PositiveLiving A mAgAzine for people living with hiv l spring 2012
The power of resilience PLUS Why treatment is good for you
ISSN 1033-1788
EDITOR Adrian Ogier (adrian@napwa.org.au) ASSOCIATE EDITOR David Menadue CONTRIBUTORS Ruth Hennessy, Phillip Keen, Matthew King, James May, Neil McKellar-Stewart, Robert Mitchell, Dr Louise Owen, Peter Watts DESIGN Stevie Bee Design
Positive Living is a publication of the National Association of People Living with HIV/AIDS.
napwa Positive Living is published four times a year. Next edition: December 2012 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 2042 TEL: (02) 8568 0300 FREECALL: 1800 259 666 FAX: (02) 9565 4860 EMAIL: pl@napwa.org.au WEB: napwa.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 NAPWA except where specifically indicated. Any reference in this publication 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 PHOTO ENTER89
America leads in more ways than one After a 25-year absence, the world AiDs Conference returned to the United states this year. taking advantage of the lifted travel ban on plhiv, nApwA’s president, robert mitchell was there. As expected, AIDS2012 was a very American conference. Our hosts made no bones about taking this opportunity to showcase some of the advancements they’ve made in recent years; notably legislative and policy reforms that led to their lifting of the travel ban, their first comprehensive affordable healthcare legislation and their first national strategy for HIV. The USA has also led many of the global aid initiatives resulting in eight million positive people now currently receiving treatment. There were contradictory notes, however, to this championing of US leadership. The USA has the worst HIV epidemic of any developed nation — as bad as many parts of Africa. And this is most notable in its capital and the venue for the conference: Washington DC. Many of the standards of universal care which are taken for granted in most other developed countries are not available to Americans. As an example, only about 30% of PLHIV receive treatment in the USA compared to 52% here in Australia. The USA is also the global centre of the HIV pharmaceutical industry and the source of significant HIV research; and this conference provides an opportunity for new science, research and programs to be presented. Even just trying to comprehend how to absorb the
PHOTO: IAS
PositiveLiving
At the closing ceremony in washington DC, the globe gets passed to Australia who will host AiDs2014 in melbourne. FROM LEFT: minister for health tanya plibersek, nobel laureate françoise Barré-sinoussi, prof. sharon lewin and victorian minister for health David Davies
volume of material available is a daunting task. People with HIV from across the globe come to discuss their responses to the epidemic and how new science will impact their lives. There is always a tension between the scientific, political, civil and community sectors, with the community sector often feeling like the junior member in the partnership. While much was made of the fact that removing the ban on PLHIV travel enabled us to meet in Washington, there still remained significant restrictions for anyone with a criminal record or history of drug-taking. Consequently, there was very little representation of, and participation by sex workers and people who inject. In fact, a separate satellite conference was organised and held in India for
and by these excluded groups. A common refrain within presentations from those communities most affected was ‘nothing about us without us’. Clearly, community and particularly HIV positive people must be central to the response to the epidemic. Irrespective of the advances in HIV science, the epidemic will not be stopped without new knowledge being appropriately implemented at a delivery level. There was a mood of optimism throughout the conference driven mainly by presentations on work towards a cure, vaccine research and data on a range of new HIV treatments. Popular also were presentations on the effectiveness of programs to prevent motherto-child transmission and the use of HIV drugs for pre-exposure prophylaxis.
A lot of attention was paid to the fact that eight million people are now on treatment — triple the number just seven years ago. It brings closer the real possibility of an AIDS-free generation and the three zeros: zero deaths, zero new infections and zero AIDS. But to achieve these goals we must be cleverer with the resources we have and quicker to implement programs that we know to be effective. We must scale up testing, treatment and care. With enough commitment now, the targets agreed to last year at the United Nations can be reached. But we must plan beyond these targets. Our goal must be to provide treatment to every person living with HIV in the world. If we invest now, we’ll reap the benefits later. This is a significant time in the epidemic as we look forward to 2014 when Australia will host the World AIDS Conference in Melbourne. In two years’ time much of the current research will have advanced and our way forward will be a bit clearer. Progress towards achieving the current global targets will begin to be measured and a new set of targets discussed. When Tony Fauci, Director of the US National Institute of Allergy and Infectious Diseases, was asked if the glass was half empty or half full, he replied simply: ‘We have a glass.’ While he was referring specifically to the current known science around finding a cure, I believe his words resonate further. We can end the HIV epidemic. All we need to do is to fill that glass with commitment.
ContriBUtors (FROM LEFT) ruth hennessy explains how cognitive behaviour techniques can transform our lives l matthew King pleads the case for those of us who are happy not to be sexual athletes l James may tells us why he didn’t take treatment and what changed his mind l David menadue looks at ways we can build resilience l neil mcKellar-stewart presents compelling data on why treatment is good for us l robert mitchell returns from Washington with a mixed review on America’s progress l Adrian ogier reviews the latest cure research l Dr louise owen answers questions on gonorrhoea and genital herpes l peter watts looks for ways to tackle fatigue. PositiveLiving l 2 l SPRING 2012
THENEWS
96% — effectively eliminating transmission,’ Professor Grulich says. ‘The problem is there are simply no data anywhere in world on this question that apply to gay men.‘ Treatment as prevention has the potential to have a huge impact on the epidemic. Used along with other forms of HIV prevention — both new and
it will provide important information about how much HIV treatment and viral load affect the possibility of HIV transmission within gay couples. ‘In the last year, research findings in heterosexuals have shown that when the HIV positive partner is on treatment, the risk of HIV transmission to their HIV negative partner is reduced by
HPV vaccine extended to boys
up program for the next two years. Minister for Health Tanya Plibersek has said that providing the HPV vaccine to boys will protect them and also increase the effectiveness of the vaccination program for girls.
not on treatment?
