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Ngā mihi, thank you, Clive and Amohia, uh, and I couldn't agree more. If there's one thing to underscore this morning, it's that communities need to be in the lead and whether that's gay and bisexual men or Māori or any key population, uh, communities know best. Uh, I'd now like to introduce our next speaker, uh, David Miller. Uh, David has supported the [00:00:30] HIV response since the 1980s, initially as a clinical psychologist where he co developed the protocols and algorithms for voluntary counselling and testing when HIV was first identified. He's worked internationally supporting the HIV response in a number of countries for the WHO, UN, Global Fund and UNAIDS. In 2010 he was tasked with reviewing the HIV services available to people living with HIV in New Zealand [00:01:00] which led to the funding of our peer support organisations. Nowadays he lives in the Banks Peninsula in the South Island, passionately supporting conservation efforts. Please welcome David. Tēnā koutou katoa. I'm David Miller. It's a privilege to have been asked to attend this event. I want to thank particularly the [00:01:30] Burnett Foundation Aotearoa for your kindness. But all of the organizations here, thank you, uh, for the invitation. You're all so important to this country, as are those who we've lost. I'm going to lightly touch on a selective short history of development of HIV AIDS and just a few heroes of our times from beyond our shores, as well as within. And I'll briefly discuss the [00:02:00] courage New Zealanders have shown and continue to show in their work. HIV in this country. I'm an AIDS dinosaur. I trained in Aotearoa, New Zealand, as a clinical psychologist, but I worked in that capacity in St. Mary's Hospital in central London. On the 9th of August, 1983, I was asked to work with a young man on our infectious diseases ward there who had [00:02:30] Neumsystis carinii pneumonia. Meeting Adrian started over 20 years of total commitment to HIV. As a clinician, then as a public health specialist in WHO and UNAIDS. I worked with people living with HIV and health practitioners all over Europe, North America, Asia, Africa and the Middle East. And as was said, um, I authored a report on HIV services in this [00:03:00] country. Goodness, 14 years ago. This, most of my work though, was in the pre treatment era of HIV, a period of intense fear, stigma, uh, and of clinical revolution. For example, in community and patient engagement, diagnostic and treatment protocols, and social license to discuss sex and death. The 1980s was also a decade of courage. [00:03:30] Courage is a vital element. in safeguarding the health of the public. Public health is like a finely woven korowai. It's composed of many threads, including vital considerations of gender, ethnicity, culture, law, education, politics, finance, innovation, technology, security, integrity, empathy, love, and courage. Courage is key because [00:04:00] the challenge in the global HIV AIDS experience has always been stigma, as we've heard. That's what made the coalesced communities at risk in the United States, in the UK, in New Zealand, Northern Europe, Africa, Asia, in fact, globally, such brave acts. Those most affected stood up. Listening to a 1985 radio interview with Bruce Burnett the [00:04:30] other day, I was struck by his extraordinary empathy and concern for patient confidentiality because of stigma surrounding AIDS. It may not always feel like it, but New Zealand community groups have changed the world very much for the better. By successfully arguing for homosexual law reform in 86, establishing the world's first state sponsored [00:05:00] national needle exchange program in 87, and decriminalizing sex work in 2003. At the very least, stigma had become delegitimized through such acts. I think of the courage of Bruce Burnett, of Mark Thomas, of I. D. Auckland, of Warren Lindbergh, of Jane Bruning, of Bruce Kilminster, and of Marama. And I [00:05:30] think of the courage of the medical teams who endorsed their work, and of the parliamentarians. I'm sorry, most of them have left now. I wanted to say something nice. Back in London in the early 80s, our hospital was the go to for AIDS treatment, mainly because we had more experience than other hospitals. Tests for HTLV 3, hands up those who know what HTLV [00:06:00] 3 is, good on you, um, it's the precursor name for HIV, were becoming available, and our clinical collective began writing about the perils of HIV, of unconsented testing and arguing often against strong medical opinion for no testing without counselling. We established the National AIDS Counselling Training Unit in London to ensure national consistency in the [00:06:30] procedures employed for voluntary counselling and testing and those protocols were adapted globally. Physicians like Tony Pinching and Ian Weller worked with advocacy and patient groups to improve their treatment protocols. The people we worked with were advising us on how we could do our job better. We published a clinical textbook, devoid of any mention of ARVs, called The Management [00:07:00] of AIDS Patients in 1986, and then a companion volume, Living with AIDS and HIV in 1987. AZT had just become experimentally available in the UK at a cost then of 24, 500 per patient per year. Around about 160, 000 New Zealand dollars per patient per year today. Senior politicians, policemen and others in England argued that such money should [00:07:30] not be wasted as AIDS was self inflicted. So 80s, political empathy for people living with HIV was a major challenge, but for two outstanding parliamentarians, Norman Fowler of the Conservative Party and Chris Smith of Labour, the first UK politician to declare his HIV positive status. In the US, Everett Koop, Surgeon General and Tony [00:08:00] Fauci of the NIH enabled the first substantive research funding for AIDS education, public education, in the 1980s against fierce political