Positive Living Summer 2013-2014

PositiveLiving A MAGAZINE FOR PEOPLE LIVING WITH HIV l SUMMER 2013-2014

W E N E TH S T S I V I ACT TREATMENT AS PREVENTION: PLUS WHAT DO WE THINK OF IT SO FAR?

PositiveLiving ISSN 1033-1788

eDItor Adrian ogier

(adrian@napwha.org.au) ASSoCIAte eDItor David Menadue ASSIStANt eDItorS Stevie bee, Vicky Fisher CoNtrIbutorS Daniel brace, Jae Condon, Jane Costello, Sarah de graaff, Cipriano Martinez, Jenny McDonald, Neil McKellarStewart, David Menadue, Alex Mindel, Dr louise owen DeSIgN Stevie bee Design Positive Living is a publication of the National Association of People With HIV Australia.

Positive Living is published four times a year. Next edition: March 2014 Positive Living is distributed with assistance from

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n Positive Living is a magazine for all people living with HIV in Australia.

Contributions are welcomed, but inclusion is subject to editorial discretion and is not automatic. the deadline is 21 days before publication date. receipt of manuscripts, letters, photographs or other materials will be understood to be permission to publish, unless the contrary is clearly indicated. n Material in Positive Living does not necessarily reflect the opinion of NAPWHA except where specifically indicated. Any reference to any person, corporation or group should not be taken to imply anything about the actual conduct, health status or personality of that person, corporation or group. All material in Positive Living is copyright and may not be reproduced in any form without the prior permission of the publishers. n the content of Positive Living is not intended as a substitute for professional advice.

CoVer IMAge: exPoSItIoN by rAF

At this year’s IAS conference in July, Dr Timothy Henrich reported on the progress of the two ‘Boston patients’, both of whom received chemotherapy and stem-cell transplants for blood cancer lymphoma — one three and the other five years ago. Now, after ceasing antiretroviral treatment for fifteen and seven weeks respectively, neither man has any trace of HIV in their blood.

Many in the HIV sector are now using the term ‘remission’ instead of ‘cure’ as a more accurate way of describing these results. Most are unwilling to as yet guarantee that HIV can be eradicated from every cell in the body for all time.

Nevertheless, if you add together the ‘Berlin patient’, the ‘Mississippi baby’ and these two ‘Boston patients’, the world of HIV is now tracking the progress of four patients who have potentially been cured of HIV. Unlike the ‘Berlin patient’ (Timothy Brown), the excitement surrounding the ‘Boston patients’ can be justified by two key differences. According to Dr Henrich, they undertook ‘gentler’ chemotherapy, plus the stem-cell transplantation they received was not from a donor who had naturally resistant immune cells to HIV (found in less than 1% of the population). This means that a potential HIV cure has just

Will our cure be next?

Pondering the latest cases of HIV cure, Cipriano Martinez wonders when we’ll start hearing about the ‘Australian patient’ become safer (i.e. less chemo) and more widely applicable to everyone (i.e. easier to find compatible donors).

One hypothesis proposed by Dr Henrich as to why the gentler chemotherapy and simpler stem-cell transplantation worked is that the donor immune cells were sufficiently different from that of the host immune cells; this led to the donor immune cells bumping out and eliminating the host’s immune cells where HIV was hiding.

HIV eradication research will require further research and willingness by patients to place their health and their lives on the line. Not all of these will be personal success stories.

There was little publicity surrounding the case of 12-yearold Eric Blue. On 23 April this year he received an experimental

treatment at the University of Minnesota for HIV and leukaemia but died nine weeks later. The donor providing his stem cells was not only compatible but also had the advantage of immune cells genetically resistant to HIV. While not yet conclusive, testing has revealed that Eric had cleared both his HIV and leukaemia.

According to his doctor Michael Verneris, Eric ‘absolutely needed to have this transplant’.

Unfortunately, he 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. That is why it is important to acknowledge the pioneering medical contribution of people like 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.

It is important to also acknowledge the doctors who are prepared to step out of their standard treatment guidelines and explore options for improvements in HIV treatment and prevention.

Innovation is rarely riskless. To the courageous people, like Eric Blue, who accept the risks and nevertheless embark on the journey to advance human medical science, we salute you.

The International AIDS Society conference comes to Melbourne in July 2014. Progress on all these potentially cured patients will undoubtedly be widely sought and reported. How wonderful if we could lay claim to our own HIV-cured Australian? n Cipriano Martinez lives in Perth and is NAPWHA’s new VicePresident. He writes a regular column on living with HIV for Out In Perth and this article first appeared in the September 2013 edition.

Opposites Attract needs more couples The Opposites Attract Study is looking to find out how much treatment and viral load affects HIV transmission amongst serodiscordant gay couples.

‘We have research amongst heterosexuals showing that the risk is reduced by 96% when the HIV positive partner is on treatment,’ says Professor Andrew Grulich of the Kirby Institute.

‘But there is no equivalent data on gay men,’ he said.

This globally unique research

project is being conducted in Sydney, Melbourne, Brisbane and Cairns. So far 90 gay couples have enrolled, most of whom live together, although some couples simply have regular sex with each other and are not in committed relationships. Some have been having sex with each other for just a few months and others for more than five years. About half are monogamous. Participants can either be on treatments or not but, so far, the majority are

taking treatment.

‘Participants have found it easy to be part of the study,’ says Professor Grulich. ‘And most have been motivated by wanting to help.’

One participant commented that he was happy to support research, especially when the impact of the study is minimal.

‘I want to do anything I can to prevent anyone else from contracting the virus,’ he said.

Opposites Attract urgently

CONTRIBUTORS (FroM leFt)

needs more men in serodiscordant sexual relationships. They can enrol at the HIV positive partner’s regular HIV clinic. Both partners are then followed for two to four times each year for blood and STI tests and to complete short questionnaires. HIV positive men in Sydney can also participate in a sub-study looking at HIV viral load in semen. n For more information call 1800 129 073 or visit OppositesAttract.net.au

Daniel Brace introduces us to the new breed of HIV activists l Jane Costello pays tribute to a friend and mentor Sarah de Graaff demonstrates how yoga breathing can alleviate stress l Cipriano Martinez would like to see the ‘Australian patient’ on the list of cured cases Jenny McDonald offers a gluten-free muesli containing multiple superfoods l Neil McKellar-Stewart analyses the safety of PreP and reports on anal cancer and ageing from the 2013 Australasian HIV and AIDS Conference l David Mendue asks around to see what we really think of ‘treatment as prevention’ Alex Mindel looks back at past IAC themes and forwards to AIDS 2014 l Dr Louise Owen offers advice on using chemicals to enhance sex

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THENEWS

Novel agents are Why HIV is ageing coming along nicely

After HIV fuses with the membrane of a CD4 cell it releases its capsid into the CD4 cell. An HIV capsid is a coneshaped protein shell that contains the genetic material that HIV needs to replicate: two single strands of RNA and three enzymes—reverse transcriptase, integrase and protease. Most antiretroviral treatments (ART) are named after and classed according to which of these enzymes they inhibit.

Once inside the CD4 cell, the capsid goes through a process of uncoating during which its shell dissolves, releasing the enzymes and RNA strands. The ‘reverse transcriptase’ enzyme converts viral RNA into viral DNA, making the genetic material of HIV compatible with human genetic material.

The process of copying genetic material is called transcribing (as in transcribing or copying something written). In humans, most reproduction of genetic material starts with the double

date in laboratory studies’.

Turning to NNRTIs, and MK1439 has several attractive properties, including activity against HIV that has developed resistance to older NNRTIs (efavirenz and nevirapine, for example).

Novel agents include Cenicriviroc, which works as a CCR5 entry inhibitor (like maraviroc) but also blocks the CCR2 receptor.

Another, BMS-663068, interacts with HIV's gp120 envelope protein and interferes with binding to CD4 cells. Its mechanism of action resembles that of enfuvirtide (T20, Fuzeon) but it is an oral pill rather than a daily injection.

Researchers are also working on a new type of integrase inhibitor, known as lens epithelium-derived growth factor inhibitor or LEDGIN, that interferes with a protein that HIV uses to integrate its genetic material into host cell chromosomes.

While daily injections are clearly problematic, many people would be willing to take a single monthly or quarterly shot for HIV maintenance therapy or perhaps for pre-exposure prophylaxis (PrEP). Two such injectables are proceeding through the development pipeline: TMC278LA, a long-acting form of rilpivirine (Edurant), and GSK1265744, a new integrase inhibitor that is also being tested as an oral medication.