Do you have hiv but are currently not on treatment? researchers from the national Centre in hiv social research and nApwA are interested in your story and hearing your views on hiv treatment. Interviews can be done over the phone or in person in urban Sydney and should take between one and two hours. With your consent, the interview will be audio-recorded; however, all
information obtained in connection with this study will remain confidential. You must be over 18, proficient in English and currently not taking antiretroviral therapy. If you’d like to participate in the research project, please contact Dr Sean Slavin on Freecall 1800 259 666 or email sean@napwa.org.au. All participants will receive a Coles gift voucher valued at $30.
serodiscordant sexual relationships to enrol into the study, and they can do so at the positive partner’s regular HIV clinic. Both partners will be followed two to four times per year for blood tests and STI screening and to complete short questionnaires. HIV positive men in Sydney also have the opportunity to participate in a sub-study looking at viral load in semen.
Where are we with rapid HIV testing? PHOTO: LOVLEAH
in a world first, Australian schoolboys will soon be able to get the gardasil vaccine, which will protect them from contracting the human papillomavirus (hpv) types 6, 11, 16 and 18 — the types most responsible for causing genital warts, precancerous anal lesions and anal cancer. Starting next school year, the Gillard Government will fund the vaccine for 12- and 13-year-old boys through school-based programs under the National Immunisation Program. Year 9 boys will also be able to get the vaccine at school under a catch-
traditional — this may be able to dramatically reduce the rate of new HIV transmissions. The study is being coordinated by the Kirby Institute at the University of NSW, and will be conducted at clinics in Sydney, Melbourne, Brisbane and Adelaide. Further sites may also open in Cairns and Canberra. Opposites Attract needs men in
Australia has yet to approve rapid hiv testing. Currently, the only way to access the technology is through clinical trials. Two of these are in the final stages of data collection and analysis, with results due to be presented at the Australasian HIV/AIDS Conference in October. One trial, at the Melbourne Sexual Health Centre, has been running since September 2010. It was established to test whether gay and other men who have sex with men would test more often at a clinic if they could get results on the spot. 400 men were randomised into two groups of 200 each; one group had access to rapid testing at the initial visit and return visits, while the other group only had access to conventional testing. The research team, led by Dr Tim Read, will present the final trial outcomes in relation to repeat testing rates in October. However, preliminary data shows that over 90% of the men who rapid tested prefer it to the conventional variety. Since late 2011, four sites in Sydney have been comparing the performance of rapid tests with conventional laboratory tests,
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plus seeing which are preferred by participants and clinic staff. This trial has recruited over 1100 gay and other MSM and feedback has been positive, with the great majority reporting satisfaction with, and a preference for, rapid testing. The Sydney trial has reached the planned sample size. However, the investigators, led by Dr Damian Conway, have extended the trial. The trial's procedures have also changed so that men can now return for multiple tests
and no longer need to complete study surveys. The participating clinics are Sydney Sexual Health Centre, Parramatta Sexual Health Clinic, Clinic 16 at Royal North Shore Hospital and the Albion Centre. Additional clinics may soon join the trial. A third rapid HIV testing trial at the Brisbane Sexual Health Clinic will run until December 2012. This trial is assessing the accuracy of a rapid test in both HIV negative and HIV positive men. PHOTO: ANTONPRADO
we currently don’t know how much being on treatment reduces the risk of hiv transmission within serodiscordant gay relationships. The Opposites Attract study is a globally unique research project being launched in Australia to find out just that. Professor Andrew Grulich, who is heading the study, believes
PHOTO: DONSKARPO
serodiscordant couples needed for important study
Checklist guide now available Hard copies of the latest Checklist guide for people with HIV are now available from the NAPWA office in Sydney. This handy booklet will help you make the best decisions about your health, care and treatment whether you’ve just found out you’re positive or you’re a long-termer. If you’d like a copy (or copies for your service) contact us at admin@napwa.org.au or Freecall 1800 259 666.
THENEWS
women comprise nearly half of the hiv positive population worldwide, but these 15.5 million women tend to be underrepresented in clinical trials of hiv drug therapies. US authors of a recent paper on the subject found that women represented only about 20% of the subjects in randomised clinical trials submitted between 2000 and 2008. They found no statistically or clinicially significant differences between women and men in outcomes with regard to viral load after 48 weeks. However, they did report significant gender differences favouring males based on subgroup analyses. ‘Mounting evidence indicates that metabolism of certain drugs varies in men vs. women, and side effects that interfere with adherence to these medications may also manifest differently,’ they said. Healthcanal.com Being gay can stamp you with certain generalisations. Matthew King objects to one in particular. When catching up with friends, turning on the television or flicking through a magazine, it’s very clear and undeniable that sex is a topic that smothers us. Being part of the gay community magnifies it even more and it can be overwhelming when sex is so easily accessible and forms part of your identity. The perception that all gay men have a heightened sex life is a stereotype that can affect the daily lives of men who don’t see it as a priority. The struggle to feel worthy is challenging enough for many of us without having to conform to a label that simply may not apply. We can’t deny there is a large
people affected by, living with and working in hiv from across the globe were asked to describe what the AiDs2012 conference theme meant to them.