headwinds. These politicians were matched in their courage at that time by some here in New Zealand. WHO's global program on AIDS was established under Jonathan Mann in early 1986 to raise awareness, to formulate evidence based policies, to provide [00:08:30] technical and financial support to countries, to initiate relevant social, behavioral, and biomedical research, promote participation by NGOs, and and to champion the rights of those living with HIV. I'm struck by the complete relevance of that mission to the content and spirit of our National HIV Action Plan for 2023 to 30. My wife Carol and I, uh, [00:09:00] were both there in the early days of GPA, and we were learning about the desperate situation involving entire communities in Africa Asia and Eastern Europe. In the North, many courageous people stepped up. Cleve Jones in the AIDS memorial quilt, Larry Kramer forming ACT UP, Tony Grimshaw in London, and Princess Diana shaking hands with an AIDS patient. [00:09:30] AIDS in the 80s led to hitherto untried and successful engagement in, with, uh, uh, advocacy groups. For example, in ethical committees overseeing clinical trials. It was unheard of to have patient groups participating in ethical, um, committees. And policy and funding developments in clinical care and behavioural research and education. We started looking to the south. [00:10:00] The UN General Assembly debated AIDS in October 1987, the first ever disease to be discussed in that way. In 1988, the World Health Assembly in Geneva recognized and published a resolution on the vital importance of addressing AIDS discrimination and stigma. And on the 1st of December, 1988, World AIDS Day was observed for the first time, 36 [00:10:30] years ago. The 90s was a decade of testing and counselling, development of treatments and rollout. We saw the Red Ribbon Project, development of oral testing, of heart, viral load tests, neverapine, home testing kits, and many other things. We were truly now in the treatment era. In New Zealand, of course, the 90s saw the development, uh, the establishment of positive women, um, uh, [00:11:00] and of, um, Body Positive Incorporated as a national peer support organization. UNAIDS was formed under Peter Piot in 96, and in 97, it estimated that 30 million adults and children worldwide had HIV, and that each day, 16, 000 people were being newly infected. But it was still the subject of appalling, lethal, political denial and social [00:11:30] taboo. So time for more courage. I think of Kenneth Kaunda, first president of Zambia, publicly addressing the fact that family members have died of AIDS and urging mature political debate amongst his African fellow leaders. I think of Nkosi Johnson of South Africa, of Catholic Sister Maureen in Uganda, demonstrating and [00:12:00] distributing more condoms to rural populations than many governments of the day. Awa Kolsek of Nigeria, demanding that women be supported to say no to unsafe sex. Martina Clarke, the first UN GPO spokesperson. Ian Campbell and Alison Rader of the Salvation Army in Eastern Africa, demonstrating the power of shared confidentiality for security and [00:12:30] safety and support of people living with AIDS in rural and urban communities. Noreen Kaliba and Sam Kalibala and Eli Katabira forming TASO in Uganda, a laboratory for community social developments in support of people living with HIV. Fareed Abdullah from the West in Cape, openly defying denialism and offering treatments despite threats of imprisonment from his own government for doing so. [00:13:00] Zaki Ahmad and Mark Hayward of the UK. the Treatment Action Campaign. Justice Edwin Cameron of South Africa publicly disclosing his HIV status as an act of defiance against his own government and a challenge to them. And Mahinda Watsa in Delhi exhorting his vast radio audience to protect young girls from early marriage and to adopt safer sex. Ethicists like Ron Bayer Lawyers like [00:13:30] Susan Timberlake and activists like Mark Harrington have acted up. Crucially helped redefine support and accountability in HIV AIDS. At the end of the decade, WHO announced that AIDS had become the fourth biggest killer worldwide. And the number one killer in Africa. 33 million people were now living with HIV worldwide. and 14 million had died of AIDS. [00:14:00] Average life expectancy in Sub Saharan Africa fell from 62 years to 47 years as a result of AIDS. 15 years drop. Some countries had prevalence rates of 25 percent or 33 percent. And in the early 2000s, at the end of the old millennium, my former boss, Joss Perriens, told an annual AIDS conference about the unused [00:14:30] capacity of generic drugs manufacturers for making AIDS treatment at a fraction of Western prices. His presentation ultimately led to the breaking of patents on the grounds of a global health emergency. In 2001, and a massive expansion of care options, more political courage on display, President George W. Bush created PEPFAR, a multi billion dollar project, which combined with the Clinton [00:15:00] Foundation secured price reductions for HIV AIDS drugs from generic manufacturers. In, in December of that year, WHO announced its three by five initiative. to bring treatment to 3 million people by the year 2005. It took longer than that, but by 2010, 6. 