In the near future we will see more fixed-dose combinations and single-tablet regimens, including the first co-formulations containing HIV protease inhibitors and the first to incorporate abacavir/3TC (rather than tenofovir/emtricitabine) as the NRTI components. n First reported at the 14th european AIDS Conference in brussels in october. A full summary is available at aidsmap.com/page/2782641

The reverse transcriptase inhibitor stranded DNA which separates into two strands of RNA that then goes on to make two new strands of DNA. Because HIV replication begins with a single strand of viral RNA to produce viral DNA this process is reversed, giving the name of this stage of the lifecycle reverse transcription.

This stage can be blocked by HIV antiretroviral treatments that belong to a class of treatments broadly called Reverse Transcriptase Inhibitors (RTI).

This class can be further divided into two groups: Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs/ NtRTIs) These treatments are incorporated into the chains of genetic material that reverse transcriptase is trying to build.

They cause what is known as

TREATMENTS UPDATE PHoto ruSSell KIgHtley

HIV treatment in the coming years will include novel antiretroviral agents and new formulations such as long-acting injectables, as well as new strategies aimed at improving adherence and minimising side-effects.

Two new pro-drugs of tenofovir that look very promising are tenofovir alafenamide (TAF) and CMX157. Tenofovir, a component of widely used co-formulations Truvada, Atripla and Eviplera is highly effective but can cause kidney and bone toxicity in rare cases. Now in phase 3 testing, TAF produces higher drug levels in cells but allows for lower dosing with less effect on the kidneys and bones.

CMX157 also potentially carries less risk of kidney toxicity and its long half-life in a phase 1 trial suggests once-weekly dosing may be possible.

Another NRTI in the pipeline, EFdA claims to be ‘the most potent antiretroviral reported to

Monocytes are immune cells that activate to deal with foreign bacteria and other stresses at the cellular level. However, in older people they change and start to express a range of molecules from their surfaces that contribute to an increased risk of blood vessel disease and inflammation.

These changes result in older people being less able to deal with common infections and pathogens. It also puts them at increased risk of inflammatory diseases such as cardiovascular disease, rheumatoid arthritis, type 2 diabetes and possibly kidney and bone disease.

Last year, researchers from the Centre for Virology at the Burnet Institute in Melbourne looked at how these age-related changes occur in people with HIV. In one study they compared reasonably young men with HIV (median age around 40) with young men (median age 28) and older men (median age 72) both without HIV. They found that the men with HIV had markers in their immune system which were very similar to those found in older men. In fact, the men with

Detail of the HIV life cycle showing the HIV capsid releasing its genetic material into the human CD4 cell chain termination, halting the replication process. Treatments in this group include: n abacavir (ABC) Ziagen n emtricitabine (FTC) Emtriva n lamivudine (3TC) n stavudine (d4T) Zerit n tenofovir (TDF) Viread n zidovudine (AZT) Retrovir

WITH JAE CONDON

Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) NNRTIs are not incorporated into the chains of genetic material but instead work by attaching to reverse transcriptase itself, causing a reaction that prevents the enzyme from working. Treatments in this group include: n efavirenz (EFV) Stocrin n etravirine (ETR) Intelence n nevirapine (NVP) Viramune n rilpivirine (RPL) Edurant Because reverse transcription happens quickly, makes many new copies and does not have the same built-in proofreading properties that human genes do,

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HIV who weren’t on treatment had markers that were even higher.

Treatment seems to reduce the immune activation of monocytes but doesn’t bring it down to the levels seen in younger HIV negative men. Those with HIV had monocytes, which like those of old men, struggled to deal with infections and kill foreign pathogens.

A similar study of women with HIV found that they had elevated blood plasma levels of markers of monocyte activation which were found in HIV negative women 1014 years older. Their markers of immune activation increased faster and reached higher levels than women without HIV. These studies contribute to the growing knowledge that HIV not only causes loss of T-cell numbers and function but that it also causes dysfunction in other parts of the immune system used to fight cancer cells and chronic viral infections such as the herpes viruses (shingles, Epstein-Barr and cytomegalovirus).

Sensible things that people can do to minimise this immune ageing includes receiving treatment as (CoNtINueD PAge 4)

this stage of the HIV lifecycle is extremely error prone.

Sometimes this can result in the creation of strains of HIV that are resistant to some Reverse Transcriptase Inhibitor drugs.

Fortunately, modern ART is so highly effective in blocking multiple stages of HIV replication (including reverse transcription) that resistance rarely occurs, provided treatment is taken as prescribed.

Whether you are just starting or have been taking treatment for some time, it is always useful to check in with your doctor or pharmacist about the best time to take it — with or without food, together or separately from any other medication or supplements.

And always tell your doctor if you are having any difficulties with your current regimen. They want to know and will have ideas to help.

Conversely, if your treatments are working well, consider sharing your story on our Facebook page: facebook.com/positivelivingmag

THENEWS Why HIV is ageing CoNtINueD FroM PAge 3

early as possible to reduce immune activation; and making lifestyle choices which will not add to this burden of inflammation. These include quitting smoking, adopting antiinflammatory diets, reducing the incidence of infectious diseases such as STIs and dealing with life stresses and depression.

Meanwhile research progresses on possible use of antiinflammatory medicines such as rosuvastatin and aspirin to reduce monocyte activation. n references are available online at napwha.org.au/pl Neil McKellar-Stewart

Darunavir is now one pill If you’re on darunavir (Prezista), the next time you fill your script, expect to receive a pleasant surprise.

400mg tablets have now been replaced by 800mg ones, so you now only need to take one a day, along with the rest of your combination.

‘This now brings Prezistabased regimens down to the same number of pills as patients might take with other protease inhibitor regimens’, says Professor Don Smith from the Albion Centre.

Here’s to the day when we won’t need a world AIDS day.

Anal cancer: early diagnosis is key Reports on anal cancer figured in a number of presentations and posters at the recent Australasian HIV and AIDS Conference in Darwin.

In any year, 78 in 100,000 HIV positive gay men will be diagnosed with anal cancer. Some have suggested there is a ‘perfect storm’ of factors that have come together within this group to produce these relatively high rates: increasing age; persistent HPV infection (and reinfection from receptive anal sex with multiple partners); immune suppression caused by ongoing HIV persistence; a higher prevalence of high-risk HPV types; faster rates of progression from low-grade pre-cancerous lesions to true cancers; and very high levels of tobacco smoking.

Anal cancer is almost always associated with persistent highrisk type human papillomavirus (HPV) infection. There are over 100 different HPV genotypes; however, HPV16 is most often associated with anal cancer.

Prevention can proceed along three lines.

Primary prevention is possible by the vaccination recently licensed for use in Australia. A recently published randomised trial proved that vaccination of young

SPANC is a Sydney-based study of the natural history of anal HPV infection and associated abnormalities in homosexual men aged 35 and older. the study aims to provide critical information that will inform the design of anal cancer prevention programs. over 360 men are currently participating but more are needed. Although open to all homosexual men aged over 35, SPANC needs more HIV positive gay male participants.

At five visits over three years, men receive anal cytology and HPV tests, as well as high-resolution anoscopy examination of their anus.

For more information about the study or how to enrol, please visit spanc.org.au or call 1800 477 262 (1800 4SPANC).

HIV negative gay men will prevent anal cancer precursors. In 2013, free vaccination of school-aged boys began in Australia. However, this will not work for older men living with HIV, in whom HPV infection has a firm hold.

Secondary prevention consists of screening for HPV infection and identifying the precancerous lesions associated with HPV infection and treating them. But there are issues.

In the ongoing Study of the Prevention of Anal Cancer (SPANC), based in Sydney (see box), high-grade anal intraepithelial neoplasia (HGAIN) is found in around 40% of gay men with HIV;

however, the progression rate to outright cancer is very low. Maybe only one in 400-600 per year will progress, therefore routine screening would identify large numbers of men with HGAIN but many of whom will not progress to outright anal cancer. Plus, it is now believed that high rates of HGAIN spontaneously regress.

As well, there are no agreed treatment modalities for treating HGAIN. Recurrence rates after treatment are very high, and it has yet to be demonstrated that treating HGAIN leads to reduced incidence of anal cancer at a population level.

Collecting representative cells (cytology) from the convoluted surface of the anus requires time

by Alex MINDel Since it was first held in Atlanta in 1985, there have been numerous significant International AIDS Conferences involving the PLHIV community. AIDS 2014, however, is the first to be held in Australia and provides a significant opportunity for advocacy on all levels.

