Positive Advocate engages directly with local media to advocate the community perspective.
Published in the November 2014 Edition of OutInPerth, Original title Hate Condoms? Ethical Choices Now Include Truvada
Positive Advocate: Is Truvada For You?
Striking revelations occurred last month. Two separate studies on the effectiveness of Truvada to prevent HIV were stopped prematurely, because early results were so good that having untreated participants became unethical.
Truvada is a medication currently used to treat people with HIV. Truvada pills are currently being studied in HIV negative participants as a way of preventing HIV infection, this strategy is known as PrEP (Pre Exposure Prophylaxis).
The PROUD trial is the first of the studies to announce to all participants the opportunity to take up PrEP. The study was set up to discover if the benefit of taking Truvada (daily dosing, single pill) by negative guys would be cancelled out by men using condoms less or not at all. So 545 men were randomised into two groups, all participants were offered regular STI testing, condoms, safer sex support and behavioural survey and monitoring. However, one group received Truvada immediately and the second group deferred treatment with Truvada by a year. Although the official results of the study are not expected until early 2015, the results were so effective in the Truvada group that it triggered an ethical threshold set before the study began, now everyone in the study has been offered Truvada for PrEP.
The second trial titled IPERGAY (400 participants) is exciting because instead of daily dosing of Truvada it attempts an “on-demand” strategy for taking Truvada, which is more applicable to the real world. This study set up to discover how effective Truvada would be if you took two pills 24hours before when you thought you were going to have sex or a minimum of 2hours before (e.g. on a Friday for Saturday night sex). Then, a daily single pill dosing while you’re shagging away (e.g. for some virile men this could last a week). When you think you’re finished take two final doses 24hrs apart. Hmm, lets make this strategy a bit simpler, -essentially before you have sex have some Truvada in your blood system, while romping maintain Truvada in your blood system by daily dosing, when you’re finished dose yourself for another two days.
Simpler still, take Truvada 1day before, during and two days after you actually had sex (2+1+1+1). I think overtime the creativity of gay men will finesse this prevention strategy further. Importantly the effectiveness of Truvada in the trial again triggered the study’s ethical threshold and all participants were offered Truvada.
In the US Truvada has already been approved for the purpose of HIV prevention in gay men who are negative. This happened after the iPrEx trial, and subsequently iPrEx OLE trial both demonstrated 100% effectiveness of Truvada in preventing HIV if you had sufficient amounts of Truvada in your blood. This equated to a minimum of taking Truvada (single pill daily dosing) 4 times a week.
What does this mean for Australian gay men? Currently Truvada is legal and can be purchased at penthouse prices privately through your friendly HIV medication prescribing GP. There are some Australian PrEP trials (e.g. VicPrEP) currently underway to confirm the feasibility and science of introducing PrEP in Australia. Participants of PrEP trails get access to Truvada for free. If, like Gough Whitlam you believe in free universal health care for everyone then “it’s time” to advocate on behalf of sexually active gay men. We have a right to choose our preferred method of HIV protection. Next time you attend STI testing start demanding access to Truvada.
The business case is also favourable for using Truvada as a strategy in a targeted way. Consider the simple lifetime cost of treating someone with HIV (e.g. 40+ years multiplied by $15,000 per year for HIV medication). $600,000 times approximately 1000 new infections every year, that’s $600 million potentially added to the PBS every year. Now consider targeted Truvada to the 1% of highly active gay men (e.g. 2200 times $15000 per year), $33million per year. These highly sexually active men would only have to prevent 55 new infections per year for the government to break even on its investment. These inaccurate playful numbers would not stand up against health economist scrutiny, however the maths is accurate enough to make the point that investment in HIV prevention and HIV cure research creates a massive public health return in time.
Preventable infections with targeted Truvada as PrEP could make a significant dent in the Australian HIV epidemic. Given the international science, delays in the introduction of targeted Truvada is not only potentially unethical it could also be described as a material systemic failure of public health policy in Australia. Some people who struggle with condoms and acquire HIV, would have every right to become extremely angry at having been denied Truvada as a prevention option.
Published in the June 2014 Edition of OutInPerth
Positive Advocate: Can This Pill Help You Stay Negative?
Making a bold move, this month the USA Centre for Disease Control and Prevention (CDC) has recommended that people who are “at substantial risk for HIV” consult their doctor about starting a daily pill (Truvada) to prevent HIV. Although condom use along with other prevention methods are also recommended the New York Times (NYT) reported that CDC officials are increasingly frustrated with consistently high annual new HIV infection rates of 50,000 and the ongoing decline of condom use. In 2011 a survey by the CDC reported that just under 60% of gay men had unprotected sex in the last year, this trend is repeated internationally, in Australia condom use has also declined.
When the before pill (Truvada) is taken daily, the reduction in HIV transmission amongst gay men reached a high of 99% (check out the scientific evidence, look up iPrEx trial). There is a direct correlation between the effectiveness of Truvada and how much of the drug you have in your blood (or to be more technically accurate the mucosal lining of your rectum, where most sexual transmission of HIV is likely to occur). So taking the pill the night before will probably not give the drug enough time to build up in your body for the full preventive effect. Daily dosing and the potential for side effects are the disadvantages of this HIV prevention strategy.
Focusing intentionally on gay men’s sexuality, for whom is the daily pill Truvada useful for? Predominately for gay men who don’t like to use condoms or use them inconsistently with their multiple partners. Keeping it simple some examples could include: if you’re having casual sex (fuck buddies included) and not using condoms every time, if you’re going to party hard or on holiday and are likely to meet lots guys and not always use a condom, if you’re starting a new relationship and are thinking of dropping condoms early (before mutual testing and sexual agreements), if you have regular Poz fuck buddies (who may not be on their own HIV treatments), or if you’re in a loving relationships with a man with HIV and would like intimacy without condoms. A daily pill to prevent HIV is not useful for gay men who are content with consistently using condoms.
