PositiveLiving A MAGAZINE FOR PEOPLE LIVING WITH HIV l AUTUMN 2014
What’s ahead? AIDS 2014 • EARLIER ACCESS TO ARVs IMPROVED HEP C TREATMENTS
PositiveLiving THENEWS ISSN 1033-1788
ASSISTANT EDITORS Stevie Bee, Vicky Fisher CONTRIBUTORS Jae Condon, Chantelle Fernando, Paul Kidd, Neil McKellar-Stewart, Alex Mindel, Adrian Ogier, Brenda De Le Piedra, Dr Louise Owen, Luke Rickards 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: June 2014 Positive Living is distributed with assistance from
SUBSCRIPTIONS Free subscriptions are available to HIV positive people living in Australia who prefer to receive Positive Living by mail. To subscribe, visit our website or call 1800 259 666. Contributions are welcome. In some cases, payment may be available for material we use. Contact the Editor. ADDRESS CORRESPONDENCE TO: Positive Living PO Box 917 Newtown NSW 2042 TEL: (02) 8568 0300 FREECALL: 1800 259 666 FAX: (02) 9565 4860 EMAIL: pl@napwha.org.au WEB: napwha.org.au
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.
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All PLHIV can now gain access to treatment treat early. The Pharmaceutical Benefits ‘Estimates are that only Advisory Committee recently around 50% of Australians agreed with a submission from diagnosed with HIV are on NAPWHA, AFAO, ASHM and treatments,’ says Bill Whittaker, the Kirby Institute that all NAPWHA Special Representative. people with HIV should now ‘This is well below have access to the target of 90% antiretroviral drugs By empowering endorsed by the (ARV) through the people to be able Australian Health Pharmaceutical Benefits Scheme. to choose when Ministers last July. ‘By empowering Access will become they want people to be able to available from April choose when they this year. to commence to commence This removes the treatment, we are want treatment, we are previous barrier likely to see an which limited ARV likely to see increase in access for people an increase in treatment uptake,’ with CD4 counts of treatment uptake. he said. 500 and above People with HIV unless they had are encouraged to talk with their clinical symptoms. doctor or consult the NAPWHA A number of countries around website for more information the world have already removed about the benefits of early HIV such restrictions to receiving treatment. ARVs after research showed there were significant long-term health n See page 8 napwha.org.au benefits for PLHIV who chose to
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ACTING EDITOR David Menadue
Vale Nelson Mandela, champion against HIV Former South African president Nelson Mandela, who died on 5 December last year, aged 95, was a true champion in the fight against HIV. Mandela was a passionate advocate about the need for communities to speak out about the disease and made numerous speeches on the subject around the world, including at several World AIDS Conferences. His commitment was shown when he spoke out about his son dying of complications of HIV in 2005. ‘Let’s give publicity to HIV/AIDS and not hide it, because the only way to make it appear like tuberculosis, like cancer, is always to come out and to say that somebody has died because of HIV/AIDS. And people will stop regarding it as something extraordinary,’ he said at the time. Mandela was also instrumental in ensuring that the new South African Constitution launched in 1997 included a clause that made discrimination based on sexual identity illegal, leading to further reforms by later governments, such as the introduction of same-sex marriage. HIV Plus mag.com
Medications too expensive Professor Philip Clarke, an economist from the University of Melbourne, claims that Australia is the third most expensive country in the world when it comes to the price we pay for pharmaceuticals. Professor Clarke claims that this particularly applies to generic drugs after the patent for the original drug has expired.
As an example, Clarke compares the $2 New Zealand pays to the manufacturer for Atorvastatin (the generic name for Lipitor) with the $38 that Australia pays for the same drug. New Zealand also allows a threemonth supply of the drug (only requiring one dispensing fee) whereas Australia only allows for one month’s supply at a time.
There may be several reasons for this, such as a time delay in government implementing the recommendations of the Pharmaceutical Benefits Advisory Committee on the price of generics. Lobbying by pharmacists on the impact to their profitability may also be a factor. In a recent ABC Radio National program, Dr Norman
Swan read out a statement from the federal Department of Health, saying it was misleading to compare countries on price because of different health systems and pricing structures. It was also stated that discounting amongst chemists is currently providing good value for customers in the prices they have to pay for some generics.
CONTRIBUTORS (FROM LEFT) Chantelle Fernando gives useful tips on how to deal with depression l Paul Kidd reports good news for people living with HIV and Hepatitis C co-infection, with many treatments being trialled l David Menadue and Adrian Ogier come up with their Top Ten HIV issues this year l Alex Mindel tells you how to volunteer for AIDS 2014 l Brenda De Le Piedra has some super-healthy thickshakes to try l Dr Louise Owen looks at how to help with facial wasting l Luke Rickards begins a two-part series on HIV-related pain and how to deal with it. PositiveLiving l 2 l AUTUMN 2014
THENEWS
Will you live to 81?
A UK study (UK-CHIC) has found that a 35-year-old man living with HIV today with a CD4 count between 350 and 500 can expect to live to 77 years; if his CD4 count is above 500, this rises to 81 years (not adjusted for risk factors), which is statistically indistinguishable from the general population. The most heartening news regarding life expectancy has been found in studies in some developing countries. In Uganda, for instance, the average lifespan of a 35-year-old man with HIV on treatment is now 51 years, for women it is 67.5 years. This is approaching equivalence with the general population. Another study published in October found that, at age 30, HIV-positive men in the US can expect to live to 77 years and HIVpositive women 81 years. The same study found that, in 1997, average life expectancy, even for those PLHIV taking combination antiretroviral therapy, was only 21 years at age 26 – meaning they could expect, on average, to die at age 47. aidsmap.com/page/2802920 Last spring, Positive Living began a series on the different HIV treatments and how they are grouped by class according to the stage of the HIV life cycle that they block. Firstly, we talked about the entry inhibitor – a class of antiretroviral that prevents HIV from entering the CD4 cell – and maraviroc, the only drug available in this class in tablet form in Australia. Our second article described the role of the reverse transcriptase inhibitor in inhibiting the enzymes that convert HIV RNA into HIV DNA. This process makes the genetic material of HIV compatible with human DNA, allowing HIV to advance to the next state of its life cycle. Once this stage is complete (and if someone is not on treatment) HIV DNA is then inserted or integrated into the DNA of the CD4 cell. The treatments that block this stage of HIV replication are called
Important new integrase inhibitor approved Dolutegravir (DTG, brand name Tivicay®) is an integrase inhibitor that has recently been approved by the Therapeutic Goods Administration for use as an HIV antiretroviral (ARV) drug. It is expected that its Pharmaceutical Benefits Scheme listing as an s100 drug will be made soon. (See Treatments Update below for more on integrase inhibitors.) Results from five separate clinical trials support the effectiveness of DTG in suppressing HIV replication. It joins raltegravir (RAL, brand name Isentress®) and elvitegravir (EVG, brand name Vitekta®) as the other currently approved integrase inhibitors. Useful first-line treatment Three recent trials (the SINGLE Study, the SPRING-2 Study and the FLAMINGO trial) involved treatment-naive people living with HIV. Between them, the
studies indicate that DTG is either superior or non-inferior to efavirenz, raltegravir and boosted darunavir in people who commence treatment with it as part of their HIV drug combination. It appears to have a favourable side effects profile and a superior lipids profile. It also has a high genetic barrier to the development of HIV resistance. Effective for treatment resistance The SAILING Study investigated the use of DTG compared with RAL in 719 PLHIV who had previously received HIV ARVs (but who had not used any integrase inhibitors). These treatmentexperienced patients all had resistance to at least two classes of HIV ARVs, and 49% at commencement of the trial had resistance to three ARV drug classes. At 24 weeks, 79% of people receiving DTG compared with 70% of the RAL arm had
achieved an ‘undetectable’ viral load. Patients receiving DTG had a slightly better increase in CD4 cell increases (144 versus 106 cells/mm³). Fewer participants discontinued due to development of resistance (0.6% in DTG arm versus 10.6% in RAL arm) and there were no major side effects. Similar results were found in the VIKING-3 Study which demonstrated that DTG is effective in successfully treating people who have failed other integrase inhibitor regimes. Dosing is in a small tablet (50mg DTG) once daily for both treatment-experienced and naive patients and its high genetic barrier to resistance makes it an attractive alternative. It affects lipids less than both Atripla® and darunavir/r and has significantly less central nervous system side effects than EFV. We look forward to its PBS listing. n References for this story are available at napwha.org.au/pl.
