I wouldn’t be HIV-positive if PrEP was available in Australia: Dean Beck

I wouldn’t be HIV-positive if PrEP was available in Australia: Dean Beck
Image: Dean Beck is a presenter at JOY 94.9. (Photo: Dean Arcuri; supplied image)

“I’M a little nervous, but I think it’s important advocacy work,” Dean Beck said.

“I knew that there would be a time and a place when it was right for me to step forward, and I think this is it.”

Beck was recently diagnosed HIV-positive. Not long after receiving the news, he approached the Victorian AIDS Council (VAC) about doing something with his experience — he wanted to use it to advocate for wider access to PrEP, pre-exposure prophylaxis for HIV.

Growing out of that conversation was a video series (scroll down to watch) featuring Beck and a number of other high-profile HIV-positive people calling on governments, drug companies and health bodies to make PrEP available.

“I’m a great believer that it should be another tool in the box for people to protect themselves, and had it been available in Australia the same time it was in the US, I certainly would have been on it, and I would not have been diagnosed positive,” Beck said.

“Having gone through the mental anguish of a diagnosis, to have the empowerment that perhaps PrEP would give some people as far as control over what it is and how they do it, it’s so, so valuable.”

Perhaps best known as the presenter of a number of shows on LGBTI community radio station JOY 94.9, covering sexual health, community news and current affairs, Beck is a prominent figure in Melbourne’s gay community. He’s been a force for change on local and national issues, and has argued passionately that the community needs to talk more openly about sex, sexual health and HIV.

Despite years talking publicly about HIV, Beck said nothing could have prepared him for his recent positive diagnosis.

“I couldn’t have been better aware of HIV and also aware of my failings,” he said.

“The point is that it doesn’t matter how good you are at getting the knowledge and how good you are at trying to do the right thing all the time, people make mistakes, and I make mistakes, just like everybody else, and those mistakes have consequences.”

Beck said it is vital to understand that confronting stigma and becoming aware of how stigma is perpetuated does not free gay men from its impacts. He has been particularly worried about the community reaction, that his diagnosis would be branded a cruel irony given his reputation as a HIV-prevention advocate.

“Of course. Of course I do. I’m just as exposed — perhaps even more so — to stigma as anyone else, and the timeframe from my diagnosis to my publicly speaking out about it, that time has been spent dealing with all sorts of internalised stigma around the issue,” he explained.

“There will be people that draw their own conclusions around my failings, that’s fine, they’re entitled to do that, but I would counsel anyone who is critical of people with HIV to be very, very careful, because you never know when it might just be you.”

While younger people in the community have more out public figures than ever before to look up to, there are few high-profile, HIV-positive people speaking about their experiences. The work of programs like Living Positive Victoria’s Positive Speakers Bureau is invaluable in helping people understand what it’s like to live with HIV, but Beck said the dearth of HIV-positive role models made it harder for people to come out. He cited Olympic medallist Ji Wallace and advocate Nic Holas as some of the only examples we have.

“We know that there are lots of people in the public domain that are HIV-positive, whether they are in the corporate sector, or whether they are in the arts or whatever, that are fearful of coming out, and fearful of the stigma that they would become a target of,” Beck said.

“I think it’s incumbent on our community as a whole to provide and facilitate safety for those people to step forward. Hopefully they will feel that and be able to step forward and put more voices to a very, very lonely place for those living with HIV.”

Momentum has continued to build around PrEP for the past couple of years in Australia, but Beck argued the gay community should be doing more to support and scrutinise the country’s AIDS councils. Access to PrEP in Australia is years behind the US, where, while it is expensive, PrEP has been widely available for three years.

“We’re a very complacent mob, I mean gay men in this country, because we have tremendous organisations that we rely on to be our voice in this space, and we allow them to do the work for us, so we just sit back and take it all in,” he said.

“We don’t police them and make sure what they’re doing is the right thing and the best by us, and secondly, they’re the same voice banging on about the same thing that they’ve been banging on about for 30 years. Where is the support from us to back them up and help them get some of these things across the line?”

Beck compared the PrEP situation to the long wait Australia has had for widespread rapid HIV testing.

“I was fucking furious with all HIV agencies for not screaming blue murder that rapid testing wasn’t approved quicker than what it was. Part of that was the sector itself, who for half of that period said, ‘we don’t want it in this country’,” he said.

“We were our own worst enemy in that space, because we relied on the agencies to be right, and they were wrong. This time (regarding PrEP) they’ve got it right, so we need to all get behind them and make it happen.”

