984 I don't know if many of you remember it I'll never forget it I had I was in the I was in the health department at a meeting and one of the ministers' advisors came down and said, Philip, have you heard anything about Brisbane today? I said, no, no because, you know, back in those days we didn't have phones and, you know and IT she said, oh good, that's fine thank you, bye I went home that night and that afternoon it was announced by the Queensland blood bank and health department that four babies had received a blood transfusion three of them had died and one was very sick and about to die and they traced the blood back to one donor who they had run the hour before the press conference and told him that he had AIDS and he was, as you can imagine, devastated that night it was the lead story on all the TV stations the next morning it was page one, two, three and four of every newspaper and it was two weeks before the federal election and Bob Hawks said to Neil Bluett, take this issue away I don't want this part of the election campaign so please, get rid of it and so Neil and if anybody tells you that politicians can't move fast they're lying that was Friday two days later on Sunday Neil had convened a meeting in Melbourne of all state and territory health ministers and the head of the AIDS Task Force he wanted to invite us in from the gay community but the Queensland delegation said that if a known homosexual walks in the room we're walking out under orders of cabinet and so we did the easy way we just had a meeting with Neil before the meeting and a meeting with him afterwards and told him what we wanted and got what we wanted that was easy but in that meeting a national advisory committee was formed money was found and a cost shared agreement was set up and on the Monday morning I had breakfast with Neil and he said we've got a name for a person who might head that national advisory committee what do you think of this? and he passed me a bit of paper and it said I had a butt rose and I thought you little beauty a perfect person to explain age to Mr and Mrs Middle Australia she would be absolutely fabulous at it and she was she was she was fantastic he also included he also wanted to put me on the on the committee and harking back to my old student politics days I said I know there needs to be two of us you can't just have me you need to he said why oh we're going to have Sydney and he said okay but my argument wasn't so much about geography it was about moving and seconding motions and if there were two of us we could actually move the agenda but if there's just one of me I could I could be you know pushed off of the side that wasn't going to happen so we had a national advisory committee formed that had representatives of the Hemophilia Foundation the gay community the blood bank some doctors members of the task force and Ida chairing it and Ida knows how to run a meeting she's a very very efficient chairperson this is all well and good but meanwhile I've been up in Queensland there's a young bloke who's sitting there quietly falling apart his name is Ian I got to meet him he was a young boy at 25 years old he came down from the bush to live in Brisbane and he was a good good kid shy, quiet, gorgeous it was a tough little bit and he started giving blood because he thought it was the right thing to do he did it because he also found out that he had a rare blood group and the blood bank encouraged him to give blood and he said look you know I'm gay he said oh well are you promiscuous he said well I've only ever had three sexual partners oh well you're okay keep keep keep keep coming and so he did he kept on giving blood what he didn't realize and no one no one realized till later was the second of those three sexual contacts was an American tourist who infected him and so Ian was stuck up in Brisbane without an aid the AIDS council was embryonic at that stage they didn't have a support group or anything we actually flew him down to Melbourne over several long weekends and put him in touch with our support group and our trained counsellors and care teams and eventually he regained some sense of self-worth although he never ever left him completely and when he had to face headlines like that and not tell anybody he couldn't tell his workmates he couldn't tell his family he couldn't tell his neighbours he lived it all himself he had no support he it was a very difficult thing I know it was horrible for the families involved and for the kids who died obviously it was shocking and awful but to get that every day and more was just beyond the pile and that that's his court panel that I made for him after he died he died three years later these are some of the my first real dose of media hysteria and thank you to Robert French and others for providing some of these these headlines for me for this presentation that one on the left there the Sony Telegraph AIDS sweeps the nation but that stage there'd be nine people die of AIDS but that was a sort of hyperbole that came because you had sex and you had drugs and you had gay sex and you had blood so everybody of course was absolutely you know fraught with tension and nerves and anger and anxiety and horror about this terrible disease Joe Bealke-Petersen Dio Joe decided it was all the ALP's fault they'd cozy up the homosexuals and that causes disease and he was going to stop it Darwin as usual does what Darwin does best has debates about how to exterminate gays feed them to the crocodiles and then some of these just some of the other headlines that came through on the day we found out later from some of the senior reporters they were actually told by their senior editors to dig out stories on AIDS as