The integrase inhibitor TREATMENTS UPDATE WITH JAE CONDON
Detail of the HIV life cycle showing the HIV capsid releasing its genetic material into the human CD4 cell
integrase inhibitors. The integrase inhibitor – or more accurately the Integrase Strand Transfer Inhibitor –
prevents the transfer or progression of HIV DNA into human cellular DNA within the nucleus of the CD4 cell. The
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nucleus of a cell is a structure within a cell that contains the genetic information needed to control the cell’s growth and reproduction. Once inside the nucleus, HIV DNA is able to insert itself into the DNA of CD4 cells, and integrate the genetic material of HIV into the genetic material of the CD4 cell. The CD4 cell DNA now contains the genetic material of HIV. As the CD4 now reproduces itself, it unknowingly reproduces new genetic material that HIV needs to continue to produce more HIV. The first integrase inhibitor available in Australia was raltegravir (Istentress) and this was able to treat HIV in people
New resource on talking about HIV
Queensland Positive People (QPP) have launched Talking about HIV, a series of online short films to assist people to come to terms with their diagnosis and to learn more about living with the virus. The website includes locally made films of HIV-positive men and women talking about what
their diagnosis meant to them and what advice they would give to the newly diagnosed; a shared interview between an HIVpositive man and his mother; a look at the benefits of disclosure of status; and clips about treatment and ageing. There are also resources on prevention, dealing with HIV stigma, and accessing support. n See qpp.net.au/Talking starting treatment for the first time as well as those who had resistant strains of the virus. Raltegravir proved to be more highly effective against HIV and had far fewer side effects compared with many other treatments available at the time. Importantly, recent research has shown that people who take raltegravir for five years have higher CD4 counts compared to people taking treatment combinations containing efavirenz. Since the introduction of raltegravir, other integrase inhibitors have been released in the US and are expected to be approved for use soon in Australia. These include dolutegravir and elvitegravir (part of a drug called Stribild). This class is also being investigated for use as Post Exposure Prophylaxis (PEP) and Pre-Exposure Prophylaxis (PrEP). n Share your treatment story at facebook.com/positivelivingmag
THENEWS Are you wasting money on supplements?
Boston patients relapse Two HIV-positive men, treated in a Boston hospital in 2008 and 2010 respectively, were thought to have been ‘functionally cured’ of HIV after being given bonemarrow transplants from uninfected donors. After several years of being apparently ‘virusfree’, both men decided to stop antiretroviral treatment (ARV). Recently, however, it was reported that both men had seen the virus return after 12 and 32 weeks respectively. Both are now back on ARV. Researchers expressed disappointment with the result as it shows that HIV still persists even when some of the most sensitive blood tests fail to detect it. It may also show that there may be important long-lived reservoirs of HIV outside the blood compartment. The Boston patients had been compared with Timothy Brown, an American who received a different type of stem-cell transplant to treat leukaemia. Unlike the Boston patients, his donor’s bone marrow also carried a specific mutation known to interfere with HIV’s ability to infect blood cells. Brown continues to remain free of detectable levels of HIV. The other hope of a possible ‘functional cure’ of HIV is a baby in Mississippi who was given antiretroviral drugs within hours of his HIV-positive mother giving birth. The baby appears to have remained free of the virus for the past three years. Despite the HIV virus returning to the Boston patients, the president of the International Aids Society, Nobel Prize-winning virologist Francoise BarreSinoussi, remains optimistic that a functional cure will one day be found. ‘It exists naturally,’ she told The Guardian, ‘so we scientists should be able to induce it.’ like us at facebook.com/ positiveliving mag and receive all the latest HIV news.
This billboard urging people to get tested for HIV was placed in a highly visible roadside location on the NSW Central Coast. It was part of a series of HIV health promotion initiatives run in the lead up to last year’s World AIDS Day by the Positive Services Network, based in Gosford. The campaign was largely funded by MacKillop Projects Fund through ACON Hunter.
Volunteering at AIDS 2014 BY ALEX MINDEL
Help out at the Conference and get free registration! Volunteering has played a vital part in the fight against the Australian HIV epidemic. By helping deliver crucial services and offering indispensable support, volunteers have made an invaluable contribution to Australia’s HIV strategy. Volunteering provides an outlet for exchanging experiences and knowledge about HIV, and to advocate for change at the community level. It also helps tackle the stigma surrounding the disease by displaying the diversity of the lived experience of people living with HIV. This July there is an opportunity to volunteer on a truly global scale. AIDS 2014 will bring delegates from around the world to Melbourne and it will acquire around 1,000 volunteers to help run the event. Volunteering duties will
UPDATE include: assisting with registration; greeting delegates; coordinating program activities; helping in the global village; and acting as conference guides. You’ll also be asked to perform
If you volunteer you get free entrance to the conference and access to all conference sessions when not on volunteer duty. many other important tasks to ensure the conference runs smoothly. All volunteers will gain free entrance to AIDS 2014, saving up to $1,000 registration fee. Volunteers will also gain access to
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conference sessions when not on duty and receive a certificate of appreciation confirming volunteer activity. You’ll even be provided with a free lunch! Volunteering at AIDS 2014 will also provide you with a rare opportunity to acquire behindthe-scenes, hands-on experience of what it’s like to help run one of the world’s largest health conferences. It’s also a chance to unite with like-minded people in the international response to HIV. If this sounds like something you’d like to be a part of, applications open on 1 April. Visit aids2014.org for more information or email volunteer@ aids2014.org. See you there! n Alex Mindel is NAPWHA’s Communications and Membership Services Officer.
A recent article in the Annals of Internal Medicine1 suggest that most people are wasting their money on vitamins and minerals as they do not provide a clear benefit in preventing chronic disease or death, and in some cases, can even be harmful. Recent US scientific studies, involving sizeable patient cohorts taking a multivitamin regimen versus placebo, showed no benefit in the use of the supplements in preventing cardiovascular disease and only limited evidence of benefit in preventing cancer. Supplements did not assist in preventing cognitive decline, either. All of the participants were well nourished with no nutritional deficiencies. The article also suggests that B-carotene increased lung cancer risk for smokers, and that vitamin E and high doses of vitamin A supplements may actually increase mortality. The authors were less sure about vitamin D supplementation, stating that some trials had shown some benefit in reducing the risks of falls in older people with a vitamin D deficiency but more research was needed to prove any benefit. 1 E. Guallar et al, ‘Enough is Enough: Stop Wasting Money on Vitamin and Mineral Supplements’, Editorial, Annals of Internal Medicine, 2013:159; 850-851
iPlan: managing your health NAPWHA has developed a new resource – iPlan – designed to help people living with HIV to become active partners in their healthcare. It also aims to help people understand and monitor some of the more important health concerns they may choose to explore. You can read or download a copy here: napwha.org.au/resource/iplan or email admin@napwha.org.au and ask us to send you a free copy in the mail.
People with HIV are one of the health groups eligible for free influenza vaccines. You just need to ask your local GP to arrange the vaccination and there should be no charge for it. Some people avoid having the injection because they believe, wrongly, that the vaccination can result in them contracting the virus. This is not possible as the vaccination contains dead influenza virus which cannot give you influenza. In rare cases, some people may feel off-colour and get minor symptoms in the 24 hours after the vaccine – but this is not influenza.