5 million people in developing countries were receiving ARV [00:15:30] treatments. And now, 40 million globally are living with HIV. 86 percent of them know their status. And 31 million, that's 76%. are accessing antiretroviral medication. Sub Saharan Africa had its lowest AIDS incidence last year. But it's time to come home to Aotearoa, and I know I'm pushing the boundaries of time here. [00:16:00] The best presentation I've seen about New Zealand's early AIDS years was made by Warren Lindberg, on the 6th of July, 2015. It's online. It's a magnificent reflection. I urge you to consult it. It's a masterpiece, actually. New Zealand's legislative community and research accomplishments over 40 years have inspired and upheld beneficial public health responses in advocacy, health promotion, and [00:16:30] rights based partnerships globally. Not least in the recent removal of HIV from the barrier of being a high cost condition with an immigration policy. They've seen us continue to be a low incidence country with a really good shot of achieving zero transmission by 2030. And we've got the plan to make it happen. That plan has goals that extend and build on recommendations I made in [00:17:00] my 2010 review of services for people living with HIV in this country. I, I just want to pause because it really is a good plan. It's a really good plan. And, um, I want to thank the politicians of all parties who embraced it, and crucially, who have funded it. Keep holding the feet to the fire, though. It's a [00:17:30] superbly well done plan, but here's the second point of my talk. Please make sure we stay the course and maintain the pledged funding. Our country punches above its weight. It can win against HIV transmission while strengthening communities, deepening respect, and honouring the dignity of all involved. That includes supporting a broader suite of treatment options, and as we've always done, [00:18:00] and as we've seen, working with communities rather than on them. I recently pondered in print whether, through the tragedy and triumphs of the AIDS era, and because human beings are truly baffling, if all we had really learned was how to make a new pill. The answer of course is no. Our experience, our losses, and our public health korowai have changed the [00:18:30] world. We've had world changes here in community activism and support, in clinical medicine, and in public health promotion, in research and epidemiology, and in policy and politics. To all of you,[00:19:00] so much, David, for all of your contributions and your reflections and the contextualization, uh, and the global response. Um, it's now time for, uh, um, panel discussion of community organizations. Um, This will be facilitated by Associate Professor Peter Saxton. Uh, so I'd like to invite Peter, um, and the, and Mark and Millie and [00:19:30] Jane, uh, from the community orgs to join me, uh, on the, on the stage here. Um, our facilitator, Associate Professor Peter Saxton, is the Burnett Foundation Aotearoa, uh, Research Fellow at the University of Auckland, uh, Faculty of Medical and Health Sciences. For over 20 years, Peter has led behavioural surveillance. on rainbow communities and gay and bisexual men to support efforts towards prevention and eliminating HIV transmission in Aotearoa. Kia[00:20:00] ora Joe, um, and as our panel settles I guess, um, I mean, mōrēnā tātou, um, gosh it's been a morning of reflections and I want to Many of the sentiments shared already this morning. So, you know, it hasn't been perfect by any means, but gosh, we've got a lot to be proud of, um, in Aotearoa's HIV response. Um, and [00:20:30] that's been built on, on early, evidence based, non judgmental, uh, bipartisan, in fact, multi party, multi partisan, um, action, um, conducted in partnership with communities. Um, and it occurs to me that MPs, but in particular policy makers, um, like those in the room have supported us, um, over many years, [00:21:00] um, have played a key role in that success. Um, listening to our communities, passing laws and effective policies that have enabled our key populations to access the services they need and keep themselves safe. And in doing so. Kept UA as one of a small number of countries who have kept, um, HIV incidents low. So we have a lot to be proud of and to reflect on. Uh, but now is an opportunity [00:21:30] again to hear from our communities. So I'm delighted, um, to have on stage, uh, our community panel, uh, Joe, Jane, mark, and Millie. Um, I'm going to first ask them to briefly introduce themselves, um, and tell us, um, who their key communities are that they serve. And then we'll have a, a rapid fire, um, series of insights, um, reflecting on, um, uh, what's happening, um, what we need, um, [00:22:00] and to all to achieve the goal of elimination by 2030. So first of all, um, some brief introductions and tell us about your organization, uh, perhaps starting with Millie. Kia ora. Uh, my name's Millie. I'm from Toitūtao, Te Poutahu o Toitūtao. And Sequoia. Nā mihi Mark Fisher, Body Positive. Um, we're a support organization for people living with HIV across New Zealand. Um, thanks for organizing this. [00:22:30] Uh, kia ora. I've spoken a lot this morning. Uh, so, yeah, Joe Rich, Chief Executive, Burnett Foundation. Um, our organization, um, predominantly, you know, since the 1980s, uh, served, uh, gay and bisexual men, uh, and people living with HIV. Recently we expanded our vision to be more, uh, about supporting our wider rainbow communities. Um, so particularly in the HIV response, uh, that includes, uh, anybody who identifies as rainbow or queer. Kia ora. [00:23:00] Kia ora. Um, my name is Jane Bruning. I'm the National Coordinator for Positive Women. Um, we basically support predominantly HIV, which also includes heterosexual men. Thank you. Kia ora, panel. Gosh, that was brief, so we're, we're, um, we're heading in the right direction. Um, um, so why do community led responses matter? As we've heard, we've seen nothing short of a revolution in HIV [00:23:30] prevention and care. over many decades but we're not there yet. So in the context of biomedical prevention, in the context of all the tools that we have, what is the role of community led responses in helping us get to zero? Perhaps Jane? Yeah, I guess there's nobody knows what living like with HIV is like except for those who are living with HIV. I think that's a really important factor. People have that inner understanding [00:24:00] and are able to then you. I think they're the most valuable people in helping to do the health prevention and we have a lot of services that, that include people living with HIV who can, um, really honor the community. But it's