In Australia, how could you get access to the before Pill Truvada (known as Pre Exposure Prophylaxis or PrEP) to prevent HIV? Well the answer is somewhat complicated.
Ideally you could walk into your local community pharmacy or gay men’s sexual health clinic, have a conversation with an appropriate person (e.g. pharmacist, doctor, trained community health worker) receive a three month supply and start.
In Australia you could get free access by participating in a Victorian Study called VICPrEP which aims to prove that PrEP can be implemented safely and effectively. You could find a Gay friendly HIV specialist doctor who is happy to prescribe, unfortunately Truvada is not listed under the PBS for PrEP. However you could pay the full retail price around $1350 a month, or email the script to a generic supplier (e.g. Cipla in India) or online pharmacy for approximately $250 a month. Another option is to travel and find a PrEP friendly country (e.g USA, India, Thailand) make a doctor’s appointment and receive a personal supply.
This conversation reminds me of the movie “Dallas Buyers Club” and how individuals felt compelled to work around a regulatory health system that failed to meet and respond to reasonable community demands. Having access to a before Pill (Truvada) is perhaps not a life and death scenario? However try telling that to a newly diagnosed individual, who could have benefited from this HIV prevention method.
Conceivably, as HIV medication patents expire and the cost declines, we will achieve more traction on the before pill for HIV prevention in our community. Every year we delay the implementation of science proven HIV prevention strategies about 1000 people acquire HIV in Australia. How badly do we want to end HIV in Australia? Daily pill to prevent HIV, bring it on!
Published in the April 2014 Online Edition of Out in Perth
Positive Advocate: We’re All Winning: Positive Sex Rules?
A multi centre European study has for years been following 767 poz-neg couples who were not using condoms and recently published breakthrough interim results. Take note, the persons studied with HIV were successfully on HIV meds, also known medically as having an “undetectable viral load” which means they took their HIV pills to maintain a level of HIV in the blood that was below the level of detection.
So how many HIV transmissions transpired? Drum roll and spotlight please, the answer ZERO! ZILCH! NADA! Whoo hoo, for poz-neg couples it seems Christmas has arrived early indeed.
The PARTNER Study was presented by Alison Rodger on the 4th March this year at the 21st Conference on Retroviruses and Opportunistic Infections (CROI) in Boston, at which two year interim data was revealed (www.croiwebcasts.org).
Of interest, 282 of the couples studied were gay men. 16% of the gay couples had another STI which did not alter the “zero” result of HIV transmission. Which brings into question STI public health messages that warn poz guys that, even though they’re on successful HIV medication, another STI could lead to an immediate and imminent viral load break out, making them more infectious?
Given the results from the PARTNER study, it seems at the very least the risks involved have been severely over stated and over played in the context of poz guys with successfully suppressed HIV (i.e. undetectable viral load). It also doesn’t take too much imagination for many to deduce that perhaps “HIV viral blips”, their occurrence, frequency and consequence have also been over stated.
Viral load sceptics aside, what does this mean in real life? It appears that poz-neg couples can increasingly adopt the new default position, that while successfully on HIV medication a person with HIV is “non-infectious” (as adopted by the” Swiss Statement” of 2008). A potential challenge now, is for health science research to identify the exceptions to this new rule. We are in exciting times. There is now enormous incentive to immediately test and treat, thereby reducing the unknown positive in our communities. It’s a winning benefit to all if we want to end the HIV epidemic.
The National Association of People with HIV Australia (NAPWHA) announced this month a Public awareness campaign titled “The Wait Is Over “. It seeks to underline both the health advantages of starting treatment early and the additional HIV prevention benefits that can now be accessed. The Pharmaceutical Benefit Scheme (PBS) changes taking effect this month now allows people with HIV to effectively start treatment once HIV diagnoses occurs.
Professor David Cooper, Director of the Kirby Institute in Sydney has welcomed the NAPWHA campaign, saying , “HIV treatment has a powerful benefit of helping prevent transmission of HIV to others”. He added, “Interim results recently released from the PARTNERS study have confirmed that HIV positive people who are taking HIV treatment successfully have a greatly reduced risk of passing HIV onto their partners. The powerful impact of HIV treatment in preventing onward HIV transmission should be a significant factor in choosing to commence treatment for many people who wish to do all they can to protect their partners. This PBS change will allow that to happen more easily”.
When reviewing some online commentary to the PARTNER study, it seems that most welcome the results, and many have responded with cautious optimism. For some liberated poz-neg couples, it could be easy too view opposing responses as (be warned some strong language follows) nothing more than, homophobic, hope obliterating, sex negative trolls on a moral panic crusade. However, once you get past the emotionally charged advocating warrior within, there are some valid concerns. For negative men who hook up with casual guys who claim to be HIV free (but are really untested) condoms remain an effective prevention strategy against HIV and will remain a gay cultural norm for some time to come.
It seems the rules of sexual engagement have changed however by working together everybody can win from treatment as prevention.
Published in the Feb 2014 edition of OutInPerth
Positive Advocate: How to Date a Poz Guy
So you’ve met the man of your dreams again, only this time it turns out he’s living with HIV. At first your cool about it: “Hey, he can’t help what he has, right?” and “It’s not like I’ve never barebacked, it could happen to anyone.”. Still annoying irrational 80’s thoughts keep creeping in. “I don’t want to die”. You rattle and shake the thought, after all you know that people with HIV now live for an almost normal life span. You also know you’re not alone, nearly 60% of poz guys who are in a relationship have a neg partner.