New ‘quieter’ female condom The original condom, the FC1 (known to many as the Femidom), was not a great success when it was launched some 20 years ago. Part of the reason was that it was made of polyurethane, which made it a bit noisy during sex. While women in the US and Europe shunned the Femidom, women in African countries, for instance – where difficulties with condom negotiation with men were greater – were more likely to embrace it. Demand from developing countries in particular led to the Chicago-based Female Health Company developing a new version – the FC-2 – made of non-rustling synthetic latex. This has dramatically increased sales, with some women saying the female condom can increase sexual pleasure, and men saying they are less tight than male condoms. Several new types of female condom are also being developed, including the oval-shaped Origami condom, made of silicon, and the Air Condom on sale in Colombia which includes a little pocket of air to aid insertion. It seems the image problem surrounding the female condom may be a thing of the past, at least in some countries. bbc.co.uk
Tackling pain Learn more about how to manage pain, including peripheral neuropathy-related pain, from osteopath Luke Rickards With the advent of antiretroviral drugs HIV became a chronic manageable disease. For many people living with HIV, however, chronic pain remains less manageable. PLHIV can suffer all manner of pain: abdominal pain, chest pain, generalised muscle pain, joint pain, anorectal pain, oral or pharyngeal pain, and peripheral neuropathy (PN) – itself a painful side effect of ART. Alcohol consumption, smoking, injecting drug use, depression and anxiety, and co-illnesses such as diabetes and hepatitis, are also contributors of pain for PLHIV.1 While there is evidence supporting a relationship between increased pain and reduced CD4 counts, people with an undetectable viral load are also prone to pain.1 Early treatment-era studies suggested health providers often underestimated pain in HIV patients. These days, the burden of chronic pain in PLHIV has become increasingly acknowledged within HIV healthcare guidelines. Pain is produced by our brain in response to a perceived threat to the safety of the body as a whole (it is not simply an awful sensation in response to damaged tissues). The complexities that patients and health providers face in getting chronic pain under control are largely a consequence of the complexities of pain itself. Brain-imaging studies have shown diverse areas of the brain are activated in different ways in different people experiencing apparently the same physical stimulus.2 This is because pain is an entirely individual and subjective experience with thoughts, emotions and behaviours – as well as socialenvironmental factors – all coming together to play a part in a person’s experience of pain. Known as the biopsychosocial (or BPS) approach to pain management, health providers recognise that when assessing
If people who are suffering chronic pain are educated and empowered they will experience less pain and psychological distress than those receiving only ‘passive’ treatments. and treating a PLHIV suffering pain they must acknowledge the individual experience whilst carefully addressing each of the relevant dimensions contributing to the pain. Australia was the first country in the world to adopt a National Pain Strategy. This coordinated, multi-pronged approach to pain management ‘often means that more than one category of health professional will be required to make a full assessment . . . to weigh up the relative contributions, enabling selection of the most appropriate treatment or treatments in an interdisciplinary approach’.
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There is convincing evidence that if people who are suffering chronic pain are educated and empowered they will experience less pain and psychological distress than those receiving only ‘passive’ treatments.2,3 Selfmanagement strategies not only encourage PLHIV to take an active role in governing their condition, they’ve also been found to offer important and effective approaches to limiting pain and other negative effects of HIV.4 So what can you do to help placate pain? Well, there are a number of hands-on approaches you could try. Regular aerobic exercise, for instance, has proved
PHOTO PHILHILLPHOTOGRAPHY
Take the shot!
to be beneficial in pain management and can result in significant improvements in cardiopulmonary fitness, body composition, and psychological health and depression (a significant amplifier of painrelated distress).5 Other movement therapies such as tai chi and yoga are also effective pain management techniques for people suffering chronic-pain syndromes.1,6 Practising mindfulness meditation can be immensely helpful for people with persistent pain as well. Then there’s massage therapy – what can be more hands-on than that? In a systematic review of massage therapy for PLHIV conducted in 2010, the reviewers concluded that as well as improving quality of life scores, there was preliminary evidence that massage therapy may have a positive effect on immunological function. Massage therapy also helps relieve HIV-related PN pain. Meanwhile, nerve massage and mobilisation of the peripheral nerve tissue have been shown to help people suffering diabetic neuropathy7 and may also be appropriate in HIV-related sensory neuropathy. (This is best performed by a physiotherapist or osteopath with training in neurodynamic manual treatment.) Controlling pain is challenging, and often it’s a moving target. Because your pain is unique to you, effective selfmanagement will be unique to you, too. Understanding pain, being educated and empowered, and taking an active role in your wellbeing is a good place to start. n Luke Rickards is an osteopath practising in Sydney (lukerickardsosteopath.net). He is currently on the advisory panel for Chronic Pain Australia. n Footnotes are available on our website: napwha.org.au/pl
WINTER ISSUE PART TWO: Practical tips for managing pain
For people who are living with both HIV and hepatitis C virus (HCV) infection, treatment decisions can be especially complex. While HIV treatments have improved dramatically over the last 15 years, HCV treatment remains challenging to take, with a frustratingly low rate of success. The good news is it looks like that’s about to change – and in a big way. HCV treatments are advancing rapidly, with new treatments promising much greater efficacy with fewer side effects.
hepatitis C
THE BASICS An estimated 13% of Australians living with HIV are also living with HCV.1 While most people with HCV in Australia acquired it through injecting drug use, in PLHIV there is clear evidence that sexual transmission is a major issue. People with HIV are less likely to spontaneously clear their HCV infection, and may progress more quickly to HCV-related illness, including liver fibrosis, cirrhosis and liver cancer. Unlike HIV, HCV is curable, but only about 1-2% of the more than 200,000 Australians living with chronic infection receive treatment each year.2 Concern about side effects, the length of treatment (3-12 months) and the relatively low rate of treatment success are believed to be drivers of this low uptake. The objective of HCV treatment is a sustained virological response (SVR), which is considered to be a permanent cure for HCV infection. For over a decade, the standard treatment has been pegylated interferon and ribavirin (PEG-RBV). However, only about 60% of Australians undergoing PEG-RBV treatment achieve SVR.2 Treatment response rates differ according to which of the six HCV genotypes the individual is infected with: most Australians living with hep C have genotype 1 (54%) or genotype 3 (37%). As well as being the most prevalent, genotype 1 has traditionally been more difficult to treat. Among people with HIV+HCV coinfection, response rates are poorer still, with only about 40% achieving SVR in clinical trials.3 Co-infected people with lower CD4 counts and higher HCV viral loads tend to have poorer response rates to HCV treatment,4 as do those with more advanced fibrosis (damage to the liver) or cirrhosis.
Good news for people living with hiv and hepatitis C co-infection. New treatments are on the way, says Paul Kidd.
PositiveLiving l 6 l AUTUMN 2014
PHOTO JANULLA
An improving treatment outlook
CURRENTLY AVAILABLE TREATMENTS Hepatitis C treatment is available on the PBS, and continues to be based on pegylated interferon (which is injected weekly) and ribavirin (RVB), which is taken as tablets twice daily. Last year, two new anti-HCV drugs were listed on the PBS – the first
‘direct-acting antivirals’ (DAAs) for HCV. Unlike PEG-RBV, boceprevir (Victrelis) and telaprevir (Incivo) are protease inhibitors that directly target HCV replication in much the same way that HIV treatments target HIV replication. However, they are used only for people with genotype 1 infection. Used in combination with PEG-RBV, these drugs reduce the length of treatment (typically 24 weeks instead of 48) and increase the chances of success: a study of telaprevir plus PEG-RBV in HIV+HCV co-infected people with genotype 1 produced an SVR rate of 74%, compared with 45% 5 for those only taking PEG-RBV. Similarly, a study of boceprevir plus PEG-RBV in co-infected people with genotype 1 produced an SVR rate of 61% for the triple therapy, compared with 27% for PEG-RBV alone.6 While these drugs represent a significant step forward in HCV treatment, they still fall short of the ideal of an easily taken, highly effective treatment. Both telaprevir and boceprevir cause problematic side effects in a significant number of people – on top of the known side effects of PEG-RBV. The good news is that there are more than a dozen secondgeneration DAAs at various stages of development, including two that have been approved for use overseas, and if current clinical trial results are sustained, these are likely to herald a watershed in the treatment of hepatitis C. TREATMENTS IN THE PIPELINE As with HIV treatments, the new HCV treatments come in a variety of drug classes, based on the different ways they target the virus. The major classes are NS3/4A protease inhibitors; NS5A; and NS5B polymerase inhibitors. As with HIV, it’s likely that drugs from different classes will be combined together for maximum impact against the virus, although we’re only just starting to get a sense of which drugs go with which. SOFOSBUVIR Gilead Sciences’ sofosbuvir (Sovaldi) is an NS5B polymerase inhibitor which has performed well in clinical trials, both in combination with PEG-RBV and in all-oral combinations. It has been approved for use in the US since December. Two interferon-free studies in people with HIV+HCV co-