much as you possibly could locally, nationally or internationally if they could find a story and put AIDS in the headline on the front page of the paper sales improved by 10 to 15 percent so there was actual financial reward if they got an AIDS story on the front page just to me is so mercenary of course Fred Nile had his bit to say but it's all in quarantine how Fred and this one here still one of my favorite cartoons Operation AIDS, Dobbin Upholster with three village people rejects on the phone seriously taking phone calls and I know it's a cartoon but that gives you an idea of the atmosphere of the time and this one down here it was really interesting too Bob Holt decided he would help out by because it was immediately overnight a drop in blood donations people were scared to give blood because they thought giving blood meant you got AIDS so he said there's been a reduction in people giving blood blood is urgently needed so can the women of Australia please step forward and donate blood and so a whole lot of women did got on them the trouble was a number of their husbands had to ring up the blood bank and say you better dispose of my wife's blood she doesn't know I'm bisexual and that raised another whole nest of problems and difficulties but for every action there's a reaction violence increased and this sort of stuff here from this Brisbane paper donor walks free how dare he escape Scott free this terrible human being who's done this vile thing that's a sort of that's that you can I don't know if you can imagine the atmosphere in his workplace or the atmosphere in his neighborhood knowing that he was the one though I'm talking about and though I'm talking about hoping that he died and committed suicide and it was it was a very tough time for a lot of people a bit of humour this is one of my former workmates Ian Goller and the reason I put this photo in is not only because I love Ian he was a lovely man but the headline on the back back of the room when Lindy Chamberlain went into Darwin Jail she had to have a blood test for AIDS and that became a headline story so anything to do with age anything at all became grist for the milk for for the for the media when you have media history like that you have fear you have panic you have discrimination I could talk about any one of those various examples of where there was discrimination and panic but I just want to quote one and that's from the the funeral home the fourth bottom dot point this is from a mortuary worker in 1984 I was in the funeral business and we were all very unsure how to handle the deceased body I and our foreman volunteered to collect the first remains that the doctor had signed off where the cause of death was AIDS I believe the male caught the disease from a blood transfusion we all dressed in protective gear that we could find including respirators we placed the body into a vacuum sealed body bag I think we used two then the body was placed into a lead coffin and it sealed airtight closed then the remains were placed into a solid wooden coffin not the particle board like we use today with the glue lead glued on and one way screws used the remains were then taken back to our morgue placed into refrigeration which we set to its coldest setting the vehicle was steam cleaned inside and out all personal protection equipment we had was incinerated I lived above the funeral home and went upstairs running a bath with the hottest water I could stand I used two bottles of disinfectant and sat in it till the water cooled and I came out looking like a prune being married me and my wife agreed to sleep separately for six weeks until I could be blood tested and cleared twice we were so paranoid we had no physical contact but this from this time on using we only used disposable eating utensils washing only after I disinfected all surfaces toileting was similar I wore disposable gloves at all times during this period being socially responsible my colleague and myself did not venture into a public domain even fellow colleagues were very wary of us and kept their distance no one knew very much about the terrible new disease and it was a very difficult time personally for me and for the industry as a whole now looking back on it seems ridiculous now with what we know about HIV but consider the indignity and the way that family was treated and the way that person was treated and the way this poor bugger who didn't know any better had to deal with that issue as it arose when Neil set up the national advisory committee in November 1984 there was a turf war as you expect the age task force thought that they were running the show and suddenly along comes this group run by a woman who publishes Women's Day who's telling the public all about AIDS which was their job it was a classic contest between two models of public health the old style public health deals with you deal with the system of you test everybody you identify who's positive or who's infected you quarantine those people who are infected you treat them until they're better then you release them and that was a model we classically used throughout history to deal with infectious diseases and that's what the model that most doctors are trained in and most doctors are comfortable with we in that case said no you need to collect because the population is not easily identifiable you need to have collaboration you need to have people trust to come forward voluntarily to be involved you need to have their support and we need to help them to organize to spread their own messages in their own language in their own style and idiom so the message can get through accurately that whole notion of being sex positive and promoting harm minimization