mostly about, you know, people, we know what it's like to live with HIV and so we know what we need and we know what needs to be done. Um, yeah, from Burniep Foundation's perspective, I [00:24:30] mean, community responses, uh, Every time I talk I get this weird feedback, but anyway. Um, yeah, it's, it's so important because we, as I've said this morning, we know best. Um, we, many of our staff are from the communities that are at high risk. You know, many, uh, gay and bisexual men. Uh, we have staff living with HIV as well. We can do things that, um, Government agencies can't do. We can talk to our communities in ways that they understand that push the [00:25:00] boundaries in terms of being six positive, uh, in understanding the values and motivations of our communities. Uh, and we, we can move quicker, um, than, than government agencies, uh, because we have that inherent knowledge, uh, about what works and what makes our communities tick. Um, so it's, it's the smart investment from my perspective, uh, we can move quicker and at lower cost. with all that. Um, basically we're very nimble. Um, as a community org, we, we speak [00:25:30] to people in a language that they understand and that they trust. Um, healthcare is amazing and they do a really good job, but sometimes there's a little bit of a power dynamic and people don't feel comfortable. And so peers can help kind of engage people safely with those spaces. And we talk about stuff that other people don't want to talk about. We go into sex on site venues. We have those conversations and we push the envelope. We, we, Because we're passionate about this, we go out and we bring in things like PrEP before it's authenticated. We push in pub vaccines that you're not [00:26:00] allowed to see in public. We do all those things that need to be done because they need to be done. And that's the, and we do it for cheap. Kia ora noa. It's really important that we have community based issues, especially for Maori. I mean, it's been mentioned again this morning. Um, and Māori, Māori speakers and, and, and definitely another Māori speaker after me will say, by Māori for Māori, e tātou, nothing about [00:26:30] us without us. It is really important that we lead our way in this, in this space as well. So, ngā tātou. Sorry, can I just add something? Um, I think it's also very important to recognise that we need to work with allies as well. We can't do all of this on our own. Um, we need allies, we need people working with us as well. Kia ora leaders. Um, so as we gaze down that road to elimination by [00:27:00] 2030, we have it in our sights. What are the key challenges for the communities that you serve in your organisations? Um, perhaps starting with Mark. Um, I think the challenge is there is a, Um, A really big focus on prevention, which is really important, um, our focus is on ensuring that all people living with HIV have the right to know their status. That's our big thing is to get people diagnosed and engaged into care and supported to stay in care. Um, the challenge is [00:27:30] that once you're diagnosed, that's not the end of the road. We don't leave you at that point. We support you on that journey to stay in care. And I think that's the key message from the action plan for us, is that all people living with HIV have good quality of life, free from stigma and discrimination. Um, HIV is the virus, stigma is the disease. So we need to deal with that. You know, if we're not actually reaching our communities, we're not going to [00:28:00] reach 2030 and non transferable, non transmissions, okay, so it's really important that, um, Māori be in the space to reach Māori in rural areas. You know, aligning also to our HIV action plan. Aligning to tikanga of Toitū tāo and tikanga of te ao Māori. So, thank you. Kia [00:28:30] ora. Um, Joe, the key challenges. Um, I would say, firstly, you know, look, thinking about the population that we most work with, uh, and represent, which is gay and bisexual men. We've seen, particularly over the last eight years, that infections have declined sharply, predominantly among Pākehā and people residing in the big cities like Wellington and Auckland. So the biggest challenge is going to be making sure that those gains are [00:29:00] realised by other parts of the gay and bisexual community, including Māori, including Pasifika, including migrant MSM. Um, and I think the other one is going to be maintaining Uh, and the investment and the focus. If we continue on this trajectory that we've been on since 2016, uh, you know, we're going to get, hopefully, to a point in the next few years where, where annual diagnoses are very small, um, but we have to remember we are dealing with an infectious disease that still has no vaccine or cure and those numbers are only [00:29:30] small because communities are mobilizing every single day and engaging in behavior that keeps those numbers low. I think it will be really tempting for decision makers to go, Oh, well look at that. It's not really a problem anymore. Let's focus on something that's a more issue, more urgent problem. But if we don't maintain that focus, it's just going to bounce right back. The key challenges from our perspective is, um, that it's not, um, heterosexual men and women are not recognised as [00:30:00] risk groups. And what that does is actually put them at risk. It's more than 50 percent of people, um, heterosexual people who are diagnosed with HIV are actually diagnosed with AIDS. And often have very, um, complicated, um, Um, illnesses that are not recoverable from, too. So, our challenge is to, um, you know, as much as we support, um, the rainbow community, it's also about fighting for the voices of women, fighting for the voices of heterosexual men. And that often has been a challenge [00:30:30] over the years. Often we're missed off, missed out, um, not, and totally forgotten. So, I think that's one of the key challenges for us is to make sure people, people understand