Positive Olympic trampolinist delights gay Australian olympian Ji wallace has delighted the Australian hiv community sector by publicly revealing his hiv status in a recent letter to the Star Observer. Wallace, a trampolinist who won a silver medal at the Sydney 2000 Olympic Games, said he was inspired to make the public admission about his diagnosis after
opinion
seeing an interview given by US diver Greg Louganis about his battle with HIV and being a gay Olympian. So far, Ji has received 'literally thousands' of messages of support and gratitude and is encouraged by the response, vowing to fight the fear and stigma that still surrounds the disease. He is determined to show people that HIV is still here and that it's
not okay to be complacent. He also wants to get across 'that it is a disease where you can live a very healthy, very normal and functioning life.' At the recent World AIDS Conference, Elton John called for positive people around the world to step up and disclose their status publicly, to fight stigma and misperceptions about life with HIV.
Not that sexual
perception that gay men are focused on sex and want it whenever and wherever they can. It’s too easy to scroll open your phone to find somebody in your area who is looking to share a sexual experience. Of course this does not apply to all gay men, nor is there anything wrong with men who choose to have a highly active sex life, but it can become a very big problem for gay men like me who just don’t have a big desire to make sex a part of their weekly routine. This does not mean I’m an alien from outer space, who lives in a bubble without any human emotions or feelings, but fitting
into a society where sex is relevant and does form part of a relationship with a loved one, I do find it to be a struggle. It makes me feel anxious, afraid of ridicule and unaccepted.
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Body image and self-esteem have a close relationship with sexual confidence and being uncomfortable in your skin can cause stress and lead to an avoidance of having sexual experiences. I’m sure we all have fantasies and there are things in life we would like to participate in; however we simply don’t because it’s just too far out of our comfort zone. Sex just may not be your thing . . . and that’s okay.
Us prep guidelines released
As a follow-up to the preliminary guidelines regarding pre-exposure prophylaxis (prep) for men who have sex with men, the Us Centers for Disease Control and prevention have also issued interim recommendations for heterosexually active adults. Significantly, healthcare providers have been asked to ensure their patients are uninfected prior to prescribing them PrEP. This relates to cases of drug-resistant HIV variants which have been identified in people who have used PrEP during undetected acute HIV infection. Other guidelines released are similar to those for MSM and include targeting PrEP only to those at high risk; ensuring people know that it must be taken on a daily basis and that they are provided with regular testing and other key prevention services.
like us on facebook and get all our latest news and links. My situation is not unique. We all see sex differently. For some it involves penetration, for others it’s holding hands while falling asleep. And as the seasons change, our desire for sex fluctuates and may even evolve into something completely new. Sex doesn’t need to be defined nor does it need to define you, and it is pointless to criticise others because they aren’t into what you’re into. All I suggest is that we treat our peers and community the way we wish to be supported: with acceptance, not with ridicule. nMatthew King is 27 and lives in Melbourne. His article first appeared on samesame.com.au have an opinion? send it to pl@napwa.org.au
PHOTO: EASYBUY4U
Women poorly represented in HIV drug trials
apparently got rid of a reservoir of latent HIV, and continued ART protected new cells from infection. ‘It’s a form of pre-exposure prophylaxis (PrEP) on the cellular level,’ they said.
‘the field is moving fast,’ says sharon lewin, from monash University, one of our co-chairs at the next world AiDs Conference in melbourne in 2014. ‘while we don’t have a cure currently, we do have a better understanding of what we need to do.’
visConti Cohort
One of the things that makes HIV so difficult to cure is the way it can integrate itself into resting T-cells in reservoirs like lymph tissue, bone marrow and the spleen. In these places, the virus becomes latent (or sleeps) but if these cells are activated, HIV is released into the bloodstream and resumes viral production. Several cure approaches being studied at the moment involve activating resting cells to flush the virus out of hiding, making it vulnerable to antiretroviral drugs and the natural immune response. One international study — which Professor Lewin’s team has been recruiting for in Melbourne — is testing whether a chemotherapy drug called vorinostat, a ‘histone deacetylase inhibitor’, can disrupt this HIV latency in people who are on ART. US lead researcher of the University of North Carolina, David Margolis, described how his team collected resting CD4 cells from eight people who had fully suppressed viral load while on HIV treatment. After a single dose of vorinostat, participants had increased HIV RNA expression in resting CD4 cells and higher levels of associated biomarkers. His experiment demonstrated that it is possible for us to target and wake up these sleeping cells and that histone deacetylase inhibitors work as a class to do the job. The next step is to figure out how to apply this procedure to all latent CD4 cells in the body while protecting new cells from infection.
stem Cell trAnsplAnts Another exciting development was reported by Timothy Henrich, an infectious disease physician from Boston, who described how two men who underwent stem cell transplants to treat lymphoma now appear to be free of HIV. Unlike the widely reported case of Timothy Brown, the Berlin patient, these men received transplants from donor cells that were not missing CCR5 co-receptors; and they also received milder chemotherapy and no whole-body radiation. So, unlike Brown, this less toxic regimen enabled them to remain on antiretroviral drugs. Over time, the transplanted donor cells replaced the recipients’ own lymphocytes, and their HIV viral load became undetectable using even the most sensitive tests. As for HIV-DNA inside cells in blood samples, the researchers noted that genetic material was detected in the months following stem cell transplantation. While HIV antibodies are still detectable in both patients, HIV-DNA became undetectable
PHOTO: MEVANS
virAl lAtenCy
three steps closer to the cure Adrian ogier summarises three of the latest cure-related research findings presented at AiDs2012.