Still it’s time to brush up on your sexual education. Poz guys are not always born natural educators. You consider your options, WA AIDS Council educators “community friendly and free”, HIV specialist nurses and doctors “may cost, time limits”, Internet “mmm, better go to reputable sites”. You take all the options, but find your mate Josh who’s been in a pos-neg relationship for 3 years the best source.
With your knowledge refreshed and your confidence up, you continue to have intimacy and sex with your partner- “you’re so fucking hot” -minus all the angst you initially started with. After 6 months your emotional connection is now so strong you contemplate how cruel life would be without the constant love you create and accept from one another. Your desire for full, natural sex builds within, you share your thoughts with your partner only to find him adamant. “You don’t need to prove your love by barebacking”. He expresses his personal fears over transmission. “One of us with HIV is one too many, I want you safe for a life time.” He gets upset and you realise that he still has some of his own personal healing to do. The conversation brings you even closer as he communicates in more detail than ever his personal story and journey.
It finally happens, your partner’s worst fears, 9 months into the relationship, the condom broke. You have big discussions on what it could mean, what would change if you too were to have HIV. You decided to love each other no matter what. Secretly you’re glad it came to pass, as you wanted to experience all of him. Also you know that because he has an undetectable viral load, it’s almost impossible for him to pass on HIV and the risk is nearly zero. Still, you front up to the hospital emergency department, after asking about your circumstances and checking you’re within the 72 hours of the potential exposure, they give you PEP. A month’s worth of HIV medication to prevent HIV from potentially establishing itself.
You decide to be proactive and make an appointment with a knowledgeable and community friendly doctor. You discuss with him the potential of having a home starter kit: “the hospital drama feels completely unnecessary”. The pills in your case were easy to take, your result is still neg. You chat with your doctor whether you could have daily Truvada, a HIV pill that you read can reduce by 90% plus that chance of getting HIV if exposed. It kinda makes sense to you to do whatever you can to be with the man you love. Some family and friends have been supportive, some not so. Your partner trusted that you would only tell people you needed to talk things through. He’s still sensitive about who knows, and after some of the reactions from close friends you now understand why.
It’s now been almost a year, It’s funny how little you think about HIV now. Most of the time you’re playing, going out to dinner with friends and having fun with your partner. Talk has started about moving in together, his place is nicer, but you’re definitely the better cook. You’re happier than ever, the decision to love rather than stay scared has been worth it.
Published in the Sept 2013 edition of OutInPerth
When Will The First Australian Be Cured of HIV?
At the 7th International AIDS Society Conference On HIV Pathogenesis Treatment and Prevention, Dr Timothy Henrich reported on the progress of two ‘Boston patients’ who were treated for blood cancer lymphoma (one about three years ago and the other five years ago). Both men received chemotherapy and stem-cell transplants, and now after ceasing antiretroviral medication to suppress HIV, so far have no trace of HIV in their blood, for a period of fifteen and seven weeks respectively.
If you add together the ‘Berlin Patient’, the ‘Mississippi baby’ and the two ‘Boston Patients’, the world of HIV is now tracking the progress of four patients that have potentially been cured of HIV. The knowledge gained from these very rare and unique cases is driving hope and optimism that a cure for all is fast approaching.
Many in the medical profession are keen to moderate community expectations. Knowing that clinical trials and the potential scale up of a cure could easily be five, ten or more years away. In reality no one can give a definitive answer as to when a HIV cure for all will arrive, if ever. However, as the number of potentially cured individuals grows so will most likely the speculation. Many in the HIV sector are now using the term ‘HIV remission’ instead of cure as a more accurate way of describing the results being observed. This early on, in cure research, has doctors unwilling to as yet guarantee that HIV has been eradicated from every cell in the body, for all time.
Unlike the ‘Berlin Patient’ (Timothy Brown), the hype following the ‘Boston patients’ can be justified with two key different points. According to Dr Henrick they undertook “gentler chemotherapy (reduced intensity conditioning ), and the stem-cell transplantation received was not from a donor who had naturally resistant immune cells to HIV, which is rare (less than 1% of the population). This means that a potential HIV cure has just become safer (i.e. less chemo) and more widely applicable to everyone (i.e. easier to find compatible donors). Watching the HIV cure space evolve is like observing Moore’s law, where computing hardware capacity doubles every two years, that maybe my personal optimism creeping in, pardon the indulgence.
One hypothesis proposed by Dr Henrich as to why the ‘gentler chemotherapy’ and easier to find donor for stem-cell transplantation worked included the possibility that the donor immune cells were sufficiently different from that of the host immune cells. Leading to the donor immune cells to bump out and eliminate the hosts immune cells where HIV was resting/hiding. To confirm the true reason for HIV eradication will require further research and willingness by patients to place their health and their lives on the line.
The Star Tribune reported on Eric Blue a boy aged 12, who was born with HIV. On April 23rd he received an experimental treatment at the University of Minnesota for HIV and Leukaemia. Eric Blue died July 5th. The donor providing the stem cells was not only compatible but also had the advantage of immune cells genetically resistant to HIV. His treatment pathway was closely aligned to that of the successfully cured ‘Berlin patient’. The testing on Eric Blue, while not yet conclusive revealed that he had cleared HIV and the leukaemia. According to Dr. Michael Verneris, “This patient absolutely needed to have this transplant”. In June, Eric Blue developed graft-versus-host disease, a complication from stem-cell transplantation where the donor immune cells attack various tissues of the body. While the disease can be treated “…he had an especially bad form of it” said Dr. Verneris.