that, uh, this also affects heterosexual community. Kia ora. Um, so as we've heard this morning, we, we have, uh, an HIV action plan, and I want to acknowledge, um, all the people, um, in this room and elsewhere who've contributed, um, to getting us to that [00:31:00] place. It is rare, um, and it is important that we make the most of that opportunity. So what would each organisation like to see prioritised, uh, in the next, um, One or two years, uh, to make sure that we stay on track to meet the 2030 goals. Perhaps starting with Joe this time. Kia ora, thank you. Um, from our perspective, these two things we'd love to see prioritised in terms of, uh, government implementation, um, Work to [00:31:30] decriminalize HIV transmission so, um, that it's treated, um, within a public health framework rather than a legal, uh, framework is super important, um, as community orgs we mobilized on that work, um, we're, we're putting together a pathway, um, but what we'd really like prioritized is government agencies, um, that work because it's going to have to require a cross sector, um, commitment, uh, and, and changing the way, um, that this is handled. Um, so that doesn't [00:32:00] necessarily need money. It just needs, uh, needs support. Uh, and the other one for us is prep provision in the community. You know, over the last, um, six years or so we've seen, uh, prep make a significant difference, uh, but it is still not accessible for everyone. Um, it still requires people to jump, uh, to jump through hoops, uh, in terms of engaging, um, with clinical care, uh, and talking about, uh, their sex life, uh, with people that they don't necessarily want to be talking about it with, um, we can be doing [00:32:30] a lot more to make it accessible in community settings, uh, and in pharmacies, uh, and that is going to require, uh, some investment, uh, and, and support. Kuna. Kuna. Jane, your priority is for the next one or two years. Thank you. Yeah, I guess our main, one of our main priorities is heaps will be here all day, but um, I guess the main one we're looking for is around consistent, um, and national standards around, um, women in pregnancy and testing. Um, you know, uh, [00:33:00] we did have a, a national screening project and that was actually stopped because there were not enough women being picked up in that. But it's kind of assumed that the health sector knows that a woman should have an HIV test in her first trimester. Um, trimester, and from 2007 until last year, this, this was working. Um, but unfortunately, um, in the last year, we've had a couple of babies born with HIV. And, you know, what, uh, part of the reason of that is because we take our eye off the ball. And also And these were people [00:33:30] not living in New Zealand, they came from overseas, um, but while they were here they had antenatal care and they were not tested, um, for HIV. So that, getting a national guidelines is what we would like. At the moment we've heard that the Midwifery Council are putting together guidelines and we've heard that Auckland Hospital's putting together guidelines, neither of these two are talking to each other, none of them have talked to people living with HIV. So we've got people making Guidelines about people living with [00:34:00] HIV and having pregnancy, um, and no positive people are in that community. So, and the other thing is just a national testing. I mean, we, we really feel that testing should be part of any diagnostic process. Um, when someone's coming in and they've got something and you, you take blood for this, that and the other, also take for HIV because it's, even if it's only eliminating it, it's eliminating it. Kia ora, Millie. Your priorities for the next two years. Kia ora. [00:34:30] Um, that's a big question, especially for Māori facing Māori. Um, in that space, you know, one of the biggest priorities is for our people. Right? Um, And so we need the resources to reach our people. We need the resources to get in there to re educate, to educate, not just our people, we need to educate across the board. Because the stigma and discrimination that, that lays [00:35:00] with us is not about living with HIV, it's about just being Māori. And so we have to dig deep in those spaces. So one of the priorities for us is to ensure that our people are reached on a mana enhancing level. That their mana is kept intact. And it's, if ours is intact, then everybody's is intact. You know, what's good for Maori is good for everybody. It's simple. [00:35:30] Thank you. Go to Milly. Mark, your priorities, you can only pick a few over the next two years. I've got three. Um, so one of the big things for us is U equals U. So it hasn't really been mentioned today. If you're undetectable, you can not pass on HIV to another partner. So that's the message we want everybody to know. We want everybody to know that message. So that's why we wear these t shirts. That's why we push this message continuously. It's a big impact on stigma and self stigma. So Everybody needs to [00:36:00] be aware of that. Stigma needs to be defeated. One of the things with U equals U is that it depends on treatment, so we want access to new treatments. Um, one of the big movements overseas is moving to long acting injectables. It takes away the daily reminder of a pill reminding you of HIV. So, it's a big push towards two monthly, six monthly injections. That's the future. We don't have a cure for HIV. We won't have a cure for a long time. This is one of the tools that can make it easier for people to stay engaged in care and on treatment and undetectable. which will [00:36:30] stop hormone transmission and they stay healthy. Um, the other focus is around, um, the quality of life. So it's not just about being undetectable. Undetectable's great. It's not the be all and end all, it's about having good quality of life. Um, in the action plan, the monitoring plan, we mentioned measuring quality of life. That's an important thing. How do we know we've