amongst injecting drug users rather than saying just don't do drugs led to a head-on clash between the two organizations and that clash manifested itself in some minutes which I've been reading today in the archives where Professor Pennington says one thing and the artist says something completely different five minutes later or more often it led to media leaks and the whole notion of a gay mafia running knackage and therefore running the age agenda became a very popular discourse in modern Australian life the idea that there's only two of us on a committee of 14 headed by a woman as strong as Ida Butler's that we could somehow hypnotize them to do our evil way just didn't people didn't seem to understand that that was actually not possible at all finally the health ministers had enough of the infighting in 1988 both bodies were merged into one David Pennington went off to become the vice chancellor at Melbourne University and Ida retired and is now doing other media things which you all know about every morning if you watch Channel 10 the other important date is April 5, 1985 this is when the antibody test became available this was the first time doctors had something they could use in the epidemic the first time that the medical profession had a tool and it was actually something that created an enormous amount of division an enormous amount of controversy that lasted for years and once again there was a split between Melbourne and Sydney in the gay communities over this testing I don't want to simplify it too much but in Sydney there was a general push to get tested and because knowledge was power in Melbourne we said it doesn't matter what your status is you still got to practice safe sex so why bother if you get tested and the information leaks then you're subject to all sorts of discrimination the best thing you can do is practice safe sex and that argument went on for a while well a long while there were some populations who demanded the light to test the army for example wanted to test all its military because they do battlefield transfusions and so they wanted to be sure that their blood was safe and unfortunately they couldn't win that argument because the army is a law into itself surgical patients some doctors surgeons wanted all patients to be tested so we said okay but only if surgeons get tested as well and the surgeon said no if I test up positive I'll never work again got it in one mate well done pregnant women was another group prisoners was another group immigrants hold a population one of the gems and one of the pleasures of working in the archives is you find little nuggets and one of them is a letter dated November 85 from one never ran Premier of New South Wales to his Chief Health Officer saying can you please tell me why I can't test everybody in the population for HIV AIDS and to his credit David Pinnickton replied via Chief Health Officer a four page forensic analysis of why it was a stupid idea not only the cost the testing technology the interruption to try the interruption to marriages to tourism to you wouldn't you have to test everybody who was sexually active and using drugs you couldn't use the electoral role but there's not everybody's on the electoral role you have to get people to test once and then have them do nothing for three months and then test them again to be sure you have a whole ride of false but you know it went on for four pages and by the end of it was it was just clear that was you're a stupid man don't be so you know the tone of the word is just beautiful and there's a copy here in the archives and it's just wonderful to be able to record it this did become one of the one of the really big argument points between the NACA AIDS and the task force the task force of course wanted to test everybody NACA AIDS said no it has to be done with full consent and confidentiality and finally we had so many leagues and so much fighting over it that Neil Blewett called a small meeting with himself, Iter, David Pennington and the self, Greg Tillett and Ron Wells from the health department we were locked in a little room here in Canberra and told that we weren't allowed to come out until we come up with an agreed set of words between us well we argued for two hours and David dug his heels in and said to we and then finally Ron Wells from the health department pulled out a bit of paper like so unfully and said oh you have some words minister we think you might like and they were perfect it was just the most wonderful example of a clever bureaucrat doing his job well and that became the agreed statement and that was yes testing is fine there has to be confidential it has to be with informed consent and it has to be proper counselling pre and post the next important date is this one there this is where I have to try and use my technology here the arrival of the green reaper it was obvious to us that some of us were living in a world of AIDS but a lot of the community only saw the headlines and only knew a bit about it there needed to be a national conversation there needed to be a way of starting a lot of people to talk about this disease for the first time so what we did was this ad AIDS virus now I imagine that most of you will have remembered that ad it's still the single most powerful memory of AIDS in Australia it only ran on TV for three weeks but it embedded itself in people's consciousness as the answer or the response to AIDS in hindsight I was on that gauge we didn't see it until the day it was released we saw it the same time we in videos did the telephone lines that night exploded and the next day we were swamped with calls for speaking engagements and it was backed up with newspaper ads and booklets