by day 200 in one patient and day 300 in the other. Are these patients cured of their HIV infection? While Henrich suggested the data are encouraging, noting the ‘substantial and sustained reduction in the HIV reservoir’ and that the ‘declining HIVspecific antibody levels provide further evidence for minimal persistence of HIV antigen’ are important findings, some key pieces of the puzzle are still missing. Unlike Brown, who has remained off HIV treatment for more than five years and has produced tissue samples lacking HIV,
the two patients under Henrich’s care have not stopped taking ART and do not yet have tissue samples available. These are necessary, Henrich explained, ‘to fully assess the extent of HIV reservoir reduction after stem cell transplantation.’ ‘We’re being very careful to refer to our patients as not being functionally cured,’ added Daniel Kuritzes, MD, a Harvard Medical School researcher who has been working alongside Henrich. Although the donor cells were not missing CCR5 co-receptors, researchers explained that replacing the old cells
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In the third study, Charline Bacchus and Asier Saez-Ciron from France looked at a group of 14 people — dubbed the VISCONTI cohort — who started treatment very early, on average within 40 days after they became HIV positive. An analysis of this group showed that after being on ART for a median of three years and then stopping treatment, they have all been able to control HIV for up to six years on their own. Like ‘elite controllers’ who can suppress HIV without treatment, the VISCONTI cohort all show small and decreasing viral reservoirs without being on ART. However, unlike elite controllers they all started off with much higher viral loads. They also have different HLA genetic patterns and their viral reservoirs are largely made up of short-lived T-cells, while long-lived cells that could harbour virus for many years contributed very little, the researchers explained. A small proportion of people with HIV — perhaps 5 to 15% — may be able to control the virus over the long term off therapy if they start treatment very early. ‘These results suggest that antiretroviral treatment should be started very early after infection,’ said Charline Bacchus. Scientists are continuing to study the immune characteristics of this group for clues as to why they do not need prolonged medication.
next steps Importantly, participants in the vorinostat and stem-cell studies remained on antiretroviral therapy, and only a treatment interruption will show whether they are able to achieve a functional cure. And unlike the Berlin patient, who required intensive and risky procedures to save his life, most HIV positive people who are suitable candidates for experimental cure approaches are on ART and are often in overall good health. Taking such people off HIV treatment to see what will happen raises new ethical concerns. IAS president-elect Françoise BarréSinoussi says that the Towards an HIV Cure initiative has established an ethics working group to address these issues. When asked when a cure might be expected, her colleague Steven Deeks offered a sobering but realistic perspective. ‘The barriers to a cure are far greater than barriers to antiretroviral therapy [in the late 1980s]. I think we will discover a bunch of hits, none will be curative alone, and eventually they'll move into combination therapy. Unless we get very lucky this is going to take well over a decade.’ Content for this article was condensed from various sources, particularly those on AiDsmap.com
THE POWER OF resilience re·sil·ience [ri-zil-ee-uhns] noun 2. ability to recover readily from illness, depression, adversity, or the like; buoyancy. Unlike dictionaries, psychologists vary in their definition of resilience with some saying it is less about actual recovery and more about ‘the ability to establish and maintain a stable equilibrium across and over time’.1 nevertheless, DAVID MENADUE investigates a trait we could probably all do with a little more of. PHOTO: ALVINGE
O
ne thing is for sure. Positive people know about resilience . . . particularly those of us who lived through the horror years of the eighties and early nineties. Just getting through that period — when many of our friends were dying and society was reacting with fear and hostility — took a lot of resilience. Even with much better prognoses, an HIV diagnosis today is still a big deal. There’s the initial shock, followed by wondering how you will be treated and what it all means for your health. Some people find it easier to adjust, while others — battling feelings of stigma, fear of rejection and uncertainty about
the future — find it extremely hard. According to the recent NAPWA stigma audit, a significant percentage of positive people in Australia feel that living with HIV is something to feel guilty or ashamed about. Forty percent also agreed with the statements that ‘most people think that a person with HIV is disgusting’ and ‘I have been hurt by how people have reacted to learning I have HIV’.2 Much of the stigma attached to being HIV positive occurs because we have either been treated badly in the past when the information became known or because we fear this will happen if we were to reveal it. One way to tackle this is to mount antistigma campaigns which expose
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the unfairness of it all. But it is also important to build the capacity of positive people to cope with negative comments by adopting a resilient attitude. help with BUilDing resilienCe For a number of years, the Bobby Goldsmith Foundation (BGF) in Sydney has held a range of workshops to help people with HIV build their skills in resilience. One of these, a four-day retreat called PosQuest, has been run in partnership with Petrea King from Quest for Life. Petrea has had a lot of experience helping people with cancer and other chronic illnesses and her groups have often included people with HIV. ‘Participants found some sections of the program to be
quite confronting . . . because we ask people to share their stories,’ reveals Peter Thoms from BGF. ‘This can bring up feelings of anger and guilt related to getting HIV but also about things to do with people’s upbringing, family, school and personal relationships.’ Peter believes that the way forward is to let go of the past and to change the view that ‘if only this hadn’t happened, my life might be OK’. ‘While it may be useful to understand why you have got to where you are today, and to try to prevent repeat behaviour or negative thinking, it isn’t useful to cling to the past,’ he says. The course suggests that participants live in the present as much as possible. But how people