infection are under way, and results from one of these (PHOTON-1) were presented in November at the Liver Meeting 2013. Participants in this open-label trial took 400mg sofosbuvir once daily, plus 1,000–1,200mg ribavirin in two doses, for 24 weeks. All participants with genotype 1 were treatment-naive, while those with genotype 2 or 3 included treatment-naive and treatment-experienced. Twelve weeks after finishing treatment, response rates were 76%, 88% and 67% for genotypes 1, 2 and 3 respectively. The treatment was very well tolerated, with considerably fewer side effects than PEG-RBV therapy. LEDIPASVIR Ledipasvir is a NS5A polymerase inhibitor, also being developed by Gilead. Results were presented in Boston from a phase-2 study examining a 12-week, all-oral, combination of sofosbuvir, ledipasvir, and either ribavirin or GS-9669, in traditionally very difficult-to-treat patients: treatment-experienced, genotype 1 with advanced fibrosis or cirrhosis. An impressive 100% of participants in this small trial achieved SVR. Importantly, those taking the ribavirin-free combination did not experience the anaemia typically caused by that drug. No information is available yet on the use of this drug in HIV co-infected people.7 SIMEPREVIR Also approved in the US late last year, Janssen’s simeprevir (Olysio) is a NS3/4A protease inhibitor – the same class as telaprevir and boceprevir. Like telaprevir, it is given in combination with PEG-RBV for 12 weeks, followed by between 12 and 36 weeks of standard PEGRBV therapy. Results from a series of trials in HCV mono-infected patients show a response rate of about 80% in previously untreated people.8 A study of simeprevir in HIV+HCV co-infected people was presented at the 14th European AIDS Conference in Brussels last year. That study enrolled 106 HIV positive, HCV co-infected, participants with genotype 1, all of whom were treated with simeprevir plus PEG-RBV for 12 weeks, followed by either 12 or 36 weeks of PEG-RBV alone. Twelve weeks after finishing treatment, 74% of participants had cleared the virus, rising to 79% for those who had previously not been
treated. Most people (89%) in this trial were able to complete treatment after 24 weeks, and among that group of rapid responders, the cure rate was 87%.9 FALDAPREVIR This is an NS3/4A protease inhibitor in development by pharmaceutical company Boehringer Ingelheim. Preliminary results from a study of faldaprevir in people co-infected with HIV were released at the Liver Meeting 2013. The 310 participants in the ongoing StartVERSO4 trial are taking 120 or 240mg faldaprevir plus PEG-RBV for 12 or 24 weeks, followed by PEG-RBV alone for a total 48 weeks treatment. The preliminary analysis looked at the percentage of participants who had undetectable HCV viral load at four weeks post-treatment – a later analysis will identify the percentage who achieved the 12week SVR that is considered a cure. Overall, 74% of participants in this study achieved this early indicator of treatment success.10 DACLATASVIR/ ASUNAPREVIR/BMS-791325 Bristol-Myers Squibb is developing a fixed-dose combination (single pill) regimen containing three HCV treatments from different classes, designed to be used as an interferon- and ribavirin-free treatment, which will be active against all genotypes. Results from a phase-2 study were presented at the Liver Meeting 2013 which showed a 92% SVR rate in previously untreated mono-infected patients after just 12 weeks of treatment.11 A separate study using only daclatasvir (NS5A inhibitor) and asunaprevir (NS3/4a protease inhibitor) had an 85% SVR rate.12 There’s no data yet on the use of this combination in coinfected people. ABT-450, ABT-267, ABT-333 These are a series of drugs being developed by Abbvie – an NS3/4A protease inhibitor and an NS5A inhibitor and NS5B polymerase inhibitor. ABT-450 is boosted with the HIV drug ritonavir (ABT450/r) to improve blood levels. In the AVIATOR phase-2 study, genotype 1 mono-infected participants received an interferon-free regimen on ABT450/r, ABT-267 and/or ABT-333, with or without ribavirin. At 24 weeks post-treatment, 98% of treatment-naive participants, and 93% of those who had taken
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PEG-RBV treatment before but not responded, achieved SVR.13 WHERE TO FROM HERE? As with any report on forthcoming treatments, it’s important to note that not every drug that does well in clinical trials eventually finds its way to pharmacy shelves. But the clear message is that HCV treatment is undergoing a revolution that echoes – and maybe even surpasses – the HIV treatment revolution of the late 1990s. New treatments for HCV are on the way, and they promise much better efficacy, shorter treatment durations and fewer side effects than existing treatments. But there are still plenty of challenges. In the short term, it’s
treatment. Australians who are co-infected will be keen to see these new drugs approved as soon as possible, but at this stage we have no indication of how long that will take. A further challenge will be the cost of new HCV treatments. Simeprevir and sofosbuvir have US price tags of $66,000 and $84,000 respectively for a 12week course, plus the cost of the PEG-RBV or other drugs: that’s $1,000 per tablet (per day of treatment) for sofosbuvir alone. For Australians, that means the drug companies will have to show their drugs represent value for money before they will be listed on the PBS, and that may take some time. For people in poorer countries, drug companies are
whAt you CAN do riGht Now n Everyone should know how to prevent HCV transmission.
Hepatitis C is spread through infected blood but can also be sexually transmitted. Ask your PLHIV organisation or doctor. n Start HIV treatment. Going on HIV treatment has been shown to
significantly reduce the risk of serious liver disease in people coinfected with HIV+HCV.14 n If you get your medical care from a GP, ask for a referral to see a
Hepatitis C specialist. Seek the specialist’s advice about whether you should consider treatment now or wait for newer drugs to become available. n Make healthy lifestyle changes. Cutting back alcohol, getting
exercise and avoiding high-fat foods can help support your liver and reduce HCV disease progression. n Get in touch with your state hepatitis council or PLHIV
organisation for more info and support. Contact details are on the NAPWHA website.
likely the first new drugs to become available will be used in combination with PEG-RBV, particularly for people with genotype 1. Many people are understandably hesitant about taking drugs that can have debilitating side effects, so interferon-free and ribavirin-free regimens are under active development and will hopefully become available in Australia within a few years. With combination therapy likely to become the mainstay of hep-C treatment, we need good evidence of which drugs work best with which. Drug companies are keen to promote their own fixed-drug combinations rather than the mix-and-match approach that’s common in HIV
going to need to be convinced of the need to lower prices and/or allow generic versions of their drugs to be produced. Despite these challenges, the overall picture is a very encouraging one, particularly for HIV+HCV co-infected people, for whom hepatitis C is an unwelcome extra health burden on top of HIV, and who may have failed to respond to HCV treatment in the past or put it off for fear of side effects. The day is coming when practically everyone with hep C can be cured, and it looks like it may not be far off. n Paul Kidd is a Victorian-based writer and activist. n Footnotes are available on our website: napwha.org.au/pl
1
Removing treatment restrictions
The forthcoming change to the PBS ruling on when someone can start HIV treatment is a major achievement for community advocates around the country. The change means that people with HIV can start treatment when they wish, not when their CD4 count drops to 500. Australia follows other countries who made this change when research showed early treatment has significant benefits for an individual’s health. There is growing evidence that untreated HIV has detrimental health effects at all stages of the disease. Treating it earlier can limit the amount of latent HIV held in reservoirs, reduce the inflammation that HIV causes in the body, and may also prevent the development of other complications such as heart disease, cancer and osteopenia down the track. CHALLENGE: SOME ARE YET TO BE CONVINCED Some PLHIV are not ready to commit to a daily pill regimen. Others are doubtful of the merits of early treatment or are overly concerned about drug toxicity – influenced perhaps by the experiences of those who went through the ‘hit hard, hit early’ days when HIV treatment regimens were much harsher. Some doctors do not believe there is enough clinical evidence to start treatment earlier.
2
targets to reduce transmissions
At the 2012 Australasian HIV Conference, the community-led Melbourne Declaration set some bold targets. One of these is to halve new HIV infections by 2015. These targets were finally signed on to by federal and state governments at a Health Ministers’ meeting in 2013. CHALLENGE: MEETING THOSE TARGETS Last year saw a 10% increase in HIV infections in Australia. In order to reduce new transmissions, we all need to embrace a number of tactics. Testing rates within communities at risk need to improve. PLHIV need support to treat earlier. Everyone needs to play safe. With compelling evidence that
treatment reduces transmission, government needs to support better treatment access, including the use of Pre-Exposure Prophylaxis (PrEP) for those at high risk. About one-third of new transmissions occur because one party is unaware that they have HIV. Clearly more people need to test more often, but there are also other issues at play. Assuming someone’s status based on the activity they are prepared to engage in is one of them. We need strong messages about the ongoing importance of
organisations and the tests are administered by trained peers. Evidence of the impact of these clinics is still to be determined but we do know that they are attracting a sizeable percentage of people who have never tested for HIV before. We also know that users like the service. A list of rapid-testing sites is available at endinghiv.org.au/ test-more/a-test/#wheretotest CHALLENGE: PEOPLE TESTING TOO LATE We still have people arriving at hospital emergency departments
Victorians can receive theirs free if they go to the Melbourne Sexual Health Centre. For the rest of Australia, most PLHIV can now pay one co-payment for a two-month supply of each drug in their combination. Some progress has been made but PLHIV groups argue that the system should be fairer for everyone regardless of where they live. A recent study by the Burnet Institute on the cost of ARVs in Victoria concluded that almost a quarter of PLHIV spend more than $800 per year on their HIV
need to come up with solutions to reduce this cost burden. Positive Life NSW recently lobbied the NSW government to provide ARVs for free or as a second option, a requirement for one co-payment regardless of the numbers of ARVs dispensed. They were unsuccessful; the argument being that it would set a precedent for other chronic illnesses. However, there is support from government to revise the system, particularly for those experiencing financial hardship. So negotiations continue.