achieved that goal? So that all people living with HIV have good quality of life and good health. That's the target. Um, we're gonna continue to have more people getting HIV as we go forward. There is no [00:37:00] cure. We need to work on ensuring that they have, we're free of stigma. And the other piece with that there's being able to, if they are experienced stigma or discrimination, if that's in healthcare and employment or other situations, um, how does that track? How's that recorded? How do we deal with it? How do we change it? If we're, if we're, if we want them to have good quality of life, we need to know what's going on. So we need better mechanisms of actually capturing that stigma and discriminations or can be dealt with. So, our final [00:37:30] question for the panel, um, if you had one key message or barrier or challenge you'd like, uh, decision makers, policy makers, um, in the audience today to walk away with, um, what would it be? Um, perhaps we start with Jane and then go along the panel. I think the key message is not, not to take the eyes off the ball because it's very easy like we've seen in Fiji. If you're not focusing on it, it can just [00:38:00] get out of hand. And just because we've seen some of the numbers going down, it doesn't mean that it won't go up again. So we, and it doesn't mean don't fund it. We need to still keep funding. We still need to keep fighting the fight. And even if we get to zero, we still need to fight that fight to keep it at zero. Thank you. Keep the foot on the gas, um, and I, I would add, we need to fund, uh, access to testing and prevention for temporary migrants. Um, we're not going to [00:38:30] get to 2030, um, if we don't get there for everyone. I'd agree with all that. Basically we can't leave anybody behind. Um, we need to provide testing, we need to provide care. And, um, Ensure that we don't, as we try to get to 2030, we have five years to eliminate transmission, like, that's the goal. We don't have a lot of time. Now's the time to reinvest and to recommit to the action plan. It has all the steps that we need to get there. We can't stop at this point.[00:39:00] As I agree with some of my panellists, and of course, the other organisations in the sector, but for me, it's about honouring the HIV Action Plan and honouring the Te It's time to start honouring the people, so ngā mihi kia tātou, Kia ora panel, um, I couldn't agree more with everything that's being said, and [00:39:30] I think one of the key challenges that's echoed across the speakers is, as we get nearer to zero, it's going to be so important, um, to visibilise, to make, to appreciate all the hard work that's getting us to that place. And is going to be required to keep it there as well. So, um, please a big round of applause to our very focused and hardworking, uh, community leaders.[00:40:00] Got it. Thank you, Peter, and to my fellow panelists. Uh, Peter, you did something I have not been able to achieve this morning, which is keep us on time. Um, So, uh, next, uh, the next, uh, last but not least item on our agenda, um, is, uh, members of the community sharing their lived experience, uh, of living with HIV. Um, I'd like to introduce [00:40:30] Marama Mullin Tamati and Kit Harding. Marama, who's lived with HIV since 1993, founded ENA in 2003, and has worked nationally and globally with Maori, indigenous peoples. and HIV for over 30 years. She's held significant leadership roles, including chair of the International Indigenous Working Group on HIV, the International Indigenous HIV and AIDS Community, and the International Community of Women Living with HIV and [00:41:00] AIDS. Her achievements include of receiving the International Red Ribbon Award in 2016, and the Queen's Order of Merit in 2017 for her services to people living with HIV. Mardama played a pivotal role in influencing International recognition of indigenous peoples as a vulnerable key population, securing a permanent seat at the table for Indigenous Voices, a career defining achievement. She's also served as co chair of the [00:41:30] United Nations General Assembly on HIV in 2016 and was a community board member for the Global Fund to Fight AIDS, Tuberculosis and Malaria. Alongside her advocacy, she is a mother, author, and activist. Joining Marama is Kit Harding. Kit has been living with HIV since 2018. As a gay man, he was aware of HIV and he knew that a diagnosis wasn't going to be a death sentence, but he still thought he would be sick for the [00:42:00] rest of his life. Post diagnosis, Kit is living a happy and productive life, having met and bought a house with his long term partner Luke, something that, in the weeks after his diagnosis, seemed like an impossibility. He now works as the Positive Speakers Bureau Coordinator, coordinating a group of HIV positive people to share their stories of living with HIV and educating the wider community on what it means to be HIV positive today. Please [00:42:30] welcome Marama and Kit.[00:43:00] Um, I had a plan, um, but too many people have been talking about me, so I'm not gonna have that plan, . But I do want to say, and I want to welcome you, um. Because it's, it's, to me, um, this is my home kind of, this is where I'm from. I'm Ngati Awa Ki Kapiti, um, Te Atiawa Taranaki whanau. This is my home. And I welcome all of yous who are not from here to our whenua. Um, we were here two weeks ago [00:43:30] for a different kaupapa. Um, my children are in the room. We're outside here with placards. Um, I was here. having a lovely meeting with my infectious disease specialist, Dr. Graeme Mills. So, I was on a kaupapa of HIV, my whanau were on another kaupapa, Toitu Te Tiriti. Engari, that was the founding document for the mahi that um, I've been able to do over [00:44:00] the years. Moving on, I have always viewed World AIDS Day. As a time to reflect and remember those who have passed. Um, and I always, I like to, my daughter is in the room, she's standing over there with number 27 