actually develop a positive frame of mind varies from person to person. Some find sharing their story or writing it down helps. Others succeed through meditation, yoga and learning mindfulness techniques. For some, developing a more spiritual outlook on life is the key. Unfortunately, funding for the PosQuest course has been withdrawn, but people with HIV are still able to attend general Quest for Life courses (questforlife.com.au). rising from the Ashes BGF has run Phoenix courses for many years, helping positive people to identify their skills and explore how they might develop them to re-engage with the workforce or as a volunteer. They also support people to deal with depression by assisting them to attend workshops run by the Black Dog Institute. ‘People might just want practical advice on how to deal with “the system”,’ says Peter. ‘Some get very frustrated with housing agencies or Centrelink,’ he says, ‘because they see the bureaucracy as being stacked against them. Simple, practical tips on understanding the best path to deal with these agencies can help people feel less overwhelmed and disempowered.’ Peter has noticed that some people who have lived with HIV for a long time share a particular set of challenges. Many have left the workforce because of illness or the prospect of illness and have lost a lot of their previous skills and confidence. Some are too young to be out of the workforce, while others are dealing with the effects of early ageing and other health problems. ‘Many are socially isolated,’ he says. ‘They live in one-bedroom public housing where sharing is not possible and feel unable to engage with former friends or go out socially because of the cost or because they don’t feel accepted in those circles anymore.’ Many talk about a change in attitude towards people with HIV in the gay community. Younger gay men particularly are less aware that people with HIV are among them and less accepting when it is revealed. Many also talk of an ageist attitude that is sadly very prevalent on the gay scene. newBie views on hiv Vic Perri from PLWHA Victoria runs regular Phoenix workshops (quite different to the Sydney
courses) in Melbourne for people who are newly diagnosed or who have taken some time after diagnosis to be ready to deal with issues around living with HIV or to develop the confidence to join a group. ‘Many of the poz guys who come to my group have a strikingly common fear,’ reveals Vic. ‘They think they will die soon or have a dramatically shortened life.’ This is probably the number one concern expressed by members of Vic’s groups; followed by the worry that they may never have sex again, because they fear they may transmit the virus. He thinks it is probably understandable that HIV negative guys have not kept up with the latest on HIV treatments or know that many positive people are able to manage their sex lives, sometimes with negative partners. Most of them probably don’t realise that around half the positive people in relationships are with an HIV negative person. They are amazed when they find this out during the workshop. HIV is not talked about in their circles and most of them don’t know anyone else who’s positive. The group is conducted over a weekend and during its course a range of professionals come in to address people’s concerns. ‘The real “light-bulb moment” for a lot of guys is when an HIV specialist doctor tells them how effective current HIV treatments are,’ says Vic, ‘and that it can be just one pill a day with minimal side-effects.’ Sex and relationships are always a topic for discussion. Men in the groups worry that they will never find a partner or that only another positive person will have them. ‘Everyone hates the idea of rejection,’ says Vic, ‘and it just seems more likely when you have the virus.’ People have different views about the need for disclosing to a sex partner first up. Some believe it is a moral issue and the other person deserves to know. Others find that they can’t handle the rejection as well as they thought they could. The result is that they end up not telling anonymous, casual or one-off encounters and only consider it if they feel that some sort of relationship might develop. ‘I tell recently diagnosed people to be selective about whom they tell initially,’ says Vic.
Whether it’s sex partners, friends, family or workmates, Vic suggests you think about who really needs to know and who doesn’t. And if you don’t think you can handle a negative response to not do it straight away. He also has good advice for follow-up. ‘If you disclose to a potential partner who finds it difficult understanding the implications, bring them in to see an HIV peer support worker or even take them to your GP to help explain the relative risks of transmission.’ Vic thinks workshops like Phoenix successfully address the many misconceptions about what living with HIV will be like. ‘Unless people learn to deal with their often unnecessary fears, they may end up living a life of emotional isolation,’ he
possess certain key components to help them make that adjustment. Do they have a healthy self-esteem or an adequate way of coping with stressors? Are they in denial over any fundamental issues or at a loss to find ways to solve the problems they are confronting? ‘These are hallmarks of how resilient people are,’ she believes. There are external factors she looks for as well, including how strong their relationships are with their partner, family and friends. ‘If someone is isolated without a support network, they may have a harder time getting on top of things,’ Michelle says. She believes that people also need to be involved with some meaningful activity in their lives. It might be a job or being a volunteer or following a passion or hobby. Michelle sees many