THE HIV
TOP 10 What are the hot issues in HIV this year? What gains have we made and what challenges are still before us? David Menadue and Adrian Ogier come up with their top 10.
condoms and that treatment as prevention does not remove the risk of transmission during unprotected sex.
3
HIV Rapid testing
In a relatively short space of time, Australia has progressed from having no HIV rapid-testing sites to today when around 40 are operating around the country. Some of these are run out of GP clinics and sexual health services. Others have been set up by community
having developed an AIDSdefining illness without even knowing that they had HIV. Damage to people’s health can be significant if they don’t take action to avoid immune damage early on. Efforts are needed to reach the estimated 15-30% undiagnosed cases of HIV in Australia.
4
reducing the cost of antiretrovirals
WA and NT currently do not charge for antiretrovirals (ARVs).
PositiveLiving l 8 l AUTUMN 2014
drugs alone. This does not include scripts for other common co-conditions such as diabetes, raised lipids or high blood pressure. Some PLHIV are paying too much for their treatments. Those on low incomes who have other co-conditions tend to carry the greatest burden. CHALLENGE: A FAIRER SYSTEM FOR ALL HIV remains a major public health concern and if governments are serious about reducing the barriers to treatment access, they
5
aids 2014
You would have to be living on another planet to not know that the World AIDS Conference is coming to Australia this year. An estimated 15,000 of the finest minds in HIV clinical research, health promotion, care and support will descend on Melbourne for the week of 21-25 July. AIDS 2014 is a great opportunity to share our achievements and learn about different global approaches to HIV and to enlarge our HIV networks and unite in the
response to HIV. (See page 4 for opportunities to volunteer and get free registration.) CHALLENGE: CONFERENCES TAKE UP RESOURCES In a climate of constrained government budgets, HIV agencies around the country have not generally been successful in getting extra funds to help with the demands of this significant international event. Melbourne HIV community organisations are expected to provide cultural, information and visiting programs for delegates.
HIV cure. Professor Sharon Lewin from the Alfred Hospital and Burnet Institute in Melbourne is a world-leading researcher into possible ways to eradicate the virus from the body and develop a ‘functional cure’. We will hope some significant announcements on progress in this area will be made at AIDS 2014. CHALLENGE: CURE STILL YEARS AWAY Even the most optimistic scientists admit an HIV cure is still some time away. The recent news that two Boston patients,
conversation about HIV stigma, particularly among the gay community. The ENUF campaign has enlisted the help of a range of celebrities and community figures to reduce the stigma PLHIV experience when they disclose their status. A number of theatre projects on HIV stigma are planned for AIDS 2014. CHALLENGE: MANY DON’T SEE THE RELEVANCE Many HIV-negative people don’t understand the impact of HIV stigma. They think they don’t
benefits of helping PLHIV ineligible for Medicare.
assistance of all Australian HIV pharmaceutical companies, set up a free access trial for PLHIV deemed by the federal government to be ineligible for Medicare. The AHOD Temporary Residents’ Access Study (ATRAS) currently provides free ARVs to 180 HIV-positive people who are not yet permanent residents – commonly those on student or bridging visas.
9
some progress on hiv criminalisation
Victoria has the highest number of prosecutions in Australia for HIV transmissions and exposure. HIV advocates are hopeful that a Victorian Legal Services Board grant to provide prosecutorial guidelines to prosecutors and lawyers involved in cases of alleged intentional transmission will mark a change in the thinking of the state’s prosecutors.
CHALLENGE: GOVERNMENT NOT YET WILLING TO HELP PLHIV ineligible for Medicare
CHALLENGE: PROSPECTS FOR LEGAL CHANGES ARE UNCERTAIN There has been slow progress for HIV community advocates working with prosecutors to get an education program off the ground. The complexity of the issue and the need to ensure that the information provided to prosecutors is accurate means that reforming the laws will take time. It is also likely that any proposed reforms to the laws would be reviewed by the Law Reform Commission which would likely involve a community enquiry before a Bill to change the existing laws was drafted.
10
PHOTOFRANCKREPORTER
seventh national hiv strategy in development
Most organisations are struggling to meet registration, travel and accommodation costs. Even exhibiting at the conference is an expensive exercise. There is the potential for current priorities to be sidelined as resources are stretched to meet conference obligations. State and federal governments need to contribute more.
6
research into a cure
We get regular media reports on progress towards an
who had been thought to be functionally cured through stem cell transplants, have experienced a relapse where HIV became detectable again, suggests that the progress to a cure may need multiple interventions.
7
people are talking about hiv stigma
A number of recent initiatives – the very successful ENUF campaign from Living Positive Victoria and the Sydney-based TIM website – have started the
know anyone with HIV when most likely they do. It is stigma that prevents friends from disclosing for fear of rejection. Unless this climate of fear and secrecy is changed, it will remain difficult for people with HIV to disclose their status, including to sexual partners.
8
successful program for medicare ineligibles In November 2011, NAPWHA and the Kirby Institute, with the
PositiveLiving l 9 l AUTUMN 2014
often delay starting treatment, are forced to purchase ARVs online and may not access their ideal regimen. The ATRAS program was started out of necessity to help this vulnerable group and while it will last for four years, the program is now fully subscribed. The first year’s evaluation showed significant improvements in the health and wellbeing of those who participated. While it is yet to happen, we hope that the federal government will eventually be convinced of the individual and public health
News that the federal Minister for Health, the Hon. Peter Dutton, has supported the development of a new HIV Strategy was welcomed by HIV advocates. There was hope that the document would build on the agreements signed at the Health Ministers’ Meeting in 2013 that committed to the targets to reduce HIV infections and increase numbers of people with HIV on ARVs. CHALLENGE: CONCERNS ABOUT ADEQUACY Progress on development of the new Strategy has been slow, with concerns that the writing of the document has not included enough community opinion and it will not come with any increased resources. It seems unlikely to be as strongly committed to the movement to end HIV as the NSW Strategy released last year which has seen great commitment and leadership from NSW Health Minister, the Hon. Jillian Skinner.
DOCTOR LOUISE ANSWERS YOUR QUESTIONS
what’syourproblem?