Beck hopes adding his voice to the ranks of out HIV-positive men shouting for change will make a difference, and said HIV-negative people have an important role to play.

“If you’re negative, do your very best to stay negative, and use every tool available to do that, and help get PrEP available for you, or if not for you, then for somebody else who thinks they might need it,” he said.

“And if you’re critical of people living with HIV, be very, very careful, because unless you’re perfect, it just might be you one day. But hopefully with PrEP it won’t be. And if you know someone on PrEP, congratulate them for taking responsibility for their own sexual health and wellbeing, and that of others.”

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101 responses to “I wouldn’t be HIV-positive if PrEP was available in Australia: Dean Beck”

  1. I’m a 40 year old gay man who came out during the Grim Reapers AIDS ads on telly. For 24 years now I have religiously used condoms. I have never questioned this practice. Then, quite recently, I came across a large study here i the UK that showed that less than 25% of gay men used condoms, and even fewer used them 100% of the time. While I was well aware that fewer people were using them these days, I was shocked by the extent of this.

    I think we need to stop banging on about using condoms and shaming those that don’t. It’s clear that men, gay AND straight, simply hate using them. This fact is replicated in numerous studies researching condom use by heterosexual men.

    Why do we shame gay men for not using them while heterosexuals typically don’t either? This needs to stop.

    But so far as PrEP goes, we need to be pushing past this concept of expensive drugs that we as gay men should be expected to take for the rest of our lives! Yes, PrEP presents a useful tool in the short-term, but why aren’t just as many people screaming out for a vaccine to this disease? It’s been 30+ years and a vaccine is long overdue. Instead, we’re offered a drug with quite serious side-effect that we need to take our whole lives! First I’m told to use condoms for the rest of my life, and now we’re being told that we can take strong drugs for the rest of our lives. I say, fuck that!

    There are a number of serious unanswered questions regarding the long-term use of PrEP, wide-spread drug resistance being the most serious as it could potentially lead to a resurgence of an AIDS epidemic further down the line, a concern raised my a number of prominent scientists who work in the retroviral field.

    Have pharmaceutical companies abandoned the search for a vaccine in favour of the far more lucrative option of endless treatment with drugs? From my perspective, PrEP, even if it’s eventually paid for through medicare, still relegates gay men to 2nd class citizen status.

    The gay community needs to get more vocal about a vaccine.

  2. Good on you, Dean. A lot of comments here prove the stigma attached to HIV is still one of the biggest problems in the gay community. That problem is ‘denial’. Sorry people, HIV is real, it’s catchy and it can happen to you! Prep is good news. If you are at risk, *which means all of you, don’t you think it better to be safe than sorry? Although, it is obvious many would prefer to shoot the messenger than face the facts. Alas, your turn will come with that piss poor attitude.

  3. What a bunch of holier than thou pricks there are out there. If condoms worked so well we wouldn’t have an HIV problem. People need choices. Thanks for telling us your story Dean. We need more people like you.

  4. This comment thread is quite disheartening. If anyone doubts that stigma is not one of the biggest problems facing HIV prevention efforts these days then a quick scan of the simplistic, brutal and judgemental comments littered along this thread should give us all pause for thought. A new option is now available for those at risk of acquiring HIV, this is great news and we should be celebrating. Instead tired old trolls are trotting out the line that getting infected is “your own fault” etc. If condoms are that well known, reliable and well used why are infection rates going up? I’ve worked to prevent HIV for over 30 years, even from the first day we knew that apportioning blame was not going to help. The same lesson applies today. This could be a real turning point in the epidemic but we can’t shame people from coming forward and being honest.

  5. We’re grateful for all the contributors to our recent #approvePrEPdownunder video. We’re particularly grateful to Dean for putting himself out there and having the courage to publicly disclose his HIV status. We will continue to campaign for the approval of PrEP in Australia as a highly effective HIV prevention tool to be added to the suite of those currently available.

  6. Don’t think it should be subsidised in aus unless you are high risk (eg have a poz partner, or high number of partners etc). Otherwise, for condom users it’s an expensive tool that doesn’t greatly reduce risk.

  7. This is all about options and an option that works for you. Increased hiv infections are happening because people do not use condoms every single time or condoms break or they dont use condoms due to being under the influence of drugs or alcohol. We have technology available like PEP so why not use PREP and have it available.

    Moralistic attitudes need to be thrown out here. It was once illegal to provide free clean needles to addicts but was very important in reducing hiv infection rates. Should we have let IV drug users continue to reuse needles? Fuck no!

    Truvada also is well tolerated by most people, but of course each individual is different and if it doesnt agree with you then condoms are your other option.