People discover their own comfort level around disclosure and tend to find a level of self-acceptance about their diagnosis that lets them get on with life. ponders, ‘or worse . . . they may take a destructive path and resort to drugs and alcohol to cope.’ the CoUnselling option Groups are not everybody’s preferred way of dealing with things. Some people don’t want to tell their story in front of others and prefer to have one-onone counselling to work through their issues. Michelle Earle is an experienced HIV counsellor at the Alfred Hospital in Melbourne. She thinks the objective of counselling should be to help people make a healthy adjustment to life. ‘Everyone needs ballast to keep afloat in a storm,’ she says. ‘We all need something to deal with the stresses that life throws up for you.’ When she starts to counsel someone, she looks to see if they
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people in her practice who have great potential but lack the vehicle to show it in their lives. ‘Counselling can help awaken some of these possibilities,’ she says, ‘providing people are able to sort out the things that are holding them back.’ Doing it yoUr wAy We all have different ways of living with HIV. Disclosing your status and discussing its implications with just a few trusted friends may be enough to give you the level of acceptance you need to be a confident individual. Others don’t care who knows . . . and this has been my approach — albeit over a number of years gradually building up the courage to let family, workmates and sex partners know. For me, this technique has decreased any internalised stigma I have felt
about having HIV and any thoughts that I was hiding a big secret. But such an approach will not work for everyone. Michelle Earle claims that most people she sees show quite a high level of resilience in adjusting to an HIV diagnosis over time. ‘People discover their own comfort level around disclosure,’ she says, given that there are some forums where it might still be problematic — such as the workplace or in certain family situations. ‘People tend to find a level of self-acceptance about their diagnosis that lets them get on with life.’ NOTES
1 Cichetti D and Garmezy N (1993). Prospects and promises in the study of resilience, Development and Psychopathology 5 (04):497-502 2 NAPWA Stigma Audit 2011. The sample was of 697 HIVpositive people in Australia. Thirty-six percent agreed with “I feel guilty because I have HIV”; 35% disagreed with “I never feel ashamed of having HIV”. See www.napwa.org.au if you would like some help to deal with the various stresses related to living with hiv (as well as other things), some of the approaches mentioned above might help you build your own capacity for resilience. you might also like to check out some of these resources: n for the newly DiAgnoseD Many AIDS Councils and PLHIV groups have advice for the newly diagnosed on their websites. Also see the booklet Next Steps, which is available from these agencies or online at http://napwa.org.au/ resource/next-steps n for people in positivenegAtive relAtionships Positive Life NSW has just released its second resource for people in serodiscordant relationships. Check out SERO DISCO 2 at http://sd2.positivelife.org.au/ n for people DeAling with hiv AnD Ageing Ahead of Time is a comprehensive booklet available from HIV agencies or online at http://napwa.org.au/resource/a head-of-time-a-practical-guideto-growing-older-with-hiv
Why treatment is good for you most people on treatment are on a combination that has reduced their viral load to an undetectable level and keeps it there. And this is a good thing. it means their immune systems are not being destroyed by hiv and they are not going to progress to AiDs. neil mcKellar-stewart thought it was time we looked at all the health benefits to us of being on treatment. so, he tracked down the research and here it is.
1. It extends life Multiple studies of large populations of people living with HIV (PLHIV) both on and off treatment have all conclusively demonstrated that antiretroviral therapy (ART) does indeed prolong life. By studying the past health records of 4000 PLHIV in Denmark, they estimate that prior to 1996 the probability of a newly diagnosed 25-year-old surviving for 15 years without effective ART was about 1 in 7; and that about two-thirds of PLHIV would die within 10 years of being diagnosed. The study was conducted in 2005 and estimated that of those who had been on the best treatments available up to that time, about 80% would survive 25 years or more and have a life expectancy only 10 years less than the general community. Similar results came from a much larger study of nearly 45,000 PLHIV who were on treatment from 1996 through to 2005 in Canada, USA and Europe. This study estimated that ALL IMAGES:TALAJ
a 20-year-old receiving effective ART from 2003 would have a life expectancy of 50 years and that 86% of all PLHIV on treatment would survive for at least 25 years. Significantly, this study also showed that these benefits were progressively lost as PLHIV started ART at lower CD4 counts. Yet another large study of nearly 63,000 positive people in the USA and Europe compared those who commenced treatment when their CD4 counts were greater than 500 with those who didn’t. They estimated that the risk of death for those on treatment was 23% less than for those who were not. (Note that this is for people who started with counts above 500 CD4 cells which is currently the maximum recommended level for starting treatment in Australia.) The study also showed that the lower your CD4 count at commencement of treatment the greater your probability of
avoiding death compared to untreated PLHIV at the same CD4 count; and shows that treatment clearly gives benefit at every CD4 level.
A more recent study from the national hiv database in the netherlands indicates that the life expectancy of plhiv who receive timely and effective Art is now approaching that of the general community. PositiveLiving l 8 l SPRING 2012
The message from all these studies is clear. HIV treatment reduces your risk of dying; and starting it earlier (at least when CD4 counts fall below 500) extends your longevity. The International Antiviral Society-USA Panel Antiretroviral treatment guidelines for adult HIV infection, released in late July, recommends treatment for ALL adults with HIV, regardless of CD4 count. These are the second set of US guidelines to make this recommendation this year. If you are currently not treating, this information should be good enough reason for you to start the conversation with your doctor. If you’re still not convinced, then read on. There’s a growing body of research evidence showing the other benefits as well.