LOOKING BACK

Remember to like us at facebook.com/ positiveliving mag and receive all the latest HIV news.

Study of the Prevention of Anal Cancer

AIDS 1988 in Stockholm highlighted the ‘Face of AIDS’ and provided a forum for PlHIV and civil society to engage in the debate. San Francisco in 1990 saw huge protests in response to the epidemic and a lack of effective treatment. AIDS 1993 in berlin tackled discrimination with the motto ‘tear down the walls’.

Vancouver 1996 celebrated the arrival of highly active antiretroviral therapy (HAArt) and the dramatic decrease in

UPDATE mortality and morbidity. AIDS 2000 in Durban was the first held in a developing country and the ‘Durban Declaration’ confirmed the overwhelming scientific evidence about the origin of HIV. AIDS 2004 in bangkok saw the global Village open to the general public, connecting local communities and researchers, with health professionals and leaders taking part in the formal conference. AIDS 2008 in Mexico City focused on the need for action at all levels for access to health services, and also to end stigma and discrimination. AIDS 2010 in Vienna focused on human rights, and ‘towards the cure’ was the theme in Washington for our last conference in 2012.

LOOKING FORWARD the theme for AIDS 2014 is ‘Stepping up the pace’, which recognises that the HIV response has seen renewed optimism over the past few years with substantial gains made in cure and vaccine research, growing numbers of people receiving antiretroviral treatment, falling rates of infection and encouraging evidence of the beneficial effects of treatment as prevention.

However, this progress has not been universal. Many regions are still struggling to address their epidemics against a backdrop of ever-increasing infections, challenging political

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and skill. Similarly, highresolution anoscopy (HRA) to study the interior surface of the anus requires specialised equipment, time (perhaps 30 minutes per examination) and well-trained expert staff. HRA facilities are only available in a few of the major capital cities.

For secondary prevention to progress, much more effective ways will need to be developed to both screen for and treat HGAIN. This leaves tertiary prevention, i.e., detecting and effectively treating cancer in its early stage.

Prognosis worsens as the size of the cancer progresses, so if identified when the cancer is less than 1 cm there is good prognosis for effective treatment.

Good evidence from the Anal Cancer Examination (ACE) study shows that annual digital anorectal examination (DARE) may be effective in identifying many anal cancers early so that they can be effectively treated.

The risk of anal cancer is small but significant for PLHIV. The message is that screening and early treatment require more attention from both PLHIV and their clinicians. n references are available online at napwha.org.au/pl Neil McKellar-Stewart environments, and barriers to adequate funding and effective implementation.

World AIDS Day 2013 is the official launch of the AIDS 2014, with a series of events being held around Melbourne. It is also the date when abstract and event submissions open.

Start thinking about the ways you can participate and be part of shaping the PlHIV response at the conference.

Find out more about AIDS 2014 through the NAPWHA AIDS 2014 Newsletter. Follow the links under NAPWHA News at napwha.org.au n Alex Mindel is NAPWHA’s Communications and Membership Services officer. He is also a member of the Melbourne youth Force, which is organising the youth component of the global Village at AIDS 2014.

THENEWS

The truth about Truvada Truvada is a combination of two antiretroviral (ARV) drugs: tenofovir (TDF) and emtricitabine (FTC) and is one of the mainstay backbones for treating people living with HIV. It is highly effective when used with other ARVs and has very few short-term side effects.

Truvada has also been investigated in several major clinical trials as the combination for use in people at high risk of acquiring HIV. These include the HIV negative partners of PLHIV, people who inject drugs (specifically those who may share injecting equipment) and gay and bisexual men who have unprotected anal intercourse with multiple partners.

The use of pre-exposure prophylaxis (PrEP) is not new. Childhood vaccinations and antibiotics to prevent malaria while travelling or a staph infection while in hospital are all now common practice.

Truvada is regarded as an effective drug for PrEP because tenofovir has a long halflife and concentrates particularly in the mucous tissues within the rectum; while FTC concentrates in the genital tissues. So, together they act to reduce the risk of HIV transmission through sexual activity.

Three PrEP demonstration studies (in Victoria, Queensland and NSW) are underway to see how oral PrEP might be implemented in Australia.

Safety is an obvious issue for those considering enrolling.

As noted above, Truvada has a very good safety profile. Soon after commencing some people experience mild side effects including diarrhoea, nausea, headache or fatigue. All of which generally resolve within a month.

Of more concern are metabolic changes resulting from long-term use. Tenofovir is excreted through two separate parts of the kidney and has been shown to cause slight changes in the structure and function of what are termed the proximal tubules. This may result in lower than optimal levels of phosphate and other molecules needed for healthy bone development and maintenance. Such events are uncommon and in their severest form exceedingly rare.

The vast majority of PLHIV taking tenofovir (which is also in the single tablet regimens Atripla and Eviplera) suffer no significant decline in kidney function and continue to maintain good bone health.

Lifestyle factors such as smoking, low calcium and vitamin D, along with increasing age and HIV infection itself, probably contribute as much as anything else to any losses in kidney or bone health.

The results of the only large-scale controlled trial investigating the safety of

PHoto CHAoSS

Now that it’s being offered as PrEP, Neil McKellar-Stewart thought it was time we looked a bit closer at the big blue pill.

Truvada as PrEP have recently been published. The study found that over two years, there were no significant differences in measures of kidney function between those who took PrEP and those who did not. Adherence was high and the only seroconversions in the study were those in the non-treating arm. All this was as expected and good news.

As part of the screening process, a subset of men had their bone mineral density (BMD) measured at their hip, lumbar spine and femur. A few were found to have reduced BMD already and were excluded from the trial. Interestingly, amphetamine or inhalant use was associated with a five-fold increased risk of decreased BMD. Conversely, use of calcium, multivitamin and vitamin D supplements appears to reduce the risk by 70%.

Among those remaining men who received Truvada over two years, there were small but significant decreases in BMD compared with those who received the placebo. These losses occurred mainly in the first 12 months and are consistent with other studies.

The conclusions that can be drawn from this study and knowledge we have of how TDF is processed through the kidneys are: n Adverse effects on kidney function are rare and probably of very limited significance for people taking TDF over 24 months. n Reductions in function of the tubules in the kidney are associated with use of TDF. Non-steroidal anti-inflammatory drugs (NSAIDs) and treatments for herpes (acyclovir) may increase concentrations of TDF in the tubules and may pose an increased risk of kidney damage. n For this reason, it is important to

confirm good kidney function prior to use. This is measured by standard blood and urine analysis. n Pre-existing risk factors for poorer kidney health need to be investigated by your doctor. These include being overweight, over 50 years, or a smoker, having raised blood pressure (hypertension) or diabetes. n Significant decreases in BMD may occur in the first 12 months of TDF use. n People considering using Truvada for PrEP should ensure the best possible bone health and should be screened for vitamin D status. Use of calcium and multivitamin supplements may ensure that bone health is good before commencing TDF and during its use.

People with a history of bone disease or low-impact bone fractures should obtain medical advice before using TDF/FTC. n Modern ARVs including Truvada are generally safe for most people; however, all of them have some side effects, and for this reason should not be used without prior screening and ongoing medical care. n Adherence is vital. PrEP must be taken consistently to ensure that HIV infection does not occur. We know that the drug works if it is in sufficient concentration in the blood stream. If sero-conversion occurs and it is not identified, it is possible that HIV may develop resistance which may seriously complicate future HIV treatment.

The USA is the first country to license Truvada as PrEP for people at high risk of acquiring HIV. It’s important to note that no drug is currently licensed in Australia for PrEP use. Some gay men and others at high risk of acquiring HIV may choose to obtain generic versions from reputable overseas suppliers of online HIV medicines.

People in this situation can be assured that the risk of adverse events is low; however, they should ensure that they discuss their use with their doctor and that they receive ongoing monitoring of their general health (including HIV/STI screening and kidney function).

Because Truvada is licensed for PrEP in the USA, there are a range of authoritative, reliable websites providing information on its use. n Centers for Disease Control: cdc.gov/hiv/prevention/research/prep/ n Project Inform: projectinform.org/prep/ n Center for AIDS Info and Advocacy: centerforaids.org/pdfs/ritawinter2012.pdf n references are available online at napwha.org.au/pl

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Peter taylor An extraordinary life When asked to write a eulogy about someone, it is often difficult to know where to start. All the more so in Peter's case because he was such an outstanding and unique personality whose enthusiasm and appreciation of life was boundless. No tribute will ever do justice to the extraordinary life lived by such a remarkable man.

