Vic Perri's Candlelight speech, 18 May 2025

"And I’d like to begin by asking, why do we need to acknowledge International AIDS Candlelight Memorial or even World AIDS Day for that matter?

Well, the simple but important reason is to remember and honour those close to us who we have lost to HIV & AIDS. It’s also to recognise those who have dedicated their lives to helping people living with and affected by HIV. They were partners, friends, family, acquaintances and even work colleagues. Today is a day where we reflect and share their stories. With all the wonderful advances in the science that has enabled us to treat HIV, the medical services, the laws that have been introduced to help protect us, the many programs and allied services to help make our lives easier, it’s moments like today, that we remember the people that were impacted by the epidemic.

I'm 63 years and I was diagnosed in 1987. I was given 2 years to live. 38 years later, I'm still here. While many have passed away over the years, my story of course is not unique. There are many others still here. I consider myself lucky however, having lived with relatively good health for all that time and I've recently just retired too. It's been a few months and for me life is just cruising along nicely. I’m grateful for it though. However, I do sometimes think about the many of us who haven’t been so lucky.

Australia’s approach to the HIV epidemic has long been considered by other countries as an almost textbook example to follow. And what was this approach? It was all about partnership. A partnership that included the effected community that knew how to provide the education and support to its’ own. A health system that provided the medical services to help us monitor how HIV is affecting us and to deal whatever medical issues we need to deal with. Research, both science and social that aimed to understand how HIV not only affected our bodies but our minds and behaviours as well. And finally, a government that provided the funds for the wheels to turn. What has driven this partnership is the good faith and spirit shown by these partners towards each other. It’s the willingness and commitment to help others in need.

I am concerned however. I'm concerned that with all the advances we've made in dealing with the HIV epidemic, we are about to hit some real bumps.

I’m concerned to see a government literally smashing an incredibly important program that has supported people in both the prevention and treatment of HIV.

I’m talking about the PEPFAR. The U.S. President's Emergency Plan for AIDS Relief. This was a Unites States initiative developed in 2003 by George W Bush to combat HIV and AIDS. Since then, the U.S. had invested around $120 billion, saving around 25 million lives and preventing millions of infections in over 50 countries. 

What will happen now that this fund has been paused and who knows as it may even be terminated?

According to Winnie Byanyima, Executive Director of UNAIDS, and I’m paraphrasing here, “If the US assistance for HIV is not restored after the pause and it is not replaced by other funding (and just to note that we have not heard of other governments pledging to fill the gap), there will be, in next few years, an additional 6.3 million AIDS-related deaths."

New modelling from the Burnet Institute in Melbourne, published recently in The Lancet, warns that international funding cuts for HIV assistance could lead to 10.75 million new HIV infections and 2.93 million HIV related deaths by 2030. Co-author Dr Debra Brinnk said, “Decades of progress to prevent and treat HIV could be unravelled.” The study used a mathematical model of data from 26 countries to produce these estimates.

So, what does this mean? To put it simply, if the viral load of so many individuals with HIV increases due to the ceasing of access to effective treatments, community viral load increases, particularly if no other prevention measures are in place in these jurisdictions whether it be education around behaviours or biomedical interventions such as PrEP, etc., the result is large scale increased HIV transmission. It's inevitable. And this problem won’t be just limited to the countries where the funding ceases but it will be a global issue. As we know, HIV knows no borders.

Of course, this isn’t just about numbers. If HIV transmission spikes, you can bet that another issue will have a renewed focus that we have to deal with. STIGMA. In a few years time, we may very well see the headline, "HIV surges in Africa and Asia." Followed by "After years of decline, HIV increases again in Australia" Well, firstly, that doesn't help our vision of 'Ending HIV' does it. Not that I have been a fan of that slogan anyway but that’s another conversation which I am willing to have by the way. So importantly, transmission isn't the only concern. For those already living with HIV, HIV stigma will increase as people will again blame us for being a part of this reemerging problem. Will stigma yet again influence U.S. immigration and tourism policy for example. Will the U.S., again, decide to ban people with HIV from entering their country on the misguided belief that it needs to do this in order to limit HIV from being spread across the country? The current U.S. administration certainly suggests this. In fact, it’s not that difficult to have the impression that the U.S. government is already doing this. Don't let logic or the facts get in the way of feeling better or by operating under the guise of “Oh, we’re just protecting ourselves.” while you’re finding someone else to blame. That's human nature. Will other countries follow this lead?   

Another headline has made me even more personally uncomfortable. "Big pharma's plea to Trump to punish Australia for cheaper medicines." Apparently, drug companies are not happy about being forced to negotiate deals with the our federal government so medicines can be cheaper in Australia. And listen to the language being used. “Punish Australia” I immediately thought of a nightmare scenario of having to start paying for the true cost for my antivirals. I‘d be up for around $1,500 a month. I can’t decide to simply stop taking them. They are literally saving my life. We are reassured by the re allected government that the Pharmaceuticals Benefit Scheme will be protected. And I feel confident that our partners will do what they can to make sure it happens. But I’m still anxious about the simple fact that it has even been brought up and we’re even having this discussion.

Again, this isn’t just about access or the cost of treatments. This is also about stigma. For many of us now, this is the number one ongoing concern. These kinds of conversations do nothing to help address this. Think about it. Who are people going to blame when the transmission rates rise again. How many people in the wider community know that tax payers money is being spent on HIV treatments for people with HIV. A virus that most people got through having a very natural activity such as sex. That in itself carries stigma with some people. Many people without the facts or background knowledge and without any compassion and following human nature, will find it easy to simply turn against people with HIV. And if we think that stigma will only effect people in certain countries, the countries being affected by these funding cuts. Nope, just like HIV, STIGMA knows no borders.

So, what does all that mean. Well, we'll have to be even more vigilant in how we deal with the epidemic. We'll have to work even harder and smarter to minimise the impact of a potential increase in not only HIV transmission but the stigma and the potential discrimination arising from it.

Am I optimistic? Absolutely. We can do this. We've done it before and we can do it again. There are more people with knowledge around HIV than ever before. We have a younger generation with more compassion and more understanding and acceptance of the diversity in society today. We have the prevention tools such as PreP and ‘Undetectable Viral Load’ to help us now. We still have a partnership which was the foundation of how we dealt with the epidemic in the early days and it can continue to be the foundation today. While there has been many changes in many ways over the years, those partnerships still exist. We still have a government committed to funding even if reduced. We still have big pharma developing new drugs and new modalities to deliver those drugs as well providing funding that so many projects can continue to be delivered by HIV organisations around the country. We have committed people in science, medicine as well as the many allied services for people with HIV. But we also must support the people in those countries directly affected by those funding cuts. But I optimistic.

It’s 2025. Over 40 years since the beginning of the epidemic. While we have done well here in Australia, we can see how quickly the winds can change as we are seeing in the U.S. That’s why it is important that we remain vigilant and keep fighting. We can do it. Not just for ourselves, who are still here today but also for those who are not. If we are to truly honour the past, we need to continue the fight against stigma and the actions that feed it. Not just for ourselves but for the many before us who lived and worked to get us to the generally privileged situation that we experience today. For those people, we are here today, remembering and honouring. And this is why it’s so important that our community and not just the organisations such as Meridan but you, the individual in the audience. It started as a partnership and must continue as a partnership. We’ll only reap the benefits if we all pull together. And we can. And together we must continue to organise and value events such as the International AIDS Candlelight Memorial.

Thank you."