My face is changing Cam from Queensland writes: I’ve been positive for more than 20 years and taking HIV meds for about as long. Recently, I’ve noticed that my cheeks are becoming hollower. I suppose I’ve had this for a while now, but it hasn’t worried me before. Maybe it’s that I’m a bit older (50 last birthday) I’m noticing it more? Can I get this treated? Should I bother? Dr Louise replies: It sounds as if you may be showing signs of lipodystrophy, Cam. Lipodystrophy (or fat distribution syndrome) is a term more associated with the early years of HAART (Highly Active Antiretroviral Therapy). Some people receiving HAART developed changes in fat distribution on the body – most noticeably fat loss from the limbs and buttocks and face (lipoatrophy), and fat accumulation in the abdomen and in the lower neck, or dorsalcervical region, sometimes called ‘the buffalo hump’
(lipohypertrophy). These changes are thought to be linked to protease inhibitor and nucleoside reverse transcriptase inhibitor meds (PLHIV who have started treatments in recent years will be much less likely to develop lipodystrophy than those who have taken earlier types of antiretrovirals). Understandably, noticeable bodily changes can affect a person’s mood, self-esteem and general quality of life. Management options are varied. Depending on a person’s treatment history and viral resistance profile, sometimes the ARV regimen can be altered to try and reduce unpleasant side effects. This is not always possible, though, and alternative treatments for facial lipoatrophy are available. For a number of years, dermal ‘fillers’ have been used to restore facial symmetry and provide some relief from symptoms. Sculptra (a poly L-lactic acid) is listed on the PBS and has a Medicare item for treatment initiation and subsequent
cases, the treatment is tolerated well and has beneficial physical effects. But the benefits aren’t only physical; patients commonly experience psychological benefits also. So ask your s100 prescriber, treating GP or HIV physician about qualified Sculptra practitioners and, if you are eligible, you may be referred. There may be out-of-pocket costs associated with this treatment, so be sure to enquire about this when making an appointment. References available on request Thanks to staff at Laserway on Davey for their contributions. treatments for patients with HIVrelated lipoatrophy. Initial treatment is limited to a maximum quantity of two vials and four repeats. Maintenance treatment is limited to one retreatment (maximum quantity of two vials) every two years. The dermal filler is injected into the subcutaneous tissue of the face, with ongoing physical changes usually observable within a few months (usually a number of treatments are required to get
the desired improvements and then subsequent maintenance treatments can be administered in the second year). It is important that this procedure is only performed by clinicians specifically trained in its administration. Common side effects might include discomfort at the injection site, redness, swelling and occasionally bruising around the area. Any injection has a small risk of infection. In most
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 the HIV sector since 1993. Previously a Director of VAC’s Centre Clinic in Melbourne, she is currently the Director of the state-wide 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 Healthy smoothies Brenda De Le Piedra is a nurse with a passion for making healthy food that is fast, clean and plant-based. She strongly believes that what you put inside, you will eventually wear on the outside. Therefore, she says, you should always aim to make every meal an opportunity to nourish, and not punish, your body. Here are her recipes for a couple of smoothies that target specific issues that may help people with HIV by increasing immunity, assisting with gaining weight, and improving general health.
Antioxidant smoothie
Chocolate thickshake
This is great as an immunity booster, full of fibre and lots of vitamin C.
This is a sweet treat that is rich in antioxidants from the cacao, has a healthy dose of good fats from the avocado, and is naturally sweetened by the dates and banana. Great for those wanting to put on weight without compromising their arteries!
l 4 frozen bananas l 1/4 small
beetroot l 1 small carrot l 1 orange, seeds removed l 1 cup of frozen blueberries l 1 cup of strawberries l juice of half a lime l 1 cup of water (adjust to your preferred consistency) Blend and serve.
l 200ml unsweetened almond milk l 2 medjool dates, pitted l 1/2 avocado l 2 tbs raw cacao powder l 1 large frozen banana
Blend until smooth and creamy and dust with some grated raw chocolate (optional) All recipes can also be found on Brenda’s blog: onehungrymami.blogspot.com
PositiveLiving l 10 l AUTUMN 2014
STATEOFMIND
WHERE THERAPISTS RECOMMEND TECHNIQUES WE CAN EMPLOY TO DEAL WITH THE SYMPTOMS OF ANXIETY OR DEPRESSION
Many people experience depression at some time. Chantelle Fernando gives us some useful tips on how to live a balanced life, hopefully avoiding the need for antidepressants.
Achieving a balanced life Time with self and time with others When you’re feeling depressed one of the last things you want is company, yet at the same time you can feel isolated which can exacerbate your low mood. There is nothing wrong with spending time alone, but if you are finding that this is making you feel worse then it may be time to consider looking for ways to engage with others. If you don’t know where to start, maybe you can find an interest group which appeals to you: maybe a book club, a bushwalking group or an archery class – whatever takes your fancy! Another way to meet likeminded people is to volunteer some time to something you are passionate about. Of course you don’t have to limit social time to people; animals provide just as much value to our health and wellbeing as humans. Perhaps you could volunteer at your local animal shelter or walk an elderly neighbour’s dog.
Eating It’s super-important to have a varied and healthy diet. Research tells us that a diet of natural, lowprocessed foods not only affect our physical health but also our mental health too, providing us
with greater clarity, uplifting our moods and improving our ability to make decisions. Sometimes food can be used as an emotional regulator, which usually leads to poor food choices. If this sounds like you, you may want to start a diary in which you list what you eat and how you were feeling at the time before eating. If you keep a track of this, you should be able to identify patterns of the sorts of food you are tempted to eat when you feel a certain way.
Exercise Exercise is difficult because you may already feel as though you have no energy to expend. The strange thing about exercise, though, is that it makes you feel more energetic due to the influx of feel-good hormones that flood your body. The released hormones make us feel more alert, happier and less stressed. (Always consult with a medical practitioner before commencing any sort of exercise regime.) Ensuring you choose something that you enjoy will make the task much easier. If you can make your exercise an outdoor activity you’ll get the added bonus of receiving a healthy shot of vitamin D – known as the sunshine drug – and heaps of fresh air.
Sleeping (This refers to sleeping without the aid of illicit or prescribed medications.) For a good night’s rest, ensure the environment you sleep in is as peaceful as possible. Also, try limiting consumption of caffeinated or alcoholic beverages, watching tense action films, listening to highpaced bass music, or doing a strenuous physical workout just before you head to bed. It’s important to remember that sleeping well is not about having eight hours sleep, but
Slowing down
instead having a period of undisturbed sleep from which you wake feeling rested and refreshed. The number of hours will vary
person to person, but generally, the recommendation is somewhere between six to ten hours per night.
n Chantelle Fernando is a psychologist who offers counselling at the Victorian AIDS Council/Gay Men’s Health Centre. n For further information about Counselling Services at the VAC/ GMHC, please go to vicaids.asn.au/counselling-services.
PositiveLiving l 11 l AUTUMN 2014
Slowing down is just as important as exercise. It could be meditation, yoga practice, or breathing exercises. We know that the power of mindful breathing is helpful for creating more balance in one’s life. With practice, it can help alleviate symptoms of anxiety and feelings of being overwhelmed. A simple way of doing this is to just focus on your current breathing for a minute or two each morning when you wake. This list is a starting point to creating more balance in your life. It will take some time to achieve and there will be some days when you will feel out of whack, but hopefully, this information will put you on the road to establishing control of your life.
PHOTO APOMARE
When you’re feeling depressed or anxious it can seem as if your whole world is in chaos. It can be hard work just getting up in the morning or dropping off to sleep. Creating balance in your life can act as an anchor in stormy times. The following are just a few areas to consider when in pursuit of a balanced life.