I feel extremely honoured and privileged to have known Peter whom I met whilst living in New Zealand when we both trained as positive speakers.

He was an amazing motivational speaker and I have never met or respected anyone like him. Peter was an inspiration to all. He lived for decades with the rare combination of HIV and leishmaniasis, the second of which he contracted while in barcelona as an equestrian coach at the olympics. Peter was not expected to survive more than about twenty months with leishmaniasis and HIV. the fact that Peter lived for another twenty-one years was testament to his incredibly strong will and character, and his determination to live and never postpone joy.

His illnesses never defined or restricted him. HIs phenomenal portfolio of achievements whilst living with this dual diagnosis was astonishing and prolific. Peter was a dear friend and mentor, a motivational speaker and author, an international equestrian and coach, talented chef and restaurateur, bar owner and fabulous gay icon. le brie restaurant was the leading restaurant of its time in Auckland, and Surrender Dorothy’s bar was a muchloved institution on Ponsonby road.

When his medical interventions had finally taken an unacceptable toll, Peter’s optimistic spirit expressed itself in his decision to face death as he had faced life. In Peter’s words: ‘like everything else, I will go with the flow and manage with business-like strategy and enjoy the moment.

‘Full of uncertainties has been part of the excitement of living. I expect my passing will be equally as exciting. the lessons will continue to surprise and be full of wonder beyond my understanding at this conjuncture in time.’

He was a lovely, lovely man.

Jane Costello

Our history of HIV activism is certainly a remarkable one.

Australia owes much to those committed individuals who at first challenged and then worked together with government to bring about change. The privileges people living with HIV enjoy today are due largely to those early HIV activists.

Sadly, many of them are not around anymore and of those who are, only a few have the energy to act up. Some are now senior and respected professionals in their own fields or within the community sector that emerged as a result of their struggle.

But what of the new generation of HIV activists? Have we really become a ‘slacktivist nation’? Are we all ‘armchair activists’, passively and virtually ‘liking’ every new cause? Are today’s self-proclaimed activists no more than professional marketers wanting to flex their multi-platform social media skills to improve their own employment opportunities?

Certainly, there have been seismic shifts in the way people now congregate, communicate and relate to issues. Networks are no longer limited by geography or post-reporting. Journalism has evolved and we now all have the ability to report news and to be followed. People can now be mobilised almost instantly. We may be physically disconnected, but we can all link-in to virtual community networks of likeminded people.

And if we look outside of HIV, for a moment — at gay marriage or refugee asylum, for example — we can see the attributes that we associate with traditional activism. We see communitydriven, well-attended protests and rallies often mobilised by social media. They prove that, when necessary, we are still prepared to front-up and demonstrate our commitment to a cause.

While there are still issues within the HIV community

W E N THE S T S I ACTIV worthy of a rally — stigma, discrimination, treatment access, prevention, gender inequality and inter-generational challenges to name a few — they do appear less urgent than those we fought for in the early days; when HIV treatments were being withheld and lives were at stake.

But across the globe there are many individuals working hard to change opinions and attitudes, to break down stigma, to increase and improve access to treatments,

to reach out to vulnerable populations and to make sure that governments work harder to protect and care for those living with HIV. And many of these individuals are working here in Australia.

The ENUF campaign (enuf.org.au) is a great example of HIV activism at work today.

This anti-stigma campaign originates from within a government-funded community structure yet receives no direct

government funding itself.

Online, individuals are able to investigate the research that sits behind the ENUF message. They can share their own experience of building resilience in the face of stigma and record the process of change as it happens. They can even sign a pledge to stand up and challenge HIV stigma should they encounter it; in other words, commit to becoming an activist themselves.

The ENUF message has been

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PHoto: exPoSItIoN by rAF

Has HIV activism really slackened off? Daniel Brace believes not and that it is alive and well in Australia.

carried on the streets during Melbourne Pride March — not a ‘hostile’ environment, perhaps, but certainly one where we know HIV stigma exists. Even some of our cherished activists from the early days were there, carrying placards. ENUF has achieved activist status by bringing people together under a banner with a challenge they believe in.

‘Poz Action’ is another example of organisation-based activism. Launched by NAPWHA at the Australasian HIV and AIDS Conference in Darwin, Poz Action is a national movement aimed at reinvigorating the HIV positive community-led response to the current and future needs of all those affected.

Poz Action is about raising the visibility of PLHIV activity and prioritising key areas of advocacy.

The red stamp is now being used by PLHIV organisations across Australia to brand any work they do for the collective good.

For more information visit the Poz Action pages at napwha.org. au/2013/10/22/poz-action But what about outside these organisations?

Positively Fabulous+ is one example. This art project uses mannequins as a device to challenge issues relating to the 17 million women living with HIV worldwide.

‘Activism needs to be about getting attention in a way which challenges and stimulates discussion,’ says Melbournebased organiser Kim Davis.

The campaign is working towards a fashion show of mannequins who have been adopted by individuals and groups to represent and embody the issues of women living with HIV both from Australia and around the world.

Positively Fabulous+ relies on social media to connect people and while its ‘protesters’ are separated geographically they are united in seeking universal change.

But what about local groups focused on local activism and change? Social media is supposed to facilitate civic engagement and collective action, but is there proof that this is at work in our community? The answer is yes.

There are real groups of HIV positive Australians congregating in real time on social media for the purpose of activism. Some of this activist energy has even spilled over into the public arena.

Voices are emerging that are not grounded within the HIV

establishment, but are free agents for social change.

If you’ve ever tuned into SBS or picked up youth press, you might have come across Nic Holas and his ever-growing band of merry men and women from The Institute of Many or TIM (theinstituteofmany.org).

‘One of TIM’s founding principles is to live openly and honestly as an HIV positive person,’ says Nic. The success story he is most proud of is one member who, upon joining, had not disclosed his status to anyone for over two years. Six months later he was appearing on national radio telling his story and using his real name.

‘This is not because we found him and saved him,’ Nic reassures me. ‘The group selfmanages and we have collectively developed a sense of pride about who we are and what we’re living with. While we’re not storming pharmaceutical companies like the previous generation, we are still out there and putting our faces to this chronic illness, some of us very publicly.’

Nic co-founded this group completely free of institutionalised support, although they have partnered up with ACON to present an event called ‘The Social’. BBQs and beach outings may not be rallies or protests, but their members may well be the ACT UP equivalent of today, waiting in reserve for the call to arms.

By acknowledging all forms of activism, great or small, individual or collective, as being driven by committed people wanting to influence change for the better, we will be stronger as a community. Handing the baton of activism onto those willing and ready for the challenge is about succession planning and the ongoing protection of our privileged position.

The latest HIV Futures Seven report shows our continuing need for positive action. While ART means that AIDS deaths are practically unheard of in Australia, nearly one-third of PLHIV still live below the poverty line. Almost 50% of us worry about disclosing our status because of the current laws; and nearly a fifth of us have been diagnosed with depression in the past two years.

These worrying findings may not be enough to galvanise the broader community into rallies or protests, or even coax some of those original activists off their

One of TIM’s founding principles is to live openly and honestly as an HIV positive person ENUF activists congregate after the Melbourne Pride March in February 2013 PHoto: lIVINg PoSItIVe VICtorIA Poz Action tattoos were all the rage at the recent Australasian HIV and AIDS Conference in Darwin PHoto: SCArlet AllIANCe RIGHT The Institute of Many (TIM) co-founder, Nic Holas PHoto: ADrIAN tuAZoN TOP

LEFT

couches and into the streets; but it’s a reminder that there are still areas that need the directed energy of activism to challenge us to do better.

Inside and outside of the effective government-funded community structures, physical or virtual, there is a strong and vocal community of HIV positive

people who are not sitting idle or resting on the laurels of past success.

If we are to improve the lives of all people living with HIV, we need to acknowledge that these new activists are at work right now and to join forces with them.

Activism always needs new voices and new energy.

The nature of the epidemic and Australia’s response has changed. People with HIV are mostly living longer and better and can rise to the challenge of new responsibilities. We are better equipped now than ever before to invest in our own community, to support each other to test and treat and to help

PositiveLiving l 7 l SuMMer 2013-2014

reduce and stop the transmission of HIV. n Daniel brace is a Senior Health Promotion officer at living Positive Victoria. He is openly positive, relatively young and the Sponsorship and Fundraising Chair for the Melbourne youth Force and a proud member of tIM.