It seems cruel that any young person would have to endure HIV from birth, develop leukaemia, become free of both and then die weeks later. It is important to acknowledge the pioneering medical contribution of Eric Blue. The history of HIV is full of dignified men and women who have been prepared to participate in medical experimentation for the benefit of the greater good. Most of us stand in admiration and gratefulness for their efforts.
The mortality risk associated with chemotherapy and stem-cell transplant can be as high 20%. Individual circumstances like age, disease progression and chemotherapy intensity amongst others can vary the risk. There is no getting away from the notion that for some people living with HIV, taking a pill once a day is preferable to the 20% risk of death. Even so many others are very willing and prepared to risk their health in order for modern medicine to make further advancements.
Some doctors too, must be prepared to step out of their standard treatment guidelines and be prepared to explore options for improvements in HIV treatments and prevention. Innovation is rarely riskless. Which doctors and patients (who HIV and cancer) in Australia are prepared to take on the brave challenge?
The International AIDS Society conference comes to Melbourne in July 2014. Progress on all four potentially cured patients will most likely be widely sought after and broadcast. How wonderful would it be if soon Australia could lay claim to our own HIV cured person. To the courageous people, like Eric Blue, who accept the risks and nevertheless embark on the journey to advance human medical science endeavours, we deeply thank you.
Published in the July 2013 edition of OutInPerth
POSITIVE ADVOCATE: Science Confirms HIV Meds Can Play A Prevention Role
A Bangkok study of injecting substance users has confirmed that taking the HIV pill-Tenofovir can reduce the risk of acquiring HIV by as much as 74% when study participants were limited to people with actual Tenofovir concentrations in their blood. Taking the pills as prescribed seems to be one of the greatest barriers to employing this prevention strategy, with older men and women faring better than younger men in their ability to take meds more consistently. According to the US Centre for Disease Control and Prevention, injecting substance use accounts for nearly 10% of global HIV transmissions, this rate increases to 80% in some regions of the world like Eastern Europe and Central Asia. The proven scientific evidence for the role of HIV meds to prevent and reduce the risk of acquiring HIV continues to grow and appears conclusive.
Professor David Cooper of the Kirby Institute, a prominent figure in HIV Medicine recently spoke to the ABC emphasising the importance of bringing together HIV pills for prevention with existing measures. “It’s another tool in our toolbox in HIV prevention,” said Professor Cooper, “but it doesn’t replace the need to prevent transmission in this population by providing needles and providing methadone programs for them.” Professor Cooper’s comments highlight the importance of adopting a combination of prevention approaches that are tailored to specific populations and individuals.
In Australia, taking HIV medication every day to prevent potentially getting HIV is known medically as Pre Exposure Prophylaxis or PrEP for short. Sometimes language can be an unfortunate barrier to that stops us accessing what is essentially a very simple and important HIV prevention strategy, it might be easier if we called them the “before pills”.
The Queensland Government has already begun a working group for the commencement of a community-based trial of PrEP. Alongside their PrEP trial Queensland has also announced point of care rapid HIV testing through their sexual health clinics, this started rolling out in June. The AIDS Council of N.S.W. (ACON) last month set up Australia’s first community-based rapid HIV and STI testing centre, operated by and for gay men.
What’s happening in WA? Our very own M-Clinic was the first in Australia to set up a HIV and STI testing centre, operated by and for gay man. Why has rapid HIV testing not been introduced? Given the role of HIV medication could play in HIV prevention are opportunities being missed?
WA’s own HIV epidemic (around 40-60 diagnosis per year) amongst gay men is essentially very small. Hypothetically, one person who doesn’t know they have transmissible HIV could shag one person every weekend for a year and drive most of our entire epidemic. The small numbers in our state are our advantage. We could end the HIV epidemic in WA now if we use all the prevention tools available to us.
One undervalued strategy worth strongly considering is ensuring negative guys who have a high likelihood of coming into contact with HIV, have easy access to HIV pills that can prevent infections both before and after. So, pos-neg couples could have home starter kits. Neg guys who prefer to have intercourse without condoms could be on HIV pills. The M-Clinic, could help by having starter kits available for when guys don’t use condoms casually. They could potentially assist some neg guys plan their lifestyle with HIV prevention in mind, such as guys who use substances or plan going over east or overseas to party hard. HIV Pills to prevent HIV infection needs to be tailored to a population and an individual’s specific needs.
Often cost is used as an argument to block progress, who pays? This argument is used even before an investigation into the maths of an intervention has been done, or to even consider when and where a health intervention could be optimised. On dubious moral grounds some opponents assume “why should I have to pay for their hedonistic lifestyle?”
Access to health and to the protection of health is a universal human right and no one individual or group has a right to deny another. The Australian community overwhelmingly supports our universal health system. We recognise that we all make lifestyle choices that impact on our health e.g. work, travel, sport, alcohol, food, cigarettes, sleep or children. To moralise and judge between choices is unacceptable, it is this very reason that doctors are required to take the Hippocratic Oath and treat everyone equally without favour or prejudice.
So what may we need to get loud about? The gay community fought hard in the 80s and 90s to get access to life saving HIV medication. The worst of the bigots believed that gay people with HIV deserved to die without dignity. We stood up against them, pushed back and won.
In 2013 many gay men desire natural intimate sex and connection and reject the notion of using condoms every time in every situation. An empowered community incorporates the best knowledge and technology to its advantage and needs. Could we be using HIV treatments as prevention more effectively? The short answer, in my opinion, absolutely YES! We all have the right to use and access the medication we need to protect our partners.