NEWS PositiveLifeNSW
With three stalls, more than twenty volunteers plus a number of staff and Board members, we had a very busy presence at Fair Day on February 9. We launched our latest campaign, ‘Choose’, which encourages people with HIV to get treated as early as possible and in doing so, take advantage of the impressive developments in current treatments. Apart from the posters, fridge magnets and the very attractive and popular campaign t-shirt — On the first of July 1984, I sat in the waiting room of the Taylor Square Private Clinic, wondering when my name would be called. This day could change my life, I thought, as I knew I was being tested for what was subsequently called the Human Immunodeficiency Virus. Eventually my name was called. Three vials of blood and an extensive questionnaire — diet, sexual practices, family medical history, exercise and recreational drug use — later, I was sent home. Three weeks of moth-tread-on-ice passed until the second test. At that time, the science to determine the presence of antibodies in one’s blood had not been developed. The results came in: two negative, one positive. Great betting odds, I thought as the doctor told me I was probably okay. Twelve months later, I concluded that the virus was coursing through my body. The middle 1980s also marked another significant life change. In 1986, I was accepted into the Bachelor of Arts (Communication) at the then
We go to the Fair Hédimo Santana reports on how Positive Life NSW stood out at Mardi Gras Fair Day 2014 worn by everyone on our stall — we included a number of other resources in our showbags. More than 500 showbags were distributed within the first two hours of the Fair! The stall was well visited, with
people from all walks of life stopping by to pick up resources and enquire about what we offer. Some asked for referral to HIV services and organisations, while others stopped by to have a chat, socialise and spend quality time
with other members of Positive Life. The ‘traditional’ end-of-day downpour that has us running for cover never eventuated; the beautiful blue sky prevailed all day. And the warm weather kept
Writing the ‘lurghi’ PETER MITCHELL
NSW of Institute of Technology, which, in 1988, became the University of Technology, Sydney. After three years of part-time work and full-time study, I completed the degree, which led to many adventures writing across genres. From the late 1980s to the early 1990s, I worked constantly at my writing practice. As writing is more re-writing than so-called originality, the three Ps — persistence, practice and progress — were my work mantra. Through these years, I worked mostly on short stories and freelance journalism, especially after late 1992 when I was diagnosed with my first serious opportunistic infection: a non-Hodgkins Lymphoma. I wrote primarily for the community press, becoming a regular contributor to Campaign as well as writing book reviews, most
notably for the Australian Book Review. In March 1994, I moved to the Rainbow Region and have lived mostly in Lismore, the home of Tropical Fruits. The subsequent twenty years has been (and is) a mostly enriching time doing volunteer work — ACON Northern Rivers, Nimbin Headers Sports Club, Northern Rivers Writers' Centre, Dangerously Poetic — working part-time and/or seasonly and living the business of day-to-day life (washing up, paying the rent, shopping at Woollies). Of course, there are beige moments inbetween times to add contrast and build resilience. In all this time, I've still worked and work consistently at my writing. The freelance journalism receded while poetry was a late-starter in my writing career, emerging from a life-
PositiveLiving l 12 l AUTUMN 2014
writing workshop in the late 1990s. I continued and continue writing poetry, short stories, memoir and literary criticism (book reviews and academic papers in refereed journals). Reading widely is an essential working tool for any serious writer. I read voraciously, devouring anything and everything that catches my fancy: poetry, short story collections, essays, literary criticism, blogs, novels, newspapers and journals. I jot down the names of authors I come across on the internet or that friends recommend. I check out bookshops as well as the municipal libraries across the region. Sometimes, I read for pleasure; sometimes for pleasure and as a writer; sometimes for pleasure and as a writer and as a critic. I always have three or four different books on the go at the same time as this is the only way
fairgoers happy and constantly moving. By 4pm, most of our resources were gone, making packup a breeze. Left behind were fond memories of a day that kept Positive Life in the community spotlight, providing us with the chance to relate to our members and the broader community in a way we could not otherwise do. We’d like to thank the many volunteers who came to help out and we’re certainly looking forward to next year’s Fair Day. to keep my interest. In May 2009, The Scarlet Moment (Picaro Press) was published. This chapbook contains some of the poems evoking life with HIV. Some time after its publication, I realised these few poems barely represented living thirty years with 'the lurghi'. This started my subsequent adventure with Fragments of the Lurghi, which is the proposed project for the 2014 Dorothy Hewitt Flagship Fellowship at Varuna Writers' Centre (Katoomba, NSW) later this year.
414 Elizabeth Street Surry Hills 2010 ) (02) 9206 2177 or 1800 245 677 ø positivelife.org.au
PLHIVDIRECTORY The 2014 edition is available in the flipbook at napwha.org.au/pl
Women’s Networking Zone at AIDS 2014 The Women’s Networking Zone (WNZ) is a community-led forum that runs in parallel to AIDS 2014. WNZ is a vibrant, inclusive, and exciting space where community members, advocates, policy analysts, decisionmakers, service providers and researchers share and learn. The forum promotes dialogue, forges new networks, raises the visibility of HIV, champions the leadership of women living with HIV — in particular young women and women from the local community — and promotes the global exchange of experiences, abilities and knowledge. MORE INFO
womensnetworkingzone.org
news LIVING POSITIVE VICTORIA livingpositivevictoria.org.au
AlfredHealth’s responsefailsthetest Living Positive Victoria has formally written to Alfred Health, criticising its community consultation paper Responding to the future needs of the HIV community, which outlines changes to the delivery of HIV services. Living Positive Victoria also argues that the information presented at community forums and meetings with Alfred Health staff fails to provide a sufficient case that any of the proposed options will better meet the needs of PLHIV. ‘What we have heard very clearly from these constituencies is that fear, mistrust, doubt and hostility have permeated the consultation process,’ says Living Positive Victoria President, Ian Muchamore. ‘Many people directly affected by the proposed changes to
service structures are understandably frustrated and the tone and tenor of the formal consultation meetings has often not been sufficiently respectful. As we make clear, trust and reengagement with PLHIV needs to be rebuilt.’ Fairfield House has traditionally been the centre of HIV service delivery, as well as a safe place for respite and palliative care. Past specialist HIV health services delivered by Alfred Health have been highly regarded by many of those living with HIV who have used these services. As a community-based organisation, Living Positive Victoria is very keen to offer input into the redesign of a coherent, integrated and modern model of HIV care at Alfred Health where Fairfield House is better utilised
and world-class health care is delivered to all patients with HIV at The Alfred. Living Positive Victoria holds firmly to its pledge that 'no one is left behind'. ‘We will strive to ensure the issues and concerns raised by our members and other PLHIV are at the forefront of discussions. We are keen to be aware of their concerns and also to advocate for acceptable and pragmatic solutions,’ says Ian. ‘That much-needed community engagement to build better HIV services at Alfred Health is far from over – in fact it has only just begun.’ The options presented lack the detail as to how services will respond to the needs of the community; how they will deliver a better user-experience; how they focus on consumer-directed
care; or how they increase the skills of the clinical workforce. We believe these elements must be dealt with if improvements are to be made in service efficiencies and real health care benefits delivered to PLHIV. The community consultation period has ended and Alfred Health is preparing a report that will be made publicly available at a later date. To read the full letter and submission to Alfred Health, go to: livingpositivevictoria.org.au/ announcements/living-positivevictoria-responds-to-alfredhealth-community-consultations For details about the consultation process, go to: www.alfred.org.au > Community Consultation, Future needs of the HIV community
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
Volunteering at AIDS 2014 AIDS 2014 is expected to attract more than 14,000 delegates from nearly 200 countries. The conference relies on volunteers, who will support the running of the conference, greet delegates, help in the Global Village and perform many other crucial tasks. If you want to volunteer, please apply online from 1 April.