were distributed to every household so the conversation voluntarily started and it probably never stopped since but it was hard in hindsight now people have said that it demonised people with AIDS and that's true but you have to understand that at that stage people with AIDS weren't an organised organisation they were they were they'd never voice and that's not that that's a real excuse I was more upset about the opening line at first it was only homosexuals and IV drug users who were getting killed like as if we could die and it didn't matter but the fact that it was a risk of spreading to the general community was one of the issues that became the real touch point a woman called Elizabeth Reed was a Gough Whitlam's first was Gough Whitlam's women's adviser and one of the most amazing people I've ever met in my life she was a after she worked for Gough Whitlam for a few years she went off to work in the United Nations in in development and in Africa she met a guy called Bill Pruitt and they got married Bill unfortunately was a hemophiliac and he received a bad blood donation and he died he was one of the first person to die in Canberra in the when was it I think it was the winter of 86 Elizabeth was asked a year later to get together and help write the first national AIDS strategy and I think it was a very important document I I've just read it recently and the guiding principles of that document are still valid today the reason why I put this slide in and why it's so important is we had a national strategy on AIDS in 1989 America had their first national strategy in 2010 under President Obama to to to understand the significance of hundreds of thousands of people had to die first before they realized it was an important issue compared to what we managed to do proactively here in Australia is I think a very important statement to make on Australia's behalf we had significant political support and once again I apologize for the photographs I don't just want to show that Neil Blewett was not afraid to meet game in and you know had dialogue and was terrifically helpful IDA was of course always available and an old mate of mine the Premier of Victoria Joan Kerner God bless her stood and came up and became one of our greatest advocates as well when you compare this with some of the rubbish that was happening in America where there were senators like Jesse Helms who attached a rider to the foreign aid budget to say they weren't allowed to spend money on condoms or that school education had to be based on notions of abstinence only that whole program in America was warped because of the political priorities of that right-wing government and operatives but I can't say that everything was peachy in Australia there was always Queensland there was always Queensland so when people said here that there's that we had a great world leaders just a reminder of Queensland you had a Premier up there who said literally I'm against the dirty and despicable acts these people carry out you can't get any beast or animal that's so deprived to carry on the way they do you know he refused he had got Cabinet to do everything they possibly could to stop the work of the AIDS Council it wasn't a matter of not giving them any money they wouldn't answer letters they wouldn't hold delegations there was absolute total hostile response to the AIDS Council up there and a total belief in all they needed to do was test everybody and do contact tracing and that solved all the problems trouble is while I'm promoting testing I'm the Queensland Police we're conducting raids on abortion clinics and seizing patient files 20,000 women's names were grabbed up by the police and for the next six months no one came forward for an antibody test they knew for a while what would happen eventually it got to the stage where no one was able to get money to the AIDS Council because the government wouldn't fund them so Neil Blewett came up with a wonderful clever little idea he found a woman by the name of Sister Angela Mary who's a little nun about this big still alive 90 years old sweet thing who ran the Marta Hospital in Brisbane and she gave the AIDS Council an old building next door an old house and that's where the staff were housed and every Thursday afternoon she'd go down to the Marta Hospital payroll office and literally get a brown paper bag and stuff it full of paper of coin and notes walk across the street of Stanley Street plonk it on the table and that's how the staff got paid she was a bag lady for the AIDS Council a nun a little 90-year-old nun because she was one of the few people who'd stand up to Joby Occupatorson and to her eternal credit if you want a saint in Australia she's yet as far as I'm concerned I know I'm running out of time I'm sorry I've been rattling one I won't go into much more of that only to say that it was a terrible situation up until 1990 when Wayne Goss came in and they finally opened up the gates and so they talked to people I've talked a lot about game in I also need to talk about some other populations as well injecting drug use the notion of sharing needles was widespread in a population that used drugs intravenously and I had a preconception in my mind that this group would not want to help themselves and other too chaotic and it was going to be a wasted effort but people like Alex Wodak and Jack Wallace and a lot of people that Julie knows and Sydney and others they helped set up a first needle what they called a needle exchange out of St. Vincent's Hospital in Darlinghurst now it was called a needle exchange because that was more palatable than what it really was which was a needle availability service if you wanted a needle you got one but we