2. It reduces
inflammation
HIV is far more than a disease that slowly destroys the body’s immune defences, ultimately
resulting in AIDS and an untimely death. HIV is also a disease of chronic, ongoing inflammation that puts the immune system in a constant state of ‘activation’. This immune activation starts from the time when HIV first infects a person. At that time HIV attacks the body’s lymphatic system, especially in the lower gastrointestinal tract or ‘gut’. It destroys many of the CD4 cells located there and changes the structure of the lymphatic tissues. The cells lining the gut are killed off and we are left with a less effective barrier to keep microbes or ‘germs’ out of the body’s circulation system. The immune system is now stimulated and has to work harder to deal with germs that enter the body. This inflammation and immune activation has serious consequences. We only need to look at what happened during the SMART study when they compared people who took treatment breaks with those who didn’t. During the study, it became clear that those who stopped treatment had rapidly
increased levels of inflammation and blood clotting or ’coagulation’ — conditions which are both strongly related to death and to disease events in the heart, circulation, kidneys and liver. Those who stayed on treatment
had lower levels of this type of inflammation and less illness, whereas those who interrupted their treatments had 1.7 times more risk of developing one of these illnesses. Needless to say, the SMART study was terminated early. One way to visualise all this is to imagine a skin injury. At the entrance of the wound, the body mounts an immune response. The area becomes inflamed — red, hot and swollen — and may produce pus. This acute inflammation is a good thing. It shows that the immune system is dealing with an invasive microbe. HIV causes a similar sort of inflammation which is longterm, low level and unseen or ‘asymptomatic’, but it results in a similar sort of immune activity. When you have HIV, your body produces molecules or ‘cytokines’ which inflame blood vessels and disturb a range of metabolic processes. This may contribute to why we have an increased risk for diseases associated with inflammation such as cardiovascular disease, type 2diabetes, bone and kidney disease, neurological impairment, and psychological conditions such as depression and anxiety, and fatigue. Treatment reduces inflammation and our risk of getting these diseases.
3. It improves quality of life
Starting treatment improves your quality of life—both physically and mentally. Positive changes to people’s physical health start as
early as one month after commencing ART, and changes to mental health after about four months, according to data they collected from studying over 1000 PLHIV from across the USA. Those with the highest adherence levels showed the most striking progress in the study; with every quality of life measure showing an improvement — 23% in physical health, 17% in general health, 14% in energy, 14% in social functioning, 11% in emotional life, and 7% in mental health. The study included a range of PLHIV including women, injecting drug users, and people of lower socioeconomic status. All had advanced HIV infections with quite impaired immune systems — average CD4 counts of 230 and mean viral loads of around 90,000 copies. At the start, they had quality of life scores similar to those seen in other studies of PLHIV whose disease was established, so these are significant improvements and cannot be put down simply to chance.
In another study, 500 positive Brazilians were surveyed four months after they had commenced treatment. Those who rated their quality of life as good or very good after starting reported improvement in the following areas: energy levels, physical mobility, ability to work, memory/ability to concentrate, physical appearance, self-esteem, personal relationships, and their sex life. The SMART study also included a sub-study on quality of life and found that every measure was better for those who remained on treatment compared to those who took breaks from it.
The greatest improvements were seen in those who started treatment for the first time and stayed on it for the three years covered by the study. They saw improvements in their general health—both physically and mentally—including their physical functioning, emotional health, energy and social functioning. The STACCATO trial also examined the effect of treatment interruptions on the quality of life of around 250 Thai participants who all showed significant levels of anxiety, depression and stress. Many of them received HIV antiretrovirals which have now largely been discontinued because of their less-favourable side effects. Yet, despite this, those who stayed on treatment reported significant improvements in their mental health. Similar results were reported in the AIDS Clinical Trial Group (ACTG) 5170 trial which included 167 PLHIV who had all been on stable ART for an average of 4.5 years. The group had good immune status — their median CD4 count was 833 and 82% of them had viral loads of less than 400. Over two-thirds were on older protease inhibitor-based treatments combined with older nucleoside reverse transcriptase inhibitors (NRTIs) (including AZT and stavudine). Some of the drugs given to these PLHIV have significant side effects and are now rarely used in Australia. All these participants interrupted their treatment and were followed for two years. Quality of life deteriorated for about one-third of the participants and they resumed treatment. Research has demonstrated that such treatment interruptions are not safe or desirable, and in all the studies indicated above led to reduced quality of life for some, if not all the participants. These findings confirm that starting and staying on treatment is the best strategy to improve your quality of life both in the short term and into the future. As we develop better tolerated drugs with fewer side effects and
PositiveLiving l 9 l SPRING 2012
simpler dosing regimens these improvements seem destined to improve.
4. It reduces
depression and fatigue
There is some good evidence to suggest that treatment reduces depression and fatigue — which makes sense as depression is increasingly recognised as a disease associated with inflammation. Several trials have shown that treating HIV reduces depressive symptoms in some people. One looked at the effects of efavirenz (one of the drugs in Atripla) on key neurological markers in around 300 PLHIV who had never treated previously. The trial also included PLHIV who received treatments other than efavirenz. It showed that depression decreased regardless of what drugs were taken and that participants showed improvements in key neuropsychological measures, including motor skills, sustained attention, response speed, and conceptual thinking. There is good evidence to suggest that when PLHIV get their HIV under control their mental health improves. This was demonstrated in 2003 with a large US study of nearly 2500 people. Those who started treatment showed significant improvements in their mental health despite them being on older drugs with considerably more side effects than the ones we use today. A more recent study in the Netherlands found that levels of depression are directly related to viral load, which explains why depression is lower for those on effective treatments. This was demonstrated over a decade ago in large groups of PLHIV in Australia, USA and Canada. Similar effects are reported from focus groups of PLHIV starting treatment and from community surveys of PLHIV in Australia. Depression is still an issue for PLHIV as community surveys and research studies indicate (including a recent national survey from Spain), but treatment can and does seem to improve the degree of depression people experience.