Published in the June 2013 edition of OutInPerth
Positive Advocate: Is it Game Over for HIV?
French scientists recently published the tantalising prospect of having ‘functionally cured’ people with HIV. Eight of the 14 people observed have consistently maintained undetectable viral load for more than 4 years without needing to take any more HIV medication.
The study called VISCONTI (Viro-Immunological Sustained CONtrol after Treatment Interruption) estimate that one in seven people (15%) with HIV could become ‘post treatment controllers’. Meaning they are able to maintain an undetectable viral load without medication, effectively becoming “functionally cured”. The study suggests this could be achieved by treating people with HIV medication within 10 weeks of primary infection and keeping them on medication for a median of 3 years (the shortest period observed was one year ).
The benefits of early HIV treatment after primary HIV infection now seem overwhelmingly favourable. Some of the benefits include; the potential of being functionally cured, a more intact immune system for longer, a reduced latent HIV reservoir and a massive reduction in infectiousness. Naturally achieving this requires individuals and the community to be informed and have the early treatment discussion with their up to date Doctor. As with many health issues, articles (like this one) have limits in their capacity to fully communicate the complexity of individual circumstances, so a good relationship with your Doctor is essential.
With the tremendous benefits of early treatment in mind, the U.S. Preventative Services Task Force (an independent volunteer panel of national experts in prevention and evidence-based medicine) has embraced the early testing and treatment paradigm. On the 30th of April Dr Doug Owens was quoted saying that “Nearly a quarter of people with HIV don’t know that they have it, and they’re missing out on a chance to take control of their disease. Universal screening will help identify more people with HIV, allowing them to start combined antiretroviral therapy earlier and live healthier and longer lives.” Increasingly the conservative Australian HIV response runs the risk of being out of date and out of step with the most compelling evidence based medicine from around the world, more often playing a game of catch up. An example would be the slow uptake of rapid HIV testing opportunities (New Zealand has been doing them for years).
Most of us though, would probably be content at the steady and cautious approach by the Australian HIV sector. This lesson was learnt at the early stages of the HIV epidemic. When first generation HIV medication became available in the 1990’s a “hit hard hit early” approach was adopted by many. However some people with HIV today still live with the negative long term consequences resulting from pill toxicity and suboptimal pill adherence from that era, others are very grateful to be alive. This historical legacy deserves our compassion and understanding.
Gradually though times of changed, with third generation HIV medication now being simpler to take with little or no side effects for most. Critics of the Australian HIV response believe the conversation of when to start HIV treatments has moved on and would like to see less reliance on a individuals CD4 count and a greater emphasis on, preserving immune function, the role of treatment as prevention, and now the opportunity to be ‘functionally cured’. Community members who have most to gain from new medical evidence and strategies are eager to exercise their right as well informed individuals to choose what is in their best interest; without interference from paternal policy (we know what’s best for you) and overly conservative gate keeping doctors.
If the VISCONTI study holds true, and a much larger study would need to confirm the results, then the course of HIV in Australia could fundamentally change permanently. Now buckle up for a ride into speculation and an opinion of a possible future. HIV testing regimes would be normalised, rapid (under an hour) and convenient (home based testing is already available in the U.S.A.). Sexually active individuals would know of their HIV status early (within 10 weeks of infection) and be treated immediately. Leading to many of them taking HIV medication for a minimum of a year. After which their own immune system will keep any residual HIV virus in check, below the level of detection and infectiousness, no more pills, no more side effects, no more expense to the government through the Pharmaceutical Benefits Scheme. Too soon, too rosy a vision? Perhaps.
What about the 85% who are not functionally cured? Indeed, for people who have to remain on HIV pills, the side effects will for most remain benign, your immune system remains intact, you maintain an undetectable viral load and so have the benefits of being dramatically less infectious. Plus as a result of starting early treatment you may have reduced your latent HIV reservoir, making it more likely that when a cure arrives, you will clear HIV from your body completely.
No one can predict the future, however the seeds of a new trend have been planted by the VISCONTI study and what implications it will have for HIV policy, public health laws, and community responses to HIV. Yet what humanity as learned from HIV could live on forever. Like how to respond humanely to a new or emerging infectious disease, application of resources upfront and early so as to avoid despair and death, how to coordinate global health responses and funding, empowering a community centred response, and global coordination and collaboration on cure research. Is it game over for HIV? You decide.
Published in the April 2013 edition of OutInPerth
Positive Advocate – Is the WA HIV Community Stepping Up?
For the first time this year, people living with HIV (PLHIV) had the opportunity to meet and discuss their current priority and concerns with their two newly elected W.A. National Association of People With HIV Australia (NAPWHA) representatives, Diane Lloyd and Ash Jones
Almost all fifteen attendees of the first WA PLHIV Community Forum for 2013 welcomed the constructive and mature proceedings of the meeting. Diane Lloyed commented “People seem to have a lot of ideas and suggestions to go forward. It’s great to have community involved, and the ongoing commitment from 10 to 12 people.”
NAPWHA and the WA AIDS Council (WAAC), have been supporting the W.A. PLHIV Community Forums, since the collapse of the HIV/AIDS Peer Advisory Network (HAPAN) in 2012. Currently WAAC, provides organisational support through venue hire, catering and promotion of the event to PLHIV. NAPWHA has also invested in supporting the PLHIV community in WA by providing professional facilitation and when possible executive leadership from the NAPWHA board.