A BIT OF BACKGROUND Treatment as prevention (TasP) describes HIV prevention methods that use antiretrovirals (ARVs) to decrease the risk of HIV transmission.1 The concept grew out of the 2011 results of the HPTN 052 study, conducted largely in heterosexual serodiscordant couples, which showed that being on treatment reduced the risk of passing on HIV by 96%.

There are studies underway, including Opposites Attract in Australia, to determine the relative risks for serodiscordant gay male couples; but it is thought from small trials

access to HIV testing (including rapid testing), earlier access to antiretroviral treatment for people with HIV, and making PrEP available for those at high risk.

However, one year on from The Melbourne Declaration and progress is slow. There has been some success in getting governments to support the measures. In August, the federal government signed up to work towards the target of reducing HIV infections by 50% by 2015.

The NSW government has built its recent HIV Strategy around achieving these goals. The recent 10% increase in national HIV

Removing any CD4 count level as criteria for treatment initiation is something we are advocating for in Australia. A proposal to remove the current 500 CD4 restriction on the HIV s100 prescribing criteria was put before the Pharmaceutical Benefits Advisory Committee at their November meeting and we will find out by the end of the year if the submission was successful.

There is a growing base of research evidence that treating earlier can reduce the amount of latent HIV held in reservoirs, reduces the amount of inflammation that HIV causes in the body, and may prevent the

negative partner. Stories like this illustrate why NAPWHA and ASHM are pushing so hard for changes to the PBS prescribing criteria.

More recently, ACON launched the ‘Ending HIV’ campaign, with earlier treatment as one of its key messages.

According to Principal Planner Yves Calmette, the campaign has had the greatest visibility of any campaign by the organisation in recent times.

‘People are taken by the idea that we can end HIV,’ he told me.

‘Many did not believe it before the campaign but were more convinced after watching the

of this in their sex lives,’ says Yves.

The ‘Ending HIV’ campaign has been adopted by NSW Health and is currently being run out elsewhere along the eastern seaboard.

UPPING THE TESTING RATES One of our biggest impediments to achieving a major reduction in HIV diagnoses is that a significant number of sexually active positive men don’t know they have HIV. The Gay Community Periodical Study estimates that the number of gay men not testing regularly is around 13% of

TREATMENTas

PREVENTION What do we think of it so far?

BUZZWORD OR GAME CHANGER? DaviD MenaDue LOOKS AT THE PROGRESS OF TASP AND ASKS AROUND TO SEE WHAT OTHER PLHIV THINK

conducted so far that the rates may be similar.

A Pre-Exposure Prophylaxis (PrEP) study called iPrex also showed that HIV negative people could avoid contracting HIV by taking ARVs themselves.

In November last year all the peak national HIV organisations in Australia signed onto ‘The Melbourne Declaration’ calling on government to support a range of treatment as prevention approaches to reach UNAIDS targets of reducing HIV transmissions globally.2 To do this, Australia agrees to embrace three pillars of treatment as prevention: greater

cases, the largest rise in twenty years, however, does not augur well.

LETTING PEOPLE TREAT EARLIER Australian Guidelines and PBS criteria still only support treatment when CD4 counts drop to between 350 and 500. There are exceptions for those who are older, have HIV symptoms or an HIV negative partner.

In the US however, guidelines were recently changed and now offer treatment to all people with HIV, with stronger recommendations for those who are at higher risk of transmission.

development of other comorbidities (such as heart disease, cancer and osteopenia) down the track.

Several campaigns have encouraged people with HIV to consider treating earlier.

NAPWHA’s ‘Start the conversation today’ campaign last year told people that things are different now and to consult their doctor about the changes.

This campaign had an effect on Chris (see his story opposite) who had just been diagnosed when the ads came out. He talked to his doctor who told him that he did not qualify for treatment, even though he had an HIV

video on our website and reading supporting information,’ Yves says.

ACON’s evaluation did show less understanding about the role of treatments in turning around the epidemic. Nearly 600 people filled in the online survey on the campaign, most of whom were HIV negative young gay men.

While they understood the value of getting testing regularly, few were sure about whether having an undetectable viral load would help prevent HIV. ‘We would like HIV positive and negative guys to understand these issues and make considered judgments about the implications

PositiveLiving l 8 l SuMMer 2013-2014

the gay male population; although other research suggests this may be considerably higher.3 The recent licensing of rapid tests will hopefully improve this.

ACON and the Victorian AIDS Council/Gay Men’s Health Centre have set up communityrun facilities, which operate after hours, and a number of GP practices around the country have set up rapid testing facilities as well. Rapid testing means better access with results given in just thirty minutes. ’We’ve been surprised and delighted with the rapid uptake of a[TEST],’ says Michael Badorrek from ACON. The numbers they

are seeing has exceeded expectations, particularly those who have never tested for HIV before.

‘Clients rate the convenience of the location in Surry Hills, the availability of same-visit results and a more relaxed clinical environment in a service staffed by guys like them as their top three reasons for visiting the site,’ says Michael.

A second rapid testing site will be opening in Newtown soon.

POPPING A PrEP PILL One of the more controversial pillars of treatment as prevention is the use of PrEP. Recent analysis of the iPREX data suggests that PrEP may be as

much as 99% effective if taken seven days a week or 96% effective if taken four times a week.4 The Victorian government recently approved funding for Monash University and Alfred Health to trial PrEP in Melbourne. Truvada will be offered to participants considered at risk of acquiring HIV. Half of the 200 participants who agree to take Truvada over twelve months will be compared to the half who declined to take it.

This form of access trial will help us formulate a much-needed PrEP strategy in Australia.

REINFORCING CONDOM USE The more unprotected casual sex you have, the greater the risk of picking up sexually transmitted infections (STIs), such as gonorrhoea or syphilis. STIs

increase a positive person’s viral load, making them more likely to transmit the virus and can make a negative person more vulnerable to infection.

This is why it is still so important to use condoms in casual sex situations. They are still the safest bet for people in regular relationships, too.

STORY 1CHRIS

didn’t want to put him at risk.

Eventually Chris found an enlightened doctor but during the wait his CD4s had dropped to below 500.

He is grateful to be taking his Kaletra and Truvada and doesn’t find taking pills every day a burden.

‘Unlike some friends who are putting off treatment as long as they can, I think being on treatment gives me freedom from worry, and happiness in the knowledge that I am not going to die.’

Chris is a 35-year-old gay man who was diagnosed with HIV in October last year. At his first test he had a CD4 count of over 900 but a viral load of 444,000. He

Phil regards himself as a sexually adventurous man. He spends a lot

3 STORIES

did his research, spoke to the treatment officer at his local HIV organisation and decided he wanted to go on treatment as soon as possible.

‘I saw a local campaign saying that if you wanted to treat HIV to talk to your doctor,’ Chris told me. He tried three doctors before anyone would give him treatments.

‘They argued that it was too early and my case didn’t fit with the current guidelines. One doctor asked why I would want to put up with the treatment sideeffects. Having read up on the subject I knew the latest drugs have hardly any side effects so I felt I knew more than the doctor.’

Chris didn’t want to continue with such a high viral load and felt the virus was doing him damage at those levels. He also had an HIV negative partner and

STORY 2PHIL

don’t want that on my conscience. Some people say you can tell when another person is also positive, but I have been surprised when some of my assumptions were wrong.

‘I get regular check-ups from my GP for sexually transmitted infections. It is easy to catch these if you have a lot of sex, whether it is unprotected or not. I know that having an STI makes your viral load go up and I don’t want to share any bugs with other people if I can avoid it.’

Phil thinks there needs to be special ‘treatment as prevention’ messages targeted at HIV positive men like him.

‘I am particularly concerned about positive guys who are not

made me a real hermit. I broke off a relationship with my boyfriend at the time, giving him some dumb excuse as to why I didn’t want to see him anymore.

‘Then I got to meet a few other HIV positive women through a peer support group and I was surprised that a lot of them have regular relationships with negative men.

‘Aren’t you afraid of passing on the virus to them? I asked and was told about treatment as prevention and how taking treatments had reduced infectivity to such low levels that it really reduced the risks of transmission.

Most of the women still got their partners to use condoms but

ABOVE LEFT NAPWHA’s 2012 campaign prompted many conversations about the benefits of early treatment PHoto: rAFAl gAWeDA

The Ending HIV campaign is gaining momentum as other states take up the campaign PHoto: ACoN

ABOVE CENTRE AND RIGHT

One year on, and The Melbourne Declaration gets a poor mark of 51%; equal to the estimated proportion of PLHIV currently on treatment — a far cry from the 90% target. Visit Melbournedeclaration.com for the full report.