    I am also finding that the use of Prep in the USA is enabling people who are in serdiscordant relationships to not live in fear. The fear of infecting their partner if a condom breaks can destroy a relationship if the true reality sets in when you dating someone poz and alot of people cant handle this, and if the relationship is longterm you cant expect people to use use condoms when they’ve been together for twenty years and there is prep available.

    This is simply a tool and after 30 years of the Aids epidemic dont you think we should have more options to prevent hiv.

  8. Are 99% of heterosexuals, your mum and dad, people in mostly-monogamous relationships, every woman who’s ever had a baby, and people who use other methods of HIV risk reduction morons?

  9. It’s so easy to make flippant, one-dimensional, comments like this, but to all those who have done so, I say: take a look at yourselves. The reality is that only a small minority of people use condoms every time they have sex, so almost all of us are taking some risks, some of the time.

    People take those risks for lots of reasons – some good, some bad. It’s nobody’s place to judge others’ choices, especially when you have made poor choices yourself from time to time.

    Instead of throwing stones at each other and spreading lies about the side effects and efficacy of PrEP, we need to come together as a community to support people’s sexual choices and give them the tools to protect themselves from HIV and STIs. PrEP is one of those tools, and it’s high time the gay community realised that by fighting among ourselves about it, we’re putting our own brothers and sisters at risk of a disease that is completely preventable.

    Stop judging and start uniting. That’s how we will end HIV.

  10. I’ve had unsafe sex a couple of times, and I’ve had to go through the process of finding out whether my choice was going to cost me. And that’s exactly what it was – a (poor) choice that I made. Man up and own your own behaviour. Christ.

  11. Prep is just another tool in fighting the increase of HIV the side effects for people who are currently negative are relatively minor in all but a very small percentage of people… Shaming people who want the kind of sex in which they feel closest to the one they are being intimate with is both facile and prejudicial, fucking stop it. This is effectively the equivalent of the pill but for guys… Do you think all women who are on the pill at shameless sluts? No? Well get over yourselves then.

  12. Doesn’t it improve your odds (of remaining HIV negative) if you have sex with less people also? (And do safe sex).
    Somehow, can one mix with people who would like to have an enduring relationship instead of varying sexual encounters?

  13. Responsible people use condoms . If your in a relationship it’s up to both persons to discuss parameters of both individuals sexual behaviour. It’s been 20 to 30 years since the first messages of safe sex has been and is still widely advertised warning of the dangers of barebacking or no condoms. Your sexual behaviour and choice s are your own , however so is your responsibility to look after your own body and health.

  14. I see it all the time, so many guys being unsafe, and in 2015.

    I remember in 1989 when the mcv news paper was full of pages of death notice with photos of young men.

    It would be great to have access to other drug options, but guys need to learn be safe, and assume anyone you sleep with in the gay community may be positive.

    There are positive guy out there who tell guys their negative, guy need to learn to not take risks, no matter how much they are enjoying themselves!

  15. I should add that Prep should be considered as a double check if a condom breaks or you get stuck by a needle etc, not as an excuse for unsafe sex…..

    • Sex without condoms, if the person is on PrEP, is not ‘unsafe sex’. In fact it’s probably safer than sex with condoms and without PrEP.

  16. Why would you put a drug that damages your kidneys and liver in your body case you get exposed… I think prep is ludicrous! It’s like having chemo in case you get cancer… This is not the answer as far as I’m concerned.

  17. Responsible people use Condoms , you’re irresponsible otherwise.
    Once your in a relationship it then needs to be discussed the parameters your both happy to live by.

    • Not quite true. Responsible people should also get tested regularly, start treatment if positive and continue treatment to keep their viral load down. Using PrEP is just another layer of responsibility, not a replacement.

  18. Does this mean that they have to disclose the fact that they could possibly be HIV poz to every person they are going to have sex with? If not then why do those who are HIV poz have too? At least they know.

    • The act of taking prep doesn’t prevent you from knowing your status any more than not taking prep. Actually, ppl on prep are more likely to know their status, since they’re more likely seeking medical advice in relation to sex.

    • I understand that Mark but in NSW and TAS you must disclose to any potential sexual partner if you’re Poz. My question is, will someone in prep need to disclose the possibility that they may be poz which is also a highly transmissible time due to a high viral load and or having unprotected sex. Not only does a poz person know they’re poz but also their viral load.