had to sell it as a needle exchange because the notion of giving and receiving a transaction seemed to be more palatable to the politicians from the very early beginnings where only a few hundred needles were distributed we now give out something like 35 million needles a year in Australia and those groups are organised they have their own groups they have their own place at the policy table and they are now pushing for other issues to do with safer drug use and the interesting thing for me is the people who staff those needle availability programs are often the first health worker that the needle user meets is actually sympathetic and not angry at them and the relationships that are built up in that interaction sometimes in many cases lead off to treatment and rehab so this whole notion that facilitating drug use it's counterintuitive but it's actually helping to reduce drug use people can understand it but Alex from Sydney has been a longstanding supporter and once again I'm using the word hero but one of the people who stood up for harm minimisation for years and years and continues to do so Indigenous education has always been a worry given the poor health outcomes and some of the cultural issues it was very difficult in the early days to even talk about sex with some of the Aboriginal populations because you had men's business and women's business and the answer once again came down to empowerment of the communities themselves and they've used their art and their local connections to develop some of the most effective campaigns and that condo man for example has gone global used all over the world Next one, sex workers an important type of population and one that I think is much underrated in terms of the work that they did not only did a lot of sex workers teach a lot of game in how to use condoms in actual workshops this is how you do it but they ran some of the most efficient organisations I've ever dealt with as an health department bureaucrat if there was going to be a sex worker organisation meeting from three to five at ten minutes to five you had to start winding up because they were efficient and they had to get things done they were also very creative they had to think all the ugly mugs list for women on the street and men on the street who were working violent clients are one of the greatest dangers they face so the sex workers actually on a shoestring on the smell of an audio rag used to put out a runny old sheet every fortnight all of your work listing the car registration numbers and the descriptions of these mongrels who are going around being physically violent or raping sex workers and that sense of empowerment and collective work built the organisation and made it stronger and I just want to quite quickly somebody who's also in the room who I respect enormously Australian research demonstrates that decriminalisation is the best practice approach to the sex industry and the prevention of HIV and STIs decriminalisation also grants agency to sex workers and allows for the realisation of the human legal and industrial rights in many parts of the world sex works remains criminalised and together with poor regulatory responses and or ideology that seeks to abolish sex work and criminalised clients subjugate such rights protecting rights and creating safety for Australian sex workers has been in large part due to sex workers themselves and their ability to act as safe sex advocates to appear based health promotion to negotiate with sex business owners and clients and to inform and participate in the development of government policy never a true word is spoken thank you Julie now another population group that needs some attention and I don't know the answer to this one yet and I don't think anybody does it's prisons a lot of unsafe behaviour goes on in prisons some of it consensual some of it non consensual I've been told that condoms aren't allowed to be distributed because they can be made into weapons although only if you put something hard inside them which mind boggles but there has been a tragic case of a New South Wales prison officer who was stabbed with a blood filled needle and he died of AIDS and that has that event has meant that prisoners and prison officers are now diametrically opposed whatever improves the rights of prisoners is opposed by prison officers whatever improves the rights of prison officers is opposed by the prisoners and I don't know how to break that Gordian knot but something needs to be done because those places cannot become incubators and not only HIV but now for hepatitis and other illnesses in 1987 a new drug arrived it wasn't actually a new drug it was an old drug that they found and rediscovered and Burroughs Welcome had the audacity to charge 10,000 bucks per person to use this thing called AZT it was the first drug that had any hope of showing any real improvement it didn't cure immune suppression but it helped alleviate and postpone some of the worst elements of the disease originally a strict quota and people were given a dose what happened was a lot of people who got on AZT actually halved their dose and gave the other half to a friend who wasn't in the quota and as it turned out luckily they actually saved their own lives because they found out in a couple of years time that the dose was double what they needed people were actually getting poisoned with too much AZT so the people who the gorillas who actually went in and halved their dose were actually saving their own life plus the life of somebody else but I think it's interesting to note that it was an old cancer drug that was being recycled but they were charging 10,000 bucks a pop the next most the next important event was in August 