AT LEFT

of time on sex chat sites and is a regular at a range of sex parties that are advertised on these sites.

‘As an HIV positive man I have to tread carefully with sex in some of these situations. You can go to a party which is advertised for poz men only and find a range of negative guys there. I don’t want to be responsible for infecting anyone else but having a conversation with everyone you meet before sex is also difficult.

‘While I am undetectable and not highly infectious I will usually ask about someone’s status before any unprotected sex happens. I

on treatments and probably have a very high viral load. They can spread HIV so easily, particularly if they are having unprotected sex with people of unknown status.

We all need to do our bit to prevent transmissions.’

STORY 3JULIE Julie has been positive for eleven years.

‘At first the trauma of my diagnosis and the sense of shame I had about picking up the virus

if there were any issues with condom breakages or occasional slip-ups in their safe sex routines, they were less worried than they used to be.

‘So after that I decided to start dating again. I joined an online dating site and I was surprised that I got very few rejections when I would finally tell someone I was HIV positive. Once I explained what it all meant, I have had some successful dates, including one guy who I have been seeing for three months now.’

NoteS

1 www.avert.org 2 See www.melbournedeclaration.com 3 Holt M et al, gay Community Periodic Surveys National report 2010, Sydney, Australia, National Centre in HIV Social research, National Centre in HIV epidemiology and Clinical research, uNSW, 2010 4 grant rM et al, Pre-exposure chemoprophylaxis for HIV prevention in men who have sex with men, New england Journal of Medicine, 2010, 363:2587-2599

PositiveLiving l 9 l SuMMer 2013-2014

DOCTOR LOUISE ANSWERS YOUR QUESTIONS

what’syourproblem?

Robert from Sydney writes: I’ve always had a really healthy sex drive. I enjoy sex . . . a lot. While this isn’t really a problem as such, lately it all seems to be getting much harder. I’ve always used porn and occasionally pills or crystal; but now I find that these things aren’t doing it for me. Or I need to use a lot more of everything to be able to get off.

Dr Louise replies: Sexual arousal is a mercurial thing, Robert. It varies widely from person to person and can fluctuate for each person depending on their circumstance.

Many people enjoy external stimulation to assist with arousal.

Unfortunately, when that stimulant is a chemical agent then awareness of what is ‘normal' arousal can diminish, and this can lead to problems.

Added to this, there are also medical and psychological factors that can affect your interest in sex. Libido can be lower at different periods in your life, during long-term relationships, with some medical conditions and on certain medications.

Depression is a common cause of

lowered libido. Paradoxically, so are many anti-depressant medications.

Do you have trouble getting or keeping an erection or ejaculating? Perhaps something is interfering with the way you function sexually?

Alcohol, some medications, diabetes and cardiovascular disease can all adversely affect sexual performance.

A good place to start might be a full checkup and discussion with your doctor.

But I do want to talk a bit more about your occasional drug use.

Some people find that recreational drugs reduce inhibitions and help them to relax and to experiment with new sexual activities.

But drugs can also alter your ability to take into account the risks involved in these activities.

Many people report they took risks that they normally wouldn’t when they were under the influence of drugs or alcohol.

Sometimes a drug-induced state or ‘session’ can be prolonged and this may interfere with when you take your HIV meds, raising the likelihood of

PHoto SPANISHAlex

Getting off is getting me down

developing a detectable viral load and drug resistance.

Or your recreational drugs and meds may interact badly.

Ritonavir, which is used to boost some protease inhibitors, can also boost the levels of some recreational drugs, particularly amphetamines. There are other dangerous interactions to be aware of. Viagra and amyl nitrate, for example, should never be taken together.

Different drugs have different addictive potential. Crystal methamphetamine is highly addictive and many people find that ‘once in a while’ becomes more often as they find they need more of the drug to get the

desired outcome. This may be your case, Robert, as you say you now need ‘a lot more of everything to be able to get off’.

The addictive nature of recreational drugs means that they often take over people’s lives.

Physical cravings lead to dependence and risk-taking and activities out of character in order to acquire more of the drug. And the effects can often be devastating —physically, psychologically and socially.

If you are concerned, I suggest you seek help. Chat to your doctor and see what options there are.

Things can get out of control quite quickly, so getting in touch with a counsellor could be a life-saver.

There are also some excellent resources you can consult. n iPlan, NAPWHA’s latest resource, has an excellent section (pages 44-46) on how to monitor and change your alcohol or drug use at napwa.org.au/resource/iplan n Drugs: recreation or risk, pleasure or pain, hero or villain?

A resource from Queensland Positive People that explores the many facets of drug-use through the experiences of HIV positive men at qpp.net.au/factsheets terMS

Erectile dysfunction: inability to get or keep an erection suitable for penetration Libido: sexual interest or desire Sexual function: the ability to perform a sexual act Keep your questions under 100 words and email them to pl@napwha.org.au. n Dr louise owen has been working as a Sexual Health Physician in HIV sector since 1993.

Previously a Director of VAC’s Centre Clinic in Melbourne, she is currently the Director of the statewide Sexual Health Service in tasmania. Her advice is not meant to replace or refute that given by your own health practitioner, who is best placed to deal with your individual medical circumstances.

SUPERfoods HIV dietitian, Jenny McDonald travels the country guiding PLHIV towards good health through good nutrition.

Nut and seed muesli Most muesli contains oats — a superfood we’ll talk about another time — but this recipe is gluten-free, so if you are prone to bloating, try this out for a change.

Nuts and seeds are nature’s ‘power packs’. As well as providing a great kick-start for the day, they taste delicious, especially together. Most of these ingredients are superfoods in themselves but I’ll highlight just three of them.

Almonds are a natural source of ‘good’ fats. So, like olive oil and avocados, they can help lower harmful lDl cholesterol and stave off heart disease and diabetes. they are also high in vitamin e and magnesium, which improves blood flow. Keep the skin on to get double the amount of antioxidants compared to the blanched variety. remember that all nuts are high in energy, so if you’re trying to lose weight, use

them in moderation. linseeds are the richest plant source of omega-3 fats, which are essential for keeping your brain, heart, joints and immune system healthy. Due to the high content of plant chemicals known as phytoestrogens, linseeds have also been called nature's answer to hormone replacement therapy. there is ongoing research into the benefits of including phytoestrogens in diets aimed at preventing cancer.

Psyllium is a soluble fibre that helps to bind cholesterol in the gut so that it doesn’t enter the bloodstream. Psyllium can relieve both constipation and diarrhoea, and is used to treat irritable bowel syndrome, haemorrhoids, and other intestinal problems.

l ½ cup sunflower seeds, not ground l ½ cup pepitas l ¼ cup of coconut, flakes or shredded (optional) l ¼ cup of psyllium husks l ½ bag brown rice puffs l 2–3 tablespoons cinnamon

Method

1 Combine all ingredients well and store in an airtight container in the fridge as the ground seeds will last longer.

2 Serve on top of warm MAKeS About A WeeK’S WortH

buckwheat porridge with yogurt and honey or fruit and yogurt.

l ½ cup sesame seeds, ground l ½ cup linseeds, ground l ½ cup almonds, raw or baked

recipe and photo courtesy of billabong retreat (Billabongretreat.com.au)

PositiveLiving l 10 l SuMMer 2013-2014

STATEOFMIND

WHERE THERAPISTS RECOMMEND TECHNIQUES WE CAN EMPLOY TO DEAL WITH THE SYMPTOMS OF ANXIETY OR DEPRESSION

If you’re prone to anxiety or depression, yoga and its breathing techniques can help, says Sarah de Graaff, and will also

Connect mind&body and encouragement of the group, but they tend to be general classes, so the benefits are general. There may also be anxiety around going to a place where there are lots of people you don’t know.

Seeing a teacher privately is one way to avoid this. Oneon-ones will cost more, although some teachers offer discounts.

One practice you can do at home to alleviate depression is Sun Salute or Surya Namaskar. You don’t need a yoga mat, but a slippery surface or wearing socks won’t be helpful. It takes about two minutes to do a full Sun Salute and it is traditionally done in the morning, which for many of us experiencing depression is the time where we look at the day ahead and think ‘how am I going to get through this?’