on. Um, I like to acknowledge her brother and sister who both passed away with AIDS in Papua New Guinea. Um, I stand here and I'm shaking because it's [00:44:30] been a year since a very close friend of mine passed away with AIDS in Aotearoa. What is going on? Māori are still dying of AIDS. I'm just going to put that out there as a key issue. Um, for me. And it still breaks my heart. And I'll tell you what I think it is. It's the psychosocial part of being, living with HIV. It's the [00:45:00] psychology, the mental health, the support. The fact that Māori come from, um, Traumatic generational trauma. And we're still trying to regain what we've lost as far as our language, our lands. And then add a foreign illness into it, and I'm out. Now, my great grandfather's buried not far from here. He died in the Spanish Flu at the age of 26. He'd already had five [00:45:30] children. I come from his youngest daughter, the Portiki. Um, she was my grandmother. So I have a lot of half for realizing that epidemics come and they go. In 2020, when COVID came along, um, I found out that I was very, very sick. So I'm going to be putting my [00:46:00] key issues and what was discussed on the panel, I'm going to put what I think we should be looking at. I roto te ao of people living with HIV is we're getting old, we're getting co morbidities. I stand here, I have hypertension, I have diabetes, I have, what else, I want to go through what pills I take. A lot. My doctor's in the room actually. I'd like to acknowledge Dr Nigel [00:46:30] Raymond over here, he probably knows more about what I'm on. So, As far as medications, but I'm on a lot and I've also in 2020 I had a stroke And I lost 25 percent of my brain So I'm walking around with a dead zone in my head and if anyone's a Stephen King fan The book The Dead Zone is what I'm talking about I'm a little bit witty witty, but anyway Where was I? So I was also [00:47:00] operated on and they found a large, very large sarcoma that was taken from me. It's my kotero. Yep, um, Over the whole period of lockdown and COVID, my concern wasn't so much for me, it was for other people living with HIV while another epidemic is raging through our land. Thank you. Every time I got [00:47:30] COVID, I got three times, I ended up in hospital. I don't know what it's happening with people living with HIV, 30 years plus, if they're having the same situation or not, I don't know. But for me, as a member of the community, I was totally taken out. Last year, um, it's I, this is, I'm going to laugh about this and you'll probably think it's crazy, but you know, getting HIV was a very rare thing for women in the 90s, but it happened. [00:48:00] Now I have a very rare form of cancer, which is a coma. And I'm thinking, you know, all the meetings I went to overseas, all the meetings and all the infectious disease specialists, all the researchers, All the clinicians that I met, they always talked about what could happen to us as far as comorbidities, what we have to watch out for. Well, I'm walking proof that it's happened. Um, I have stage 4 [00:48:30] cancer, and it's rare. Hello, what the hell, did I just get the wrong lottery? But in saying that, it's something to think of, because we were all guinea pigs when we started medication. All of us. We didn't know what was going to happen. I didn't think I was going to make it to 54 years old on 14th month, Christmas Eve. And I'm like, I wasn't supposed to make past 30. What do you [00:49:00] do? There's no research. There's no understanding of what happens for people living with HIV who start getting sick. And I'd like to acknowledge you, David, um, David Miller, just to skip back, back to the old days. Um, it was the national government, the last time they were here in government, and they were, had a coalition with Te Māori Pāti, Te Pāti Māori, is that the right way? [00:49:30] Um, I was able to successfully advocate through Whaea Tariana and through Nikki Kaye. And that's why I clapped a lot when she was, her name was mentioned earlier. Because they were champions for us. And they understood that communities, with people living with HIV, need to be funded. Jane, and Positive Woman, and even you, Catherine. It's so nice to see you, Catherine. And Cindy Fages. And, and I am [00:50:00] so proud. We're, we're, we're smart. Sorry, I'm so proud to see your t shirt. I'm so proud to see that, you know, you guys are still working so hard. It is a hard job, but we have to get in the realities of it. We're getting older, we're getting sick. How are we going to protect our mokopuna? How are we going to protect our whakapapa? Um, we had the report done and, I actually thought the Cordial, [00:50:30] Cordial today was going to be around the report, but I'm glad to hear it wasn't. But it is something that I truly believe in is that the communities, even at a global level, um, I would attend global fund meetings and being a room full of scientists, epidemiologists, clinicians, you name it. And they wouldn't grasp the importance of that. of communities within the world or realm of HIV AIDS and how important [00:51:00] it was. And I would stand there and argue and argue and argue until they finally understood. And these are people, I was in Thailand at the time, and these are people now who have changed their views. There are people out there that are changing their views because of community groups, because of Aotearoa. And everything that we stand for, every human meeting I ever attended, we were, people talk about us like we were the greatest thing, and we are, but why [00:51:30] are Māori still dying of AIDS? I have to look at it through that lens. I look at it through that lens because I'm, I don't know how many generations, I'm probably about six or seven generation of activism in my whānau. Right at pre treaty signing. Back to 1880, and our family constantly being activists. Every march that went on in the 70s and 80s, I was there. [00:52:00] Because my parents were. And I