1988 the AIDS conference in Hobart that some people in the room will never forget for a number of reasons one was an incendiary speech from Wilson Tuckie who was a shadow health minister at the time who told us all that we'd been too lucky and you know we'd been too successful and when he was minister he was in a cut funding and we shouldn't be ashamed of ourselves and we let people give us the disease and yada yada yada and it was just people were in uproar but after he spoke Michael Kirby got up and spoke and calmed the crowd down and Wilson Tuckie was sacked from his job three days later which was nice but the most enduring memory of that day was in the final plenary when Chris Carter and a couple of other folks organized for all the people with AIDS and HIV to march onto the stage and over 100 people walked up on stage and many of them we didn't know were infected or sick many of them were our friends and suddenly they all were and there were tears on stage there were tears in the audience but it was in the emergence of the people with AIDS themselves and from that moment on we had one of the most powerful voices for advocacy that you could possibly imagine they demanded and they got a place around the table they said don't do research it doesn't affect us do this research this is what we need to know about we don't want to know about that nonsense tell us about this tell us about nutrition tell us about how to how to survive at home tell us about psychosocial support tell us about peer support and don't talk about us talk to us and that notion of the clients or the patient group in a disease process being central to the solving of that disease was revolutionary but it is based fundamentally I believe on the women's health movement of the 70s one of the books that we read and loved was a book called Our Bodies Ourselves the whole notion of women empowering themselves in the face of their doctors this was the same thing and I think it's a really it's a critical turning point for the epidemic in Australia of course not everybody was happy the drugs weren't coming through fast enough people were angry people were still dying so I think all ACT UP was formed ACT UP first originated in New York where it was really needed because the government was negligent out here in Australia wasn't so much the government that was the problem it was the drug companies drugs weren't coming through fast enough and I've worked with a lot of politicians over the years both in both the Victorian and Commonwealth and now the Queensland Health Department and the politicians were genuinely scared of ACT UP because they were smart they were clever they were sassy they were media savvy they had a message they had their sound bites ready they had visual presentation the TV cameras lapped up and politicians would literally run if they knew that ACT UP were going to be doing something they were a very effective organisation because what it enabled them to do they were the naughty angry radicals and us we were the moderates we were the people inside in the board rooms who could say oh well actually Minister what you could do is this and it was a classic good cop bad cop routine but it also empowered people to do things and to be involved in civil disobedience which I think is something that you can never underestimate the power especially today when we've all become a bit classic I won't talk about that because time is marching on we did have a few I won't say that everybody who had HIV was an angel in training they weren't there were a couple of cases a few cases of people who had existing problems and HIV was just another complication in their life and we had to develop a whole new legal framework for dealing with people who might put others at risk um this was a very popular media narrative that all people with AIDS were like this but in my time I've only met a handful and they really had bad life they really had trouble in their life beforehand either mental health issues or drug and alcohol issues but we developed this plan this legislative approach and I have to tell you that most of these people never got past stage three a couple did but most only got to stage three so there's a whole notion of reckless people out there deliberately infecting people is a myth okay education materials as hard as we could it was really there was a real dynamic tension between getting information to the people who needed it and getting it past the government funders we found out there was a whole lot of young people young young gay men getting infected with HIV so they developed a campaign and that was the third of their workshops and people thought it was great they developed this poster then they wanted to place it in the newspaper in the magazine that was read by more young gay men than anyone else and I bet you can't tell me what that magazine is surprise me TV week apparently young gay men like reading about soap operas who knew so the AIDS Council tried to place that ad in TV week TV week said no the AIDS Council appealed to the advertising standards tribunal the advertising standards tribunal said no that's obscene you're not to show it in any mainstream magazine it's banned and blah blah blah and of course that got media attention and it went all over the country and we got miles of free publicity and up to 250 young gay men volunteered to join the AIDS Council and helped in their peer education outreach so it actually backfired but it was an interesting example of how an image can be used depending on how it's perceived by the press of course ACT UP had their own version because the shadow health minister at the time won by the name of Murray Tien railed against the