Surya Namaskar can be slow and gentle or faster and more dynamic and can include different postures. There are

different variations and many are available to watch on the internet. It doesn’t take long to memorise a sequence, which is about 10-12 postures on each side (right and left).

A Surya Namaskar every day or so will have a greater effect on

your mood than one hour-long gruelling class every week. Little and often is the key. Yoga should not exhaust you.

Your practice should give you more energy, not deplete you.

One of the best things you can do for anxiety is to work on your breath. Spend a few minutes every day consciously lengthening your exhalation. Over time, this will affect your everyday breathing and reverse the patterns of fast breathing associated with anxiety and panic.

Breathe in through your nose to a comfortable level then breathe out through your nose and see if you can make the exhale feel longer.

It probably won’t be in the beginning, but with practice it will slowly become longer.

Another method is something I call ‘straw breathing’, where you breathe in through your nose normally then purse your lips as if drinking through a straw and

breathe out through pursed lips.

This will naturally lengthen the exhalation. But don’t strain. Aim for a feeling of smoothness and ease.

Many people I work with report the benefits of breathing practices. Some find they sleep better. One student practices breathing techniques to manage anxiety in her workplace. When she feels a panic coming on she uses her breath and find she has now become less reactive in stressful situations.

Once you have developed a bit of understanding of different practices, you can choose in an informed way what practice you do depending on how it makes you feel. If in doubt, talk to your teacher, they will be more than happy to help. terMS

Dynamic vinyasa: faster movement with breath and a flowing sequence to link poses together Flow: same as ‘dynamic vinyasa’ Restorative: long-held postures supported with pillows and props Yoga Nidra: Deep guided relaxation. Can be done as a class or from a recording at home. n Sarah de Graaff is a yA level 2 yoga teacher specialising in yoga for mental health. She teaches community-priced classes for managing anxiety and depression in redfern as well as working privately with individuals (with government concessions available) at her studio in glebe.

More INFo Herewithsarah.com.au

SIMPLE SALUTE TO THE SUN 2 3 INHALE 4 EXHALE 5 INHALE 6 INHALE

EXHALE

PositiveLiving l 11 l SuMMer 2013-2014

HOLD

7

8 9 EXHALE 10 EXHALE INHALE

PHoto brAINSIl • IlluStrAtIoNS PHIllIP McgrAtH

Yoga has many tangible benefits.

It keeps your body working and this keeps you younger for longer. Regular, gentle exercise will help lower your heart rate, calm your whole system and help you become less mentally reactive.

Moving your body to get energy flowing is the ideal way to get you out of feelings of being stuck. And you don’t need to do this in a pretzel-like way. Some of the most powerful practices have nothing to do with flexibility or stamina or what you can do with your body.

It is possible to have a satisfying yoga practice even if you are tired or don’t have much motivation. This is when a relaxation or ‘Yoga Nidra’ practice can help.

Similarly, if you experience anxiety then fast, movementbased yoga is probably not for you. Choose a restorative practice instead. Simple, focused movement in time with your breath is what is important.

If you are depressed or just feeling sluggish, a more energising, faster-paced class such as ‘flow’ or ‘dynamic vinyasa’ will get your heart pumping. More internal practices are not recommended and any deep relaxations are best done under the guidance of a teacher.

Many studios offer gentle or beginner classes led at a slower pace and these will help you to move the body and maintain energy levels. It is important to find the yoga class that suits you.

Group classes offer the support

NEWS

from the president JANE COSTELLO THIS IS OUR SECOND FEATURE IN

Positive Living, and I am pleased that we are able to broaden our reach out to so many more people this way.

Positive Life NSW was represented at the ASHM HIV Conference In October, where we participated in a number of NAPWHA-led activities and forums, including the formal launch of the Poz Action program.

I was also delighted to launch the new DVD Being Positive at the conference. This resource includes information about healthy living programs, interviews with HIV positive men and women about their own health maintenance strategies, and referral pathways. Endorsed

by NAPWHA and ASHM, we hope the real life experiences of NSW-based PLHIV can be shared with others around the country.

At this time of year it is a full schedule of activities, moving into the end of year with World AIDS Day, and then our Annual General Meeting (AGM) and functions.

If any reader is in the vicinity, you are invited to attend the Positive Life NSW AGM, which will be held at 5.30pm for a 6pm start on Wednesday 4 December at the Adina (see bottom right for details). The Positive Life NSW Christmas Party will be held in the same venue directly after the AGM concludes.

Finally, our World AIDS Day function this year will be launched by the NSW Minister for Health and Medical Research, Jillian Skinner. We want to provide a platform to show the involvement and leadership of PLHIV in the NSW response to HIV. Two of our speakers include Nick Holas and Abby Landy from the NSW Positive Speakers Bureau On behalf of the board and staff of Positive Life NSW, I would like to offer best wishes for the end of year, and new year following.

We will be back in 2014 with more news, so watch this space.

414 Elizabeth Street Surry Hills 2010 ) (02) 9206 2177 or 1800 245 677 ø positivelife.org.au

PositiveLifeNSW

The Quarterly takes off Hédimo Santana reports on the new inclusive social event for people with HIV and their friends in Sydney PLANET POSITIVE RAN FOR OVER A

and played an important role in bringing gay men with HIV together in a relaxed social setting that was safe, free from discrimination and peer-based. A few brave heterosexual men and women with HIV even attended from time to time until it was phased out in July last year.

Inclusive social events for people with HIV have always been difficult to pull-off due to the diversity of people with HIV and the lack of cohesion. Historically, the difficulty has been that by meeting the needs of one group, the needs of the others remained either unmet or only partially met.

In 2010, Positive Life NSW and ACON undertook a review of existing peer support programs in an attempt to better understand their effectiveness. Unsurprisingly, the research found that people had different expectations about what peer support should and could

DECADE

We see the Quarterly as a very welcome addition to the positive peer support programs we offer. deliver and this makes the development of new programs challenging. While some people felt they needed ongoing support, others only sought support in specific circumstances such as after diagnosis, or when starting treatment. Some attended support groups to acquire information and others used them to build and maintain friendship networks.

In an attempt to tackle these issues we developed the Quarterly — a truly inclusive social event for all people with HIV, their families and significant others. We see this as an opportunity for people with HIV to get together and celebrate life in a safe, discreet and friendly environment. We also see it as an opportunity for people with HIV to build and develop friendship

networks, to share information and strategies to enhance their health and wellbeing. Maybe even meet the love of their life.

The Quarterly was launched at the GT Hotel, near Central Station, on Friday 25 October. Some 74 men and women — gay and heterosexual people from all walks of life and living as far as Newcastle, the Blue Mountains and Wollongong — attended.

The evening featured music, food, alcohol/or not, conversations and some giveaways. Mac Cosmetics sponsored the event. I liked the moisturiser and lipstick!

Positive Life NSW believes the Quarterly will become a very welcome addition to the positive peer support programs we currently offer. We are certainly looking forward to the next one early in the new year. It will be in a different venue, most likely a gallery in the Redfern area. Watch out for and come along to the next Quarterly.

Vale: Malcolm Leech IT IS NEVER EASY TO ADVISE of the

loss of a valuable member of our community and it is with great sadness that I report of the passing of Malcolm Leech, aged 57, on 20 September from cancer at the Sacred heart Hospice, Darlinghurst. Malcolm was an ambassador, community advocate, colleague, friend, public speaker, volunteer for Positive Life NSW, board member (2006-2012) and president 2011-2012.

He was a highly experienced community board member and manager in the field of the performing arts and had a strong passion to improve outcomes for people with HIV. Positive Life NSW has benefited greatly from Malcolm’s passion, energy, generous input of time, experience, patience, humour and wisdom to strenghten the

organisation as the peak body for PLHIV in NSW. Malcolm will be very much missed by the board and staff of Positive Life NSW. Our thoughts very much go out to Malcolm’s friends and loved ones.

Jane Costello

Positive Life NSW Annual General Meeting and Christmas Party Wednesday 4 December • 5.30 for 6pm start Adina Apartment Hotel, 2 Lee Street, Sydney (next to Central Station)

PositiveLiving l 12 l SuMMer 2013-2014

news

governance, advocacy and health promotion

The core of LPV’s new strategic plan has been working on a new Strategic Plan that will see the organisation through to 2017.

The new plan has included a number of consultations to ensure all interested stakeholders have had the opportunity to provide input to and feedback on the plan.

The plan identifies three major strategic goals that cover current developments in health promotion and advocacy for people living with HIV, as well as the treatment and prevention of HIV transmission. It also allows for future developments to be incorporated within the organisation’s operations and programs.