      • This makes no sense at all. People who are on PrEP are not likely to be HIV positive. In fact, compared to someone who is not on PrEP and has the same sexual history, they are very much less likely to have an undiagnosed HIV infection. People following the PrEP protocol have three-monthly checkups for HIV and all STIs – how often do you test?

  19. Thank you so much Dean for the work you are doing, not just in this instance, but over many years.

    The reality is that if PreP becomes pervasively available, we will get a dramatic reduction in sero-conversions in short order. The science around this outcome is undeniable.

    I hope Martin Foley is having a long hard think about this.

  20. David Vakalis has the most valid point on this post. Everyone else’s is so simplistic in point of view, not considering all the possibilities of what could or may happen

  21. I like PrEP, and I support its use, but I would like it a lot more if bareback queens weren’t jumping behind it in an effort to continue their antics. Use condoms, kids. HIV isn’t the only thing you have to worry about in the sack.

    • While the stigmatising language isn’t the best, I’m glad you offer your support of PrEP. One question though, do you recommend condoms for oral sex? If not, then the primary reason you are using condoms is for preventing HIV. Several other STIs are transmissible from throat to penis and vice versa, so unless you use condoms during oral sex, I don’t feel you are really using them to protect yourself against anything except HIV. Which PrEP does equally as well, if not better.

      That said, condoms are definitely still very useful against anal/vaginal transmission of HIV -and- those other STIs.

    • I’m aware i used stigmatising language. Not my finest hour, considering I’m a proponent for not judging others for their sexual choices. I wouldn’t say I recommend condoms for oral sex, no, so you might be right.

      The chance of contracting HIV from oral sex is quite slim, and some argue merely theoretical. So… gono for all!

  22. People aren’t claiming it is a miracle drug or ‘the answer’… Nor are any of the HIV orgs suggesting that people stop using condoms. The orgs, VAC, ACON etc are saying that it is part of a broader suite of approaches – hence the ‘Test more > Treat early > Stay safe’ tag line on the Ending HIV campaign.

    All drugs have potential side effects, but to claim that you WILL get those side effects with Prep is incorrect, misleading and disappointing. Stop simplifying the discussion.

    • I must be living in a parallel universe. In my conversations with our community “leaders” and the orgs propping them up, their discussion is not at all balanced and certainly some have suggested that “we don’t need a cure” to HIV because there is Prep. If that isn’t overstating Prep, then I don’t know what is

    • David, I don’t know who you’re talking to, but I’m regularly in contact with and keep track of HIV activists, AIDS councils/PLWHA orgs, and LGBT community press across Australia, I went to almost all the AIDS 2014 public events etc etc and I have never ever heard those sentiments. Those arguments run counter to the current health promotion strategies across the country.

      • Hey MJ. It’s the big funded orgs that have been telling you wear condoms for the last 30 years and continue to. By your logic……

    • The long term side effects of prep are not yet known and there are concerns around its safety for peoole who are already imunosupressed or have bbvs like hep c..I think its really way too soon to be releasing prep

      • Most people who go on PrEP will likely only do so for a short period – a few years while they are highly sexually active. We have more than 15 years’ clinical experience using Truvada, with several hundred thousand people having taken it around the world, and no sign of any long-term side effects. How many more decades of research and clinical experience do you think we need before it’s safe enough for you. If you’re worried about side effects, maybe consider the side effects of getting HIV, which are real, not just imaginary.

    • Mj, Support of Prep doesn’t imply that it is the only strategy, no orgs, big or small have said that in and of itself Prep is the sole best strategy. It is part of a suite of strategies.

    • There may well be concerns with side effects, as well as issues around those who have complicating factors, but truvada/prep is currently part of trials across the world, including in Australia. Trials are part of a well proven scientific approach to testing these drugs, which also wouldn’t have got to the state they are without various pre trial testing. All drugs have some side effects, trials are an intrinsic part of working through the side effects and issues.

    • Nick, two points – then let’s wait for the trials before releasing PreP. The other point is to be careful about what downstream effects introducing PreP will have. Although these organisations are not saying its a “miracle”, I have seen articles saying from gay men believing it is. It has taken a long long time to change behaviour with regard to condom use. There is talk (even amongst my friends) that PreP negates the use of condoms. There are other STDs besides HIV some of which are becoming resistant to antibiotic treatments. PreP does not prevent these infections. A colleague of mine who is a HIV researcher has made the point that other STDs reduce the effectiveness of PreP – so men using PreP to prevent HIV without using condoms will be at risk of other STDs that may make PreP ineffective. We must take all these points into account when introducing a new drug – such studies on behaviour and education must be part of the solution.