government and this is what ACT UP did which I think was quite creative and Murray Tien wasn't very happy now I've talked a lot about education but meanwhile people are dying in 1988 223 people died and 89 400 people died 90 515 people died 91 585 people died 92 597 people died 93 693 people died 94 738 people died 95 654 people died and I just want to show we had a lot of grief and loss but this is the best image I can use to try and sum up what that felt like this was a double page spread put out by the Sydney Star Observer on World AIDS Day 1996 and you can't read the names here but they're all individual names of people who had obituaries in the gay press during those years it starts off down here in 1984 and 85 86 it grows a bit 89 it takes off but look over here in 94 95 there were dozens of deaths just dozens and people who worked in the field had an enormous load of guilt and grief and fear you had to work out which funeral you went to each week and you couldn't go to every funeral all the time it was just too much and all those people there were all people friends and that's only Sydney they had 70% of the cases nationally but that similar things are happening in Melbourne and later in Brisbane and Adelaide so we had to develop ways of dealing with grief and loss one of them was the quilt another one was candlelight vigils another one was art that's mother inferior of the Sisters Perpetual Indulgence we're enacting the Pieter because art and grief and loss seem to come together really well and I think that but also the collective solidarity of being in the same place with other people and expressing the same feeling meant that it wasn't just usually in wartime you actually found that the people were also suffering along with you we also had real problems real issues about funerals there were funerals I went to where the biological family was at the front we were down the back bawling our eyes out and the priests who didn't know the person they were burying would talk about leukaemia or cancer and up would come the slide show the photos and bet middle of singing wing beneath my wings and I'll never hear that again and there'd be these photos of the young kid in primary school or first holocaven union and high school and riding a horse or down on the beach and then there'd be this gap and then there'd be a photo of them near death and the whole 20 years in the middle was missing the family didn't know anything about bawling you but they didn't and so we had the whole ceremonies that were used in our society to acknowledge loss and grief we were frozen out of and we had to make up our own ones and that's why that's why the candlelight vigils was so important we also had really difficult conversations with people who were dying people who wanted to die quicker use an asia became a real issue and just give me more more fame I don't want to be around anymore or this is what I want in my funeral this is what I want people who want to speak this is the music I want to have played this is what I want on my court panel help me to sew it now and there's also I think a individual and collective pdsd from that population who survived those years and when people talk about the marriage equality plebiscite I know young vulnerable kids are important but I just want to put a plug in here for my generation we've already had to prove our worth once we've already been through the hell and fire once I didn't want to have to go through all that hate again to prove that I'm equal and that my right to as an island or as anybody else's so I'm so glad that that plebiscite is hopefully dead because I think it would have stirred up a whole lot of emotional stories and issues for people who have already been through this lost once it wasn't all bad news 1996 the good news came the 11th conference in age in Vancouver a late breaking session by David Ho announced that using one drug alone wasn't the answer if you used a combination of drugs you actually saved people's lives and there was a thing called the Lazarus effect where people who are actually literally on their death beds were given the combination of drugs and quite literally gained weight quite better got off their beds and were ready to go back to work it was it was a miracle it was what we've been waiting for and it finally finally happened and that was the story on the front page of the San Francisco gay newspaper after 15 years of obituaries when that headline came out I remember I stood and cried and I know a lot of other people did too so now age is a chronic manageable condition what does that mean? it means people with HIV age now if they have access to the medications and have a good doctor can live a life expectancy basically the same as anybody else however we've now got people who've been on these really strong drugs for 20 years and there is some thought or some evidence of increased osteoporosis cardiovascular problems and other tumors we don't know whether that's because of the long-term infection by HIV the long-term use of the anti-retroviral drugs or just the process of aging but something's going on and it'll need to be studied why is the archives so important? the archives have given me a chance because we didn't have any electronic records in those days we didn't keep copies of things the things we had were basically faxes and drafts of materials the archives were all those things are stored when I was losing my job in Victoria at the health department I told Fabian Hutchison who was the archivist at the time if you wanted them to come down from Canberra to Melbourne and he could have whatever he wanted and sure enough he came down with a little mini van we locked him in the room on