Although PLHIV Community Forum is not a formal organisation, the meetings have been significant in achieving ; an agreed process for how WA NAPWHA representatives are elected, defining the scope and limitations of their role, a yearly structure of forums to canvass priority areas of concerns which is then reported nationally, and a face to face opportunity for broader PLHIV community engagement and networking in WA.
Even with the appreciated and ongoing support from NAPWHA and WAAC, some dissatisfaction became apparent when the topic of how to improve community engagement was discussed. Some individuals expressed their frustration of having to go through WAAC to organise an event (as it has a trusted and confidential contact list). Stigma and unwanted communication of an individual’s HIV status may also be preventing many from engaging. Consideration was given as to how the PLHIV Community Forum could be more broadly promoted while maintaining the privacy of individuals and the event. It was acknowledged that how we engage with the community is an important topic which required further dialogue at future events.
The role of the openly HIV positive representative on the WAAC board was also discussed. Of particular concern was the process for selecting the individual. Previously HAPAN would recommend an individual to the WAAC Board for endorsement and adoption. Over more recent years the individual is internally appointed without consultation from the HIV community. This has lead to perceptions of cronyism by some, as there is no apparent formal nomination process, selection criteria or accountability to the community (through reporting or direct election). The performance of the openly HIV positive representative on the WAAC board was not in question. Community members attending the forum, requested that a letter be sent to the WAAC Board communicating that the current arrangement was not acceptable. Instead proposing that a new position and a more transparent and accountable process be formulated. More broadly, there seems to be little coordination of people representing PLHIV on various health bodies and agencies in W.A. Most forum members believed that people involved in representing the interests of PLHIV could be encouraged to attend the community forums and feedback updates and progress.
Barriers to access HIV medication and the potential introduction of co-payments were explored. Waiting times (e.g. which can sometimes stretch out to between 2-4 hours at Royal Perth Hospital Out Patient Pharmacy) were considered a significant barrier to approximately half the people who attended. With many preferring the option of a community pharmacy. Co-payments for HIV medication was the highest concern to the other half of forum members, particularly individuals working part time or on low income. How Serco, the new private for profit operator would conduct itself at the new Fiona Stanley Hospital is a source of uncertainty and anxiety for some. The two main reasons expressed why a co-payment could impact negatively onto the community included; firstly, ad-hoc dosing, leading to the increased possibility of individuals developing resistance which then holds back efforts to control and minimise the emergence of resistant virus in the community, and secondly, delayed treatment uptake, which means that the community viral load could increase dramatically hindering HIV prevention efforts. It was widely accepted by the forum members that the small short term monetary gain of a co-payment would quickly be eliminated by the large medium and longer term costs of increased HIV infections in the community. The forum members resolved to request WAAC to convene a round table meeting of health agencies, stake holders and decision makers to clarify and justify potential changes to co-payment arrangements for HIV medication.
WAAC and NAPWHA have given notice to attendees their intention to pull back and let the WA HIV community conduct future events. In part this acknowledges the constructive progress that has been made by the individuals who have contributed to the W.A. PLHIV Community Forums. It may also remind us that sustained HIV advocacy in WA will over the long term need to comes from, talented, passionate, committed, empowered and altruistic individuals that reside in W.A. As the community builds confidence in each other and develops a shared vision forward, the prospect and desire for an independent and fully funded peak PLHIV organisation in W.A. will increase. In the mean time, the community through the forums will have an opportunity to demonstrate how it can step up, collaborate and create value for all communities. The next PLHIV Community Forum is scheduled for Saturday the 13th of July.
Published in the February 2013 edition of OutInPerth
Positive Advocate: Is Cure Talk Helpful?
With ongoing reports of research that could potentially cure HIV/AIDS, what is the impact of ‘cure talk’ on prevention efforts? Most people whole heartedly embrace and applaud the research efforts that are being undertaken to cure HIV/AIDS by scientists all around the world. Most recently the media picked up on the good work being conducted by the Queensland Institute of Medical Research, where Associate Professor David Harrich reported on how they have altered a protein that HIV uses to replicate, thereby hindering its capacity to damage the immune system. The hope expressed was that this could lead to a one drug, once a day regime, instead of two or three drugs commonly used today. Although not technically a cure (that would remove all virus from the body), a functional cure aims to permanently suppress viral replication, while restoring the immune system to normal so that AIDS symptoms never happen.
Animal trials are due to start early this year and even though strong results are expected; any material drug for treatment would be many years away. Placing primary research apart, the protracted time it takes to bring a drug to market is mostly due to clinical trial processes necessary for drug approval, which typically involves a variety of phases. From small (10-15) in human trial to test pharmacodynamics (what the drug does to the body) and pharmacokinetics (what the body does to the drugs), to a trial to test and confirm effectiveness and to monitor for side effects (normally involving 1000-3000 people).
After more than 30 years, the community, people with HIV as well as many scientists are calling for efforts towards a cure be hastened. This culminated in 2011 with The Rome Statement for an HIV Cure, where major HIV/AIDS Stakeholders called for HIV cure research to be accelerated. This year in Kuala Lumpur, the International AIDS Society will be hosting a June symposium titled Towards a HIV Cure. No doubt, cure talk will again become more noticeable during this time. As will the call from activists demanding that processes be improved so that the benefits of modern technology and synergistic collaboration could be fully realised. Much of the world is desperate for an accessible cure for HIV to be announced; it has already been almost 7 years since Timothy Brown known as the ‘Berlin Patient’ became the first person cured of HIV/AIDS.
After the cure discussion in the media has ensued, what community expectations are formed? Idealists and optimists might assume that a HIV cure is imminent and therefore efforts to maintain safe sex practices may no longer be necessary. If this perception is added to the view that current medication to treat HIV is already good enough for a long and productive life and to reduce the likelihood of transmission; then you have a very real challenge to the condom every time paradigm.