    • Prep has been on trial internationally since 2004, so there is a substantial body of research on use, that is not to say that all the issues with respect to use within communities have been resolved or that said there isnt a need to work through issues locally. The issues that you mention which have been the subject of much of the popular press and academic research. I’m not suggesting that it get released now and research not continue nor those issues not be taken into account. My initial comment was critiquing the ill informed and incorrect arguments by those initially commenting on the article, such as truvada is akin to chemo, everyone will get side effects, AIDS orgs are saying throw away your condoms etc. prep clearly has a proven place within a number of approaches to combating HIV transmission.

    • Fair enough – I agree that any kind of misinformation is not helpful. I must say that I read an article that was posted by Ending HIV by a gentleman who argued for PreP and advocated its use for bareback sex whenever he wanted. I criticised Ending HIV for this article whose response was that it was simply one perspective – a perspective that did not go challenged by a medical expert. In that respect, it was very imbalanced and I think, quite irresponsible. There is a view that PreP is a miracle drug by some in the community which I think needs to be nipped in the bud.

  23. Don’t think it’s a miracle drug unsafe sex happens this pill is tough to take has hidious side effects and can make you feel even sicker than the HIV virus advice don’t put yourself in uncompromising positions

    • While some people do experience side effects from Truvada and other HIV medications, the reality is that most people tolerate them perfectly well. Additionally there are new drugs coming out all the time, equally as effective (sometimes more effective) with even lower side effect profiles.

      Rather than telling people what to do or not do, the most effective strategy to prevent HIV transmission is to accept that people often do find themselves in a compromised position when it comes to sex, understand the reasons that happens with compassion, and to recommend people take PrEP so as not to be at risk of HIV transmission even when those situations happen. :)

    • What are these hideous side effects you’re talking about? I’ve been taking Truvada for a decade and I have not had any. The fact is that a small percentage of people who take Truvada experience mild and transient side effects, and a very small percentage (less than 1%) experience more serious side effects that are completely reversible.

      You’re entitled to your opinion on PrEP but you’re not entitled to your own facts. Stop telling lies.

  24. This Prep discussion is becoming frighteningly simplistic and overstating the “miracle power” of prep. Please people do you research, find its limits, because it doesn’t seem those lobbying and supporting the lobbying work are irresponsibly showing one side of the story

    • Yes friend of mine was in hospital with severe leg infection and apparently it lowers your immune system. Hardly healthy to have in your body. It seems most r not using condoms now because of this changing culture of protection.

    • The research so far indicates that it is likely more effective than condoms when taken as directed (because unlike condoms, prep cannot break). While ‘taking it as directed’ is a big caveat, I don’t think saying that it will protect you from HIV is overstating its benefits at all.

      And with regards to Michael’s friend, I’m sorry to hear he was so unwell… But there is no clinical evidence to indicate that Truvada (the drug commonly in use for PrEP) lowers your immune system.

    • People stopped using condoms long before PrEP. That change had more to do with the incessant harping of the condom lobby, which caused everyone else to stop listening.

    • some people were so afraid of HIV drugs that they refused to take them until it was too late. they save lives people. they are generally well tolerated and many people have no side effects except a healthy long life.

    • I suggest looking into this further before accepting it…. I was told just a few small side effects nothing to worry about, after being on it for 3 months, I’ve had the second case of cellulitis (severe potentially fatal infection) in 4 weeks, IV antibiotics for a week, 2nd course of oral antibiotics now and still won’t go, severely compromised immune system, and after many tests, everything points to truvada!! Apparently known to compromise the immune system, but that side effect was never mentioned to me before going on the PrEp trial!!

    • Stupid stupid stupid people just pop anything pharmarceutical companies give them. There a culture of ostracism and rejection of those who want to use condoms. Unless i see a condom i dont know the sex is safe. I wont put that into my body

    • Like all drugs, people have different reactions. Some take to it easily, some don’t.
      I am convinced that there is more than one solution to all of this, and everyone (gay/bi/straight/intersex etc…) should get themselves educated about all of the available options and take whatever preventatives they consider works best for themselves. If that is using only condoms or PrEP or even both at the same time, i applaud you for taking charge of your own sexual health with no shame or judgment about your decision.
      The thing im hating about this condom vs truvada argument, is all the single-minded shaming. We should be encouraging people to get educated on the options and getting tested regularly. For me, that is how we can have a positive (no pun) change.

  25. Thank you for being so brave Dean. Good luck to you and stay strong. Our whole Country needs a wake up call on HIV, the younger generations simply are not aware and or awake regarding the impact HIV has on the body and mind.