understand it's their activism and what's happened that has created these communities. We have communities because of activism. We have communities because people put their head out the door and on the line. to bring it up. I was hoping the ministers would still be here, so I'm a little bit hoar, because I'll still go and say it to their face anyway, but they cannot stop anything with you [00:52:30] guys as a community. There's four community groups are here. We are so lucky to have them. So many of the countries I've been to, we're lucky to have one. I'm ready to sit down and talk now. And my daughter's being my nurse at the moment. Um, but I'm very proud of her. I'm not going to sing because I'm losing my voice. And um, I'd like to acknowledge [00:53:00] Millie. I'm only here because Millie asked me to be here. And Millie represented us at the Indigenous Pre Conference, the AIDS conference in Germany, in Munich. And I was so proud of that day, because this kaupapa, you cannot get, um, you have to take breaks from it. It, it's a, you need to have that, um, what do they call them? Ngaire used to tell me all the time, [00:53:30] succession plan. We need to have those succession plans. And I, it's just brilliant that someone came forward as strong as I am. And it's, it's out there and not afraid. So, tēnē te mihi nui ki a koe, ki tō mahi, ki tō awhinatanga, inga wā katoa. Uh, well, I'm also taking a toast, but I'm not. But yeah, why don't we raise our glasses, huh? [00:54:00] Yeah, yeah, Rightio, I'm suddenly nervous, but it's okay. Um, so I'm lucky last, which is standing between you and the rest of your day. Um, but I'd first of all like to thank everyone who organized today and for giving, offering me the privilege to share a bit about my story of living with HIV. [00:54:30] Um, I'm going to share with you a sort of brief overview of those first weeks and months after my diagnosis in 2018. Um, it'd be pretty safe to say that that was probably the worst, or definitely the worst weeks of my entire life. Um, my rational brain knew that I would be, um, you know, I'd be healthy, I'd live a full and healthy life. But the trauma of that diagnosis was deep seated and, um, really took, uh, deep effect on my self worth, [00:55:00] um, and how I viewed myself. I felt dirty, I felt ashamed, and I felt worthless that I put myself in a position of acquiring HIV. In my mind, I thought I would never have an intimate relationship again. I'd never find a partner who would accept me. I would never be able to have sex again, um, and that is what I deserved. That's how I felt in those first few weeks after diagnosis. Um, for the next two years, I took my medication and thankfully achieved an undetectable viral load within the first three months. [00:55:30] Um, Um, and every medical professional I spoke to said that I was going to be fine and just to get on with my life. So I decided to ignore those, um, feelings of trauma that I'd experienced and just push through. Um, and we all know how men in New Zealand do when they do those things. Um, so after a bit of a two year period, uh, where I worked and worked and worked, um, I, I hit a wall, I, um, had a mental health breakdown in my life and I couldn't, I couldn't [00:56:00] function. Um, And I was forced to deal with that trauma of my diagnosis, forced to deal with the trauma of what put me there in that situation in the first place. Um, I found support through my employer and ultimately through the wider HIV community. Um, I, I live in Nelson, um, which is, you know, a smaller provincial town, and I found it really quite hard to access the, um, or find a connection to the HIV community. And thankfully in 2022, I was [00:56:30] Uh, working for Nelson Bayes Primary Health and I came across the lovely Jane at an event and she has been my link into, um, the HIV community and I'm extremely grateful to Jane and also for being a great boss at the PSB. So thank you Jane. Ha ha. Um, so I guess the message that I want to deliver, or the summary of what I want to deliver today is don't underestimate the impact of an HIV diagnosis. Yes, we all understand that medication is hugely effective and has meant that [00:57:00] people can live full and happy lives. But the trauma and the self stigma that HIV diagnosis can set off or enhance is all too real. Um, and yeah, that's me, so thank you very much. And yeah, thanks. Kia ora, uh, thank you so much Marama, uh, and Kit, uh, for sharing your [00:57:30] personal experiences. It is people living with and affected by HIV that is the reason that we're all here today. Uh, and so I really value, and I'm sure everyone does, um, hearing, um, hearing from you. So, I want to thank all of you as well for your participation this morning. Um, I've really enjoyed the conversations. I'm sure you have too. I hope you come away today, uh, with a renewed commitment, uh, and focus. Uh, particularly towards those 20, 30 [00:58:00] goals in the action plan. Uh, no new transmissions. Uh, and people living with HIV, uh, living healthy lives free from stigma and discrimination. I also want to thank all of our speakers, um, and the politicians who are no longer with us, um, but really appreciated their time. I know it's, apparently it's scrutiny week, uh, which is a very busy week in Parliament. Um, and I also want to thank, uh, those that organized today, uh, particular mention to Brooke. Where's Brooke? [00:58:30] Uh, Brooke put a lot of hard work into this, uh, and has organised nearly every aspect, uh, and also, uh, our partner HIV organisations. I particularly want to acknowledge Mark, whose idea this was, uh, many years ago. It took us a long time, uh, to actually get there. Um, but, um, it feels like now is the right time. Uh, so thank you all. Uh, I, and I was at this point, uh, going to hand over, uh, Uh, to [00:59:00] Nate, uh, to close us with the Kaia, but, uh, Nate is long gone, so, uh, I'm going to do that.
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