Cynics and sceptics are more likely to down play media reports of a potential cure to HIV. Their gaze is often fixed on the profit motive of researchers seeking funding arrangements and pharmaceutical company’s incentive to prolong and extend the HIV epidemic. Believing that a HIV cure is nowhere in sight, that sexual discrimination for having HIV is common, and knowing that not everyone does well on HIV treatment (even though most do), the cynics and sceptics may be more conservative when practising safe sex, ignoring bareback porn, the condom relic tag and not trusting people who claim to be clean.
Holding onto either view in the extreme can have negative consequences for the health of our communities. If you are too optimistic then you may be taking a greater risk than you realise. Increasing reports of unprotected sex with people of unknown HIV status, particularly in a casual setting is most probably one of the main drivers of the HIV epidemic in WA. The cynical view of treatments and its effectiveness can also have a negative impact, consider the Kirby Institute suggestion in its HIV Surveillance Report 2012, that the amount of people living with HIV on treatment could be as low as 53%. This means that an overly negative perception of treatments could be one of the main causes of a potentially high community viral load. Both views can adversely contribute to the HIV epidemic and lead to a rise in HIV infections.
While welcoming progress and research towards a HIV cure, endeavours to optimise what we know works today ought to be maintained. Some of these included; getting tested, getting treated and maintaining condom use. We know these simple messages are not enough to protect everyone, given some of our preferences and the complexity of our sexual practices, relationships and environments. Nobody’s choices are perfect all of the time, but hopefully they come from a place of being well informed and not biased to any particular extreme view.
Every now again friends and family may call or email you about some new potential cure they’ve just heard in the media. These moments are often a time to be grateful for their support and love no matter what your current HIV status. They are affirming the hope most of us have for ourselves and each other to live, loving, long, happy, and healthy lives. May we continue the cure discussion and evolve our research practice to accelerate the benefits of our combined ingenuity and knowledge, all the while being centred on optimising what is already known before us today. Who will be the first person in WA cured of HIV? Most likely it will be a brave soul who will choose to participate in a clinical trial.
Published in the February 2013 edition of OutInPerth
Could HIV meds save your sex life?
People newly diagnosed with HIV often abstain from having a sex life. So strong is the desire to not ever pass on HIV to others that sexual intimate relationships are sometimes forfeit for years after their diagnosis. It is no coincidence or surprise then that for some people with HIV the lack of sex and or intimacy can lead to episodes of anxiety and depression. New HIV medication prescribing guidelines in the USA are now confirming the scientific evidence, that HIV pills can play a critical role in HIV prevention efforts. It is generally accepted that medication for HIV has extended life expectancy to almost normal for most; could it also transform the sex lives of people with HIV?
On the 4th February this year Living Positive Victoria released and published a ‘Position Statement on Early HIV Treatment for Individual Benefit and For Prevention’. Sam Venning, President of Living Positive Victoria said, “HIV treatments are now more effective, have fewer side effects and are easier to take than ever before and there is growing evidence that not only do these treatments support and protect an individual’s immune system, they can significantly decrease the forward transmission of HIV. We believe that Living Positive Victoria has a responsibility to support people with HIV to consider the early treatment option.” The simple message, early treatment is beneficial to your health and to prevent HIV.
In Australia, the Australasian Society of HIV Medicine (ASHM) has the task of interpreting guidelines from around the world. In general we tend to follow the lead provided by the USA Department of Health and Human Services (DHHS), with some nuance, given by ASHM for the Australian context (e.g. technical differences or drug availability). What’s new? The USA guidelines now recommend that everyone with HIV ought to be on HIV medication for their greater health benefit. However the recommendation slides from strong to moderate when your CD4 count (an indicator of immune function) is above 500. Another big change is that HIV medication is now recommended for the prevention of HIV, with expert opinion being strong for all risk groups. Commentary by ASHM on the USA guidelines (updated 12th Feb 2013) has not yet been made.
Recently the National Association of People With HIV Australia (NAPWHA) finished a campaign encouraging people with HIV to start a conversation with their doctor over the improved health and prevention benefits of starting HIV treatments early. Jo Watson, Executive Director of NAPWHA, commented that the new guidelines are another step forward, “The evidence is still continuing to evolve and getting stronger, it’s even more important to continue our strategies to support people to start treatment and maintain the benefit. We believe, addressing people’s anxiety and fears, while overcoming barriers against access and dispensing is a pathway worth embracing.”
No matter who makes the recommendation, everyone always has the right to decline any medication. The decision of when to start treatment, and on what, can be complicated. HIV specialist physicians consider; potential adverse drug side effects, a patient’s comorbid conditions (e.g. cardiovascular disease, liver or renal disease, psychiatric illness, etc.), known or potential drug interactions with other medications, patient preferences (when possible) and convenience (like pill burden and dosing frequency), amongst other factors. Although ‘God Google’ can build understanding and confidence in health consumers to make their own decisions, the practical reality is most of us remain heavily reliant on the knowledge and decision making capacity of our trusted doctor. The new USA guidelines seem to finally acknowledge a more holistic view of individuals living with HIV and their partner/s sexual and intimacy needs and desires. Given the extraordinary reduction of risk that successful HIV medication can achieve (over 90%), the sex lives of many pos-neg couples have been transformed. The tangible reduction in stress and anxiety has lead to better sex and healthier relationships for many.
In the UK, the British HIV Association and the Expert Advisory Group on AIDS published a ‘Position statement on the use of antiretroviral therapy to reduce HIV transmission January 2013’.