The three goals are:

LIVING POSITIVE VICTORIA

l Excellent health promotion programs and services that inform and enable wellbeing l Effective advocacy that supports the individual and community to combat social exclusion l A model community organisation that has sustainable development and excellence in governance and operations.

LIVING POSITIVE VICTORIA livingpositivevictoria.org.au

WhoamIasaleader? richard keane

to attend the inaugural Positive Leadership Development Institute’s Who Am I as a Leader? weekend in the Dandenongs in August.

After a long period of chronic illness and social isolation, I reengaged with the HIV sector and became a board member of Living Positive Victoria. However, I could hear that residual negative self-talk or static that had me doubting whether or not I could again measure up to my previous best standards. I was secretly hoping the self-doubt would be drowned out by my ready openness to participate and to examine my own ideas of leadership and learn from the leadership of others.

I was not to be disappointed.

Each participant seemed to revel in the chance to connect with one another in a respectful and inclusive environment. I was excited and felt energised by the diversity of opinions and ideas.

Slowly each of our individual experiences began to come together and build a real sense of community and what emerged

I WAS FORTUNATE ENOUGH

were many shared points of interest and purpose. I realised that a nationwide collective of community leaders has unlimited potential to provide a valid and valued voice to argue strongly for PLHIV to not only continue to be consulted but to participate at every level in the decisions that affect our lives.

There was much to absorb and take away, much to follow up on, and much to reflect on, but I found it to be totally invigorating. It confirmed my relevance and reminded me of the power of using my “authentic voice” to convey my extensive experience and insights gained from more than twenty years in the sector. It confirmed the importance and

RICHARD KEANE (LEFT) WITH BRENT CLIFTON FROM ACON AT THE LEADERSHIP WORKSHOP

power of publicly and openly sharing my journey of the lived experience of HIV with others. I feel it in the self-confidence I am

These goals continue to consolidate existing paths and define new ones to help guide the future directions for Living Positive Victoria in achieving its vision and mission.

Each goal has defined strategic objectives designed to ensure each goal is achievable and has measurable outcomes for the organisation and ultimately for people living with HIV in Victoria and Tasmania.

We are entering a new era in the treatment and prevention of HIV and Living Positive Victoria is committed to building a robust and effective health promotion advocacy organisation, whose work and activities actively contribute to a world where people living with HIV are recognised and supported as the key force behind ending HIV. Greg Mutter, Treasurer Living Positive Victoria

beginning to exude and engender as I take on the role in the organisation.

I feel I can now better engage other PLHIV to help them find and follow their own passion, fulfil their personal potential and begin to seek out life’s new opportunities rather than remaining oppressed by perceived limitations.

I also feel much more able to identify, strengthen, honour and celebrate both my own individual resilience and that of my community.

Richard Keane is Vice-President of Living Positive Victoria

Living Positive Victoria is a community-based organisation working to advance the human rights and wellbeing of people living with HIV. Its mission is to educate, support and advocate for all Victorians living with HIV, as part of a society-wide response to end the HIV epidemic.

Suite 1, 111 Coventry Street Southbank 3006 ) (03) 9863 8733 ø livingpositivevictoria.org.au

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B

efore taking any supplement, please consult your doctor or pharmacist about the

benefits and risks. Some remedies such as chamomile are generally harmless, while others, like St John’s Wort (which is usually prescribed for depression) can interfere with HIV treatments.

It is also important to research the appropriate dosage as too little or too much of a

Sweet dreamS naturally

particular herb can be dangerous.

In short, know what you are putting into your body and which natural remedies will enhance your health.

Calcium and magnesium Research suggests that disturbances in sleep, particularly the rapid eye movement (REM) phase, one of the deepest levels of sleep, may be related to a calcium deficiency. Calcium promotes the brain’s use of the amino acid tryptophan to manufacture melatonin — a hormone found naturally in the body which can assist a disturbed sleep cycle.

Magnesium is associated with a deeper, less interrupted sleep.

You can increase your magnesium levels by eating dark, leafy green vegetables, legumes, seeds, nuts and whole grains.

If you choose to take them as supplements, aim for a 2-to-1 ratio (half as much as magnesium as calcium).

Chamomile A traditional sleep remedy, chamomile can reduce anxiety, calm the digestive system and relieve muscle tension. It also has anti-inflammatory and antibacterial properties. Chamomile is sold in many forms: tea, oil extracts and tinctures, but is probably best taken as a tea.

However, it can cause allergic reactions in those with plant or pollen allergies.

Hops Hops are traditionally used for making beer but can also be used

Before resorting to the sleeping pills, Jane Costello suggests you try something a little more natural to help you drift off.

as a sleep remedy, usually combined with valerian.

Hops extracts contain a chemical called methylbutenol which acts as a mild sedative. Hops are often used in herbal sleep pillows and tinctures, as well as in teas.

Lavender Lavender has sedative qualities that can increase REM sleep and help lengthen sleep time. People tend to wake feeling refreshed (unlike with over-the-counter remedies). Put a few drops of lavender essential oil on your pillow at night or spritz the pillow with lavender spray. Alternatively you could invest in a lavenderfilled pillow, or add a few drops of lavender oil to a bath at night.

The drop in body temperature after a warm bath also assists

with sleep. Other aromatherapy oils believed to assist with sleeping are ylang ylang and chamomile.

Melatonin Melatonin is a hormone found naturally in the body that maintains our circadian rhythm, the internal biological clock that plays a critical role in when we fall asleep and when we wake.

Studies suggest that melatonin supplements may assist in reducing the time it takes to fall asleep, increase the number of sleeping hours, boost daytime alertness and ease jetlag.

Melatonin has several contraindications. It has been known to aggravate depression symptoms, cause vivid dreams or nightmares, headaches, decreased libido, breast enlargement in men and fertility issues.

Passionflower Like chamomile, passionflower is a safe sedative and is particularly effective for insomnia caused by anxiety, worry or an overactive mind. Research suggests it has a benzodiazepinelike calming action without the side effects. Take it as a tea infusion or a herbal supplement.

Passionflower is often combined in tea mixtures with other calming herbs such as lemon balm, chamomile, catnip and hops.

Traditional Chinese and Ayurvedic medicine In traditional Chinese medicine (TCM) insomnia is often related to kidney energy weakness.

The definition of this is completely different to that used in western medicine although it does refer to internal organs located at the small of the back, and symptoms include lower back pain, tiredness and fatigue.

Practitioners often prescribe herbal preparations such as Eucommia which stimulates Qi in the kidney meridian.

In Ayurvedic medicine, insomnia is often associated with a vata imbalance — vata being that which regulates breathing and circulation.

Ayurvedic treatments for insomnia can include Ayurvedic herbs such as jadamamsi, vacha root and ashwagandha, or the use of therapies such as the application of oil on the head and feet.

Tryptophan Tryptophan is an amino acid that serves as a precursor to serotonin, a neurotransmitter that helps the

PositiveLiving l 14 l SuMMer 2013-2014

body regulate sleep patterns and mood, and has been studied as a possible treatment for insomnia.

However, more research is needed on its efficacy and safety, particularly for pregnant women or those on anti-depression medication.

Tryptophan is found in: red meat, dairy products, nuts, seeds, legumes, soybeans and soy products, tuna, shellfish and turkey.

In some parts of Australia tryptophan is also available on prescription; in others it is sold as 5-HTP and L-Tryptophan.

Valerian Valerian is a medicinal herb that has long been used as a remedy for insomnia. It can help you fall asleep, promote deeper REM time and improve the overall quality of your sleep.

While researchers are divided over how valerian works in the body, it does contain chemicals called valepotriates, which have strong muscle-relaxing and sedative properties. Valerian may also affect levels of the calming neurotransmitter GABA. As with all herbal sleep remedies, valerian doesn’t work for everyone and it has been known to cause headaches and dizziness, and even to act as a stimulant in a small percentage of people. It can also interact with medications such as sedatives and antihistamines, and is not suitable for people with liver disease.

An old favourite is a glass of warm milk before bed. Add one teaspoon of honey for a relaxing pre-sleep drink. Or, alternatively, try an Ayurvedic remedy by adding two strands of saffron or some nutmeg to a cup of warm milk to help get a good night’s sleep. n Before taking any supplements, remember to check first with your health care provider. n Jane Costello is the President of Positive life NSW, the Australian representative to APN+, a Director on the board of NAPWHA and a member of the NAPWHA National Network of Women living with HIV.