PLHIVDIRECTORY The 2014 edition is available in the flipbook at napwha.org.au/pl
MORE INFO
AIDS 2014 Volunteer Department volunteers@AIDS2014.org
PositiveLiving l 13 l AUTUMN 2014
NATIONAL l ¢ Australian Federation of AIDS Organisations (AFAO) ) 02 9557 9399 ø afao.org.au ¢ Hepatitis Australia) 02 6232 4257 Hep Infoline 1800 487 222 ø hepatitisaustralia.com ¢ National Association of People With HIV Australia (NAPWHA) ) 02 8568 0300 or 1800 259 666 ø napwha.org.au
ACT Area code (02)l ¢ ACT Hepatitis Resource Centre ) 6230 6344 or HepLine 1300 301 383 ø hepatitisresourcecentre.com.au ¢ AIDS Action Council of the ACT (M) (V) Information, referral, support, counselling, advocacy, positive speakers’ bureau, women’s group, financial help, dieticians clinic + workshops, social drop-in centre, free internet. Westlund House, 16 Gordon St, Acton ) 6257 2855 2 support@aidsaction.org.au ø aidsaction.org.au ¢ Positive Support Network Monthly social + educational night for PLHIV. Free dinner. 1st Wed, 6-9pm ) 6257 2855
NEW SOUTH WALES Area code (02) l ¢ ACON (M) (V) HIV prevention, health promotion, advocacy, care + support for PLHIV, glbti, ATSI, IDU, sex workers. Sydney (head office) 414 Elizabeth St Surry Hills ) 9206 2000 /1800 063 060 Hearing impaired 9283 2053 ø acon.org.au ¢ Hunter 4962 7700 ¢ Northern Rivers 6622 1555 or 1800 633 637 ¢ Mid-North Coast 6584 0943 ¢ Ankali (V) Volunteer support for PLHIV, partners, family, friends. Referrals, counselling. ) 9332 9742 ¢ Blue Mountains PLWHA Drop-in centre. Peer support, advocacy, health promotion. 10 Station St Katoomba ) 4782 2119 2 ¢ Bobby Goldsmith Foundation (BGF) (V) Financial help with HIV medications, nointerest loans, financial counselling, accom. support for people returning to work or study. 111-117 Devonshire St Surry Hills ) 9283 8666 or 1800 651 011 ø bgf.org.au ¢ Community Support Network (CSN) (V) Practical home help + transport for PLHIV ¢ Sydney ) 9206 2031 or 1800 063 060 ¢ Hunter ) 4962 7700 ¢ Mid-North Coast ) 9294 4546 (message service) ¢ CSN volunteers (training provided) ) 9206 2038 ¢ Hepatitis NSW (M) (V) ) 9332 1853 Helpline 9332 1599 2 hnsw@hep.org.au ø hep.org.au ¢ NSW country 1800 803 990 ¢ HIV/AIDS Legal Centre (V) Free HIVrelated legal services. Wills, super, immigration, discrimination 414 Elizabeth St Surry Hills ) 9206 2060 or 1800 063 060 2 halc@halc.org.au ø halc.org.au
PLHIVDIRECTORY KEY TO SYMBOLS ) Phone ø Internet 2 Email 2 Limited hours (M) Membership organisation (V) Volunteer opportunities
¢ Karumah (Newcastle) (M)(V) Case management outreach program based on chronic care self-management. Lunch Tue, Thurs, bi-monthly BBQ ) 02 4940 8393 2 admin@karumah.com.au ø karumah.com.au 2 ¢ Multicultural HIV + Hepatitis Service Bilingual/bicultural support, advocacy for people from CALD backgrounds. ) 9515 1234 or 1800 108 098 ø mhahs.org.au ¢ Positive Central Counselling, dietetics, occupational therapy, physio. Individual + group sessions, home visits. 103-105 Redfern St Redfern ) 9395 0444 ¢ Positive Life (NSW) (M) (V) Advocacy, publications, speakers’ bureau, events. 414 Elizabeth St Surry Hills ) 9206 2117 or 1800 245 677 ø positivelife.org.au ¢ Positive Support Network (Central Coast) Care + support, referral, counselling, education+advocacy Tu-Thu 8am-4.30pm ) 4323 2905 2 posnet@tpg.com.au ø positivesupportnetwork.com ¢ PozHet (HIV Positive Heterosexuals) (M) Freecall support for positive straight people and partners. Women’s groups. Annual calendar of events. ) 1800 812 404 2 pozhet@pozhet.org.au ø pozhet.org.au ¢ The Western Suburbs Haven (V) Social support, convalescent + respite care, meals, massage, classes, pantry program, workshops, internet access. ) 9672 3600 ø thewesternsuburbshaven.com ¢ Tree of Hope Pastoral + practical support services for PLHIV and for their primary carers. 2c West St Lewisham ) 9509 1240
NORTHERN TERRITORY Area code (08)l ¢ NT AIDS and Hepatitis Council (NTAHC) 46 Woods St Darwin ) 8944 7777 2 info@ntahc.org.au ø ntahc.org.au ¢ Alice Springs ) 8953 3172 ¢ PLWHA/NT (M) PO Box 2826 Darwin 0801 ) Bill Patterson or Daniel Alderman 8944 7777
QUEENSLAND Area code (07) l ¢ Hepatitis Queensland (M) Education, support, info, advocacy, counselling. ) 3846 0020 or 1800 648 491 (country) 2 info@hepqld.asn.au ø hepqld.asn.au ¢ Positive Directions Community based, client centred care coordination with experienced HIV community nurses and client liaison officers. Services incl mental health, diet, support to diverse social groups. ¢ Brisbane ) 3028 4730 ¢ Cairns ) 4051 1028 ¢ Townsville ) 4721 1384 ¢ Sunshine Coast ) 5441 1222 ¢ Gold Coast ) 5576 8366 2 pdinfo@positivedirections.org.au ø positivedirections.org.au
¢ Queensland AIDS Council (QuAC) (M)(V) Promotes health of lesbian, gay, bisexual, transgender and intersex people as well as sexual health and indigenous health. 30 Helen St Teneriffe 4005 2 info@quac.org.au ø quac.org.au ¢ Brisbane + SE Qld ) 3017 1777 ¢ Cairns ) 4041 5451 Area 1800 884 401 2 cns@quac.org.au ¢ Statewide 1800 177 434 ¢ Queensland Positive People Inc (QPP) (M) (V) Peer support, advocacy, info. 21 Manilla St East Brisbane ) 3013 5555 or 1800 636 241 2 info@qpp.org.au ø qpp.net.au
SOUTH AUSTRALIA Area code (08) l ¢ Cheltenham Place (Centacare HIV Services) Respite care for PLHIV and their carers based on assessed needs. ) 8272 8799 ¢ Hepatitis SA ) 8362 8443 or 1300 437 222 (regional) ø hepatitissa.asn.au ¢ Hepatitis SA Library Free online catalogue of resources covering treatment, tests + procedures, lifestyle (nutrition, mental health), risk factors, discrimination, information for different cultures + interest groups, educational, policy and statistical documents. ø hepsa.asn.au/library. ¢ HIV Women’ n’s Project (Women’ n’s Health Statewide) Peer support group, info, advocacy. 64 Pennington Tce North Adelaide ) 8239 9600 or 1800 182 098 2 cywhsa@health.sa.gov.au ø whs.sa.gov.au ¢ Mosaic HIV and Hepatitis Services (Relationships Australia) Confidential free service for those affected by HIV or Hep C. 49a Orsmond St Hindmarsh ) 8245 8100 8 Butler St Port Adelaide ) 8340 2022 ¢ Positive Life (SA) (M) (V) Provides various health promotion activities for PLHIV and those closely affected. Runs Positive Living Centre, offering referrals, treatments info + other services. 16 Malwa St Glandore ) 8293 3700 ø hivsa.org.au
TASMANIA Area code (03) l ¢ Sexual Health Service 60 Collins St Hobart ) 6233 3557 or 1800 675 859 (Hobart, Launceston, Devonport, Burnie) ¢ Tasmanian Council on AIDS, Hepatitis and Related Diseases (TasCAHRD) (V) 319 Liverpool St Hobart ) 6234 1242 or 1800 005 900 ø tascahrd.org.au
VICTORIA Area code (03) l ¢ The Centre Clinic Community health service for PLHIV + GLBT community but open to all. Rear 77 Fitzroy St St Kilda ) 9525 5866 ¢ Country Awareness Network (M)(V) Support, education, resources, advocacy 34 Myers St Bendigo ) 5443 8355 ø can.org.au ¢ Education and Resource Centre (HIV, Hepatitis and STI) at the Alfred Community resources on HIV, hepatitis, STDs, health research. ) 9076 6993 ø hivhepsti.info ¢ Hepatitis Victoria (M) Information, support, referrals. Hep positive volunteers welcome, training given. ) 9380 4644 or 1800 703 003 2 info@hepcvic.org.au ø hepcvic.org.au ¢ HIV and Sexual Health Connect Line (V) Info, support and referral regarding HIV and sexual health. ) 1800 038 125 ø connectline.com.au ¢ Housing Plus (Inner South Community Health Service) Housing support services for PLHIV throughout Victoria. 240 Malvern Rd Prahran ) 9066 1401 2 ahag@ischs.org.au ¢ Living Positive Victoria (M) (V) Support, advocacy, representation. Speakers’ Bureau, treatments officer, newsletter, events. 111 Coventry St Southbank ) 9863 8733 2 info@livingpositivevictoria.org.au ø livingpositivevictoria.org.au ¢ Positive Living Centre Free tea/ coffee/brunch, complementary therapies, massage, naturopathy, yoga, low-cost meals, food pantry, emergency financial relief, peer support, legal centre, social/educational/ self-development courses + activities, community support, outreach, computer/ internet training, fitness classes. (Tues-Fri) 51 Commercial Rd South Yarra ) 9863 0444 or 1800 622 795 ¢ Positive Women Victoria (M) Statewide peer support + advocacy for positive women. Confidential support, info, advice, publications. 111 Coventry St Southbank ) 9863 8747 2 info@positivewomen.org.au ø positivewomen.org.au ¢ Straight Arrows (M) Support, services for HIV+ heterosexuals + families. Suite 1, 111 Coventry St Southbank ) 9863 9414 2 information@straightarrows.org.au ø straightarrows.org.au ¢ Victorian AIDS Council/Gay Men’ n’s Health Centre (VAC/GMHC) (M) (V) 6 Claremont St South Yarra ) 9865 6700 or 1800 134 840 ø vicaids.asn.au
WESTERN AUSTRALIA Area code (08) l ¢ Hepatitis WA ) 9227 9800 (enquiries) 9328 8538 (support, info) 1800 800 070 (WA country) ø hepatitiswa.com.au ¢ WA AIDS Council (WAAC) (M) (V) Support, events, courses, wellbeing programs, life coaching. 664 Murray St West Perth. ) 9482 0000 ø waaids.com
ARE YOUR DETAILS CORRECT? The PLHIV Directory lists services, programs and events of interest to HIV-positive people. It appears once a year in the Autumn edition. To enquire about a free listing or to update your details, email: pl@napwha.org.au
PositiveLiving l 14 l AUTUMN 2014