“There is now conclusive randomised clinical trial evidence, from heterosexual couples where one partner has HIV and the other does not, that if the partner who is HIV positive is taking effective ART, transmission of HIV through vaginal sex is significantly reduced (by 96%) . The observed reduction in HIV transmission in a clinical trial setting demonstrates that successful ART use by the person who is HIV positive is as effective as consistent condom use in limiting viral transmission.”
The conditions for this statement are then explained in detail (easily web searched if inclined). Caution, at this stage it is only expert opinion from the USA guidelines that declares the likelihood that HIV medication also reduces the risk to other populations like gay men.
If HIV medication is so effective then why do we see increases in HIV? The campaign ‘Ending HIV’ produced by the AIDS Council Of N.S.W. (ACON) targets some of the main reasons for gay men specifically; untested gay men who might have HIV, untreated individuals with HIV (estimated at approximately 50%), is combined with gay men having way more natural sex than in previous years, resulting in increases.
So are people with HIV ready to use HIV pills for prevention? Is the general community ready to accept that successful application of HIV medication is as effective as condoms? Can HIV medication save your sex life? You tell me!
Published in the January 2013 edition of OutInPerth
…and Advice to Squeaky Clean Whores!
Many gay men with HIV are fed up with people’s profiles on dating websites who blatantly stigmatise and discriminate by posting references like ‘clean, you be too’ or ‘disease free, you be too’. Some men are now choosing to reclaim the word ‘clean’ by refusing to buy into this display of ignorance and bigotry.
Communities have a history of reclaiming words that have been used to stigmatise and discriminate. The gay community itself has reclaimed many words, for example ‘queer’, ‘faggot’, ‘slut’, and most recently ‘ho’. None of these words hold the same power to cut and intimidate with self righteous moral authority as they once did.
In a time where everyone it seems participates in the formation of culture and its propagation through social media, communities living with HIV are giving a clear signal that ‘enuf is enuf’ (www.enuf.org.au), a reference to the anti stigma and discrimination campaign orchestrated by Living Positive Victoria.
Late last year, NAPWHA in collaboration with the National Centre in HIV Social Research produced a timely report titled The HIV Stigma Audit Community Report (2012). It found that sex partners were by far the leading cause of HIV stigma when measuring feelings of being avoided, rejected or excluded.
Some people who struggle with their HIV diagnosis sometimes describe feelings of being ‘dirty’ and not being able to get ‘clean’, which is compounded by the fact that HIV is not currently curable (although we’re getting much closer). So in the context of dating websites, someone reading ‘clean, you be too’ is read like a social obituary from which there is no escape or redemption.
In times past, some people with HIV would have died carrying the burden of disempowering labels like ‘dirty’, ‘unclean’ or ‘toxic’. Now that life expectancy is approaching normal (and may well already be there for most), do you really think confident, empowered people with HIV are going to put up with stigmatising crapola for 40 plus years? I think not!
Who can really make any claim to be ‘clean’ when the Human Papillomvirus (Genital warts) or Genital Herpes are both endemic within our communities?
Real life scares from Avian to Swine flu have catapulted many of us into an infection conscious world, were anti-bacterial hand washes are now becoming disturbingly common place
(how did we ever survive!). Looking through your laundry cupboards, you may find a substantial arsenal of chemicals weapons ready for deployment. The warfare against germs is never ending. However, sex can be filthy and you can fully protect yourself without blaming, shaming, avoiding or rejecting people that have a virus.
When it comes to HIV there are easy sensible things you can do. Be open, accepting and inclusive, so people who have HIV feel comfortable letting you know and you can choose more easily the horny sex you can have together without angst or harm. Many argue that the safest sex you can have is with someone who knows their HIV status, as they demonstrate a capacity for self responsibility and care for others. If your play mate is fucking around bareback like you are (untested, or not often enough), probably best to still use a condom, or get some HIV medication from your doctor/emergency department, Post Exposure Prophylaxis (PEP) to prevent/reduce the likelihood of HIV acquisition. Do it fast within 72 hours or don’t bother (the effectiveness of treatment diminishes every hour you wait).
So how can you be a squeaky clean whore year in year out? Many believe posting the demand on your profile that you will only meet other similar squeaky clean whores is worthwhile. The same people also believe that requests to not have people; wink at you, or not contact you without a photo, not have any baggage, be hung, fit and be between a certain age range, works brilliantly …not!
After everyone has meticulously read your profile and complied with your instructions and self selected out if appropriate (who are you kidding?). You can be sure many will assume, that no symptoms right now equals squeaky clean (some STI’s can be asymptomatic but active), after all Sydney last weekend doesn’t count because memory gets hazy very quickly, including recalling how much bareback sex you may have had in between tests .
Be real, can you really claim to be ‘clean’ after any bareback sex? When did your play mate last get tested for HIV? Or are you assuming that he’s ‘clean’ because he only plays with other ‘clean’ guys? Most regular HIV tests actually test for antibodies to HIV (which can take three months to be detectable after a potential exposure), meaning that your partner could have HIV and not know it. Condoms, as HIV prevention still easily trumps regular testing regimes, or unaware and not ‘fully honest’ hot horny men.
Starting 2013 I reflected on how do we make being gay better? Reclaiming ‘marriage’ is another step forward in this direction. Part of the solution may also lie in dropping the labelling of same sex as dirty, or that people with HIV are dirty, or the person that has more sex than you is dirty. As people with HIV reclaim ‘clean’, we do it not only for ourselves but for everyone who has ever experienced prejudice of this kind.