Friday night he drove away on Monday morning with five final cabinets full of paperwork I think it's really difficult to explain the unrelenting and complex nature of the work over 15 years just how much difficult each day was how unforgiving the work was but I don't want people to forget that history and I'm reminded of a quote from one of my favourite plays called The History Boys by Alan Bennett where he talks he says but to put something in context is a step towards saying it can be understood and then it can be explained and if it can be explained then it can be explained away but this is history distance yourselves our perspective on the past alters looking back immediately in front of us is dead ground we don't see it because we don't see it this means there's no period so remote as a recent past and one of the historians' jobs is to anticipate what our perspective of that period will be and that's what I'm finding with HIV AIDS it's real and it's close it's too close still to actually get a truthful well it's truthful for me but whether it's truthful for everybody I don't know most people today in Australia are on treatments when they get on treatments they become less infectious their viral load drops and what we want to do eventually is get people 90% of people who at risk of HIV to be tested 90% of people who are positive to go on to anti-retroviral drugs and 90% of those people to have their viral load lower if we can do that then we can probably stop this epidemic that's great for a rich white first world country like Australia but we've got to look around the world as well and I'll talk about the drug Trivada but time is running out I won't spend time on that now now I don't know if you could read those numbers there there are 10,000 Australians who've died of AIDS 27,000 who's 90% HIV positive and the number that drives me spare there are still about 1,000 new infections a year but worldwide there have been 35 million deaths 37 million people on HIV positive and about 70 million on treatments so there's still a gap and the epidemic is still breaking out all over the world there are a million Russians who are now infected with HIV because Vladimir Putin doesn't believe in methadone or needle exchange the fastest population of US infections are young African American men in the southern states the African population is still under great stress 20 countries around the world account for 80% of all people living with AIDS this is one quote that's guided me for 30 years because what I've seen has been unconditional love I've seen in the care teams I've seen it in the people who work day and night in outreach I've seen it in the researchers who give up and work so hard I've seen it in the nurses and the doctors it's unconditional love and that's the one thing that this is all while this is a bit grim and terrible and we've been through some awful times the spirit of the people who have been involved has been absolutely remarkable I wanted to show you some faces of people who've gone because all these people are important to me and these are only some of the ones I wanted to tell I want to tell you all the stories but I will say that there's this bloke here a blind hobdate worked for the age council in 1985 he stood up against the New South Wales police and the doctors who wanted to close down Mardi Gras and he stood his ground and he fought tooth and nail so that Mardi Gras went ahead and it did and it was a great occasion it became a great educational experience this bloke here Lee Holloway you probably don't know him but he was in charge of Friends of the Earth and he actually ran the campaign that saved the damning of the Franklin River in Tasmania this is Andrew Morgan a lovely cheeky, snarly, cranky person with AIDS who was ferocious advocate and a fantastically funny human being Brian McGahn an old political commemore of mine who was a Sydney City councillor who died recently so on this page is housemates Kim, Robert, the workmates Ian and Peter and people I got to know as a result of AIDS that's the human faces that's the name that's just who we're talking about then there's all these names these are just some other famous names and famous and non-famous I'm not going to read them all out but the one I really want to emphasise is this one here the most important names to me are the names we don't know every day there are 250 young girls in South Africa who die of this virus I'll never know their names no that's probably ever will but until their lives are safe this disease will never be stopped you can look to that list even there's music, there's art, there's sport there's politicians, there's philosophers, there's everybody it hasn't all been bad we've gained enormously we've got major advances in immunology major understandings in global health major understandings in health rights and human rights are intertwined together we've basically eliminated mother-to-child transmission globally that's a major achievement the LGBTI community has gained more credibility and social acceptance has resulted in this trial by fire that could ever have been possible I mean it's a hell of a price to pay but I don't think you could ever have the advances we've had in society if it hadn't been for people seeing people stepping up and doing what they did this is a quote from a dear man who died in 1990 Vito Russo I won't read it out because I hate people who read out power points well everybody else can just read it basically I mean I'll just catch my breath while you read it it's a very powerful beautiful quote so to get back to the original question does a green whip a win? no but the war isn't over yet there's still a long way to go thank you