The effect of treatment on levels of fatigue has not been as well studied. However, there is a growing body of evidence from focus groups and workshop for PLHIV that treatment improves energy levels and reduces fatigue. It is thought that inflammation contributes to fatigue in a range of chronic medical conditions, including cancer, multiple sclerosis, type 2-diabetes and chronic fatigue syndrome itself. A recent US study of more than 400 people with fatigue (some of it classified as ‘chronic fatigue syndrome’) found that there was a consistent association between level of inflammation and fatigue
symptoms even after taking into account whether people were depressed. It seems that the relationship between these three: depression, fatigue and chronic inflammation is complex; however, it would be reasonable to expect that reducing inflammation by effective treatment of HIV would improve energy levels, and at the same time reduce depression. There is much more to be said on the benefits of treatment for improving your cardiovascular, brain, kidney and bone health, and for reducing your risk of cancer. We’ll discuss these in upcoming issues of Positive Living. If you are on treatment, then congratulate yourself. You’re doing the best thing you can for your health right now and into the future. If you’re not currently treating or you’re unhappy with the combination you are on, now is the time to start a conversation with your doctor about which treatment combination might be right for you. The research on which this article is based is available as an appendix online at napwa.org.au/pl
Billy from Cairns writes: A couple of my mates have just been told they have gonorrhoea and were surprised because they didn’t have any symptoms. Now I think I might have it. Does it show up on your regular blood results or do I have to have a special test done? Dr louise replies: Thanks for your question, Billy. Your routine HIV blood tests will usually include a blood test for syphilis. The other bugs need special tests. But they’re easily done. Just a urine sample, a throat swab and an anal swab test are all that is required to test for chlamydia and gonorrhoea. Neiserria gonorrhoea is a bacteria that can be easily transmitted during oral, anal or vaginal sex. The time from being infected to showing any symptoms can be pretty quick. In 3 to 7 days you may notice a thick discharge from your penis or find it painful to urinate. However, if you were infected in the throat or anus you probably won’t have any symptoms. But you can still pass it on. Many sexually transmitted infections (STI) go unnoticed because they don’t have any symptoms. And any STI increases both the risk of you transmitting HIV and the risk of someone who isn’t positive acquiring HIV. That is why it is important to get tested for them regularly. There are some excellent guidelines available for men who have sex with men. They give you it was while peter watts was introducing Joe to some of the services they offer at queensland positive people (qpp), that they got to talking. Diagnosed with hiv some years ago, lately Joe had been struggling with his health and seemed, he said, to be constantly and overwhelmingly tired. ‘Sometimes I just don’t have enough energy to stand up in the shower,’ he told him. That sparked Peter’s attention and he quizzed him a bit more. It turned out his doctor was treating him with B12 injections. A lack of vitamin B12 could well be the cause of his extreme fatigue; however, Joe maintained that the onset of tiredness came every day at the same time: 30 to 40 minutes after taking his HIV PHOTO: GLOBALP
DoCtor loUise Answers yoUr qUestions
what’syourproblem? PHOTO: LIVING IMAGES
i might have that, too
a good idea how often you should get tested for what, depending on the number of partners and the sort of sex you have. They are an easy read and you can find them here: http://stigma.net.au/ resources/stigmA_msm_ testing_guidelines_ 2010.pdf Gonorrhoea is easily treated with an injection of an antibiotic called Ceftriaxone. But it is extremely important that all your sexual partners from the last three months know if you have been diagnosed with gonorrhoea. That way they can get tested and treated as well. Wearing condoms is still the best way to prevent you from getting most STIs.
treating a herpes outbreak Jenny from the ACt writes: I recently had a genital herpes outbreak—something that hasn’t happened for years (in fact I had almost forgotten I had it!) Is it likely I’ll now have more outbreaks or is this just a one-off? I was a bit run down and under some stress at work. I don’t really feel like adding another pill to my regime but should I? Dr louise replies: Thanks, Jenny. Herpes is a very common infection and antiviral herpes medications, like Valtrex, can
help manage the symptoms. They are very effective and very safe, even when you take them for prolonged periods. Mild and infrequent recurrences can be treated with short (e.g., two-day) courses. This is called ‘episodic’ therapy. But you should start treatment at the first sign of symptoms. If you catch it early enough—when you first notice itching or redness—it can sometimes prevent the full development of herpes lesions. If you are experiencing more frequent outbreaks, you can take medication daily as ‘suppressive’ therapy. As well as reducing outbreaks, this will reduce the likelihood of transmitting it to
TALES FROM THE NETWORK there is a network of workers located at AiDs Councils and plhiv organisations around Australasia who understand the variety of treatment issues faced by positive people. we call them the treataware outreach network (ton). treatments. Some HIV treatments can cause fatigue, but this was an extreme case and Peter suggested it might be a combination of the two factors. But Joe was adamant. Recently, he skipped a dose just to see and, sure enough, the bout of fatigue hadn’t happened. Peter raised adherence as an issue but Joe reassured him that skipping doses was certainly not his usual practice. They discussed changing drugs and Joe got a bit worried.
Resistant to all drugs in the NNRTI class —including mainstays: efavirenz and nevirapine — he believed his prospects were slim; but Peter reassured him that it’s very rare that anyone runs out
PositiveLiving l 10 l SPRING 2012
of treatment options these days. It was then that Peter suggested diet as a possible third cause of his fatigue. Joe liked this idea, particularly when he pointed out that it may not be about removing things he liked to eat, but about adding lower glycaemic foods and more nutrient-dense foods. They
your partners. Even when there are no symptoms, virus particles are shed from the skin and can be transmitted to others. Genital herpes is caused by the Herpes Simplex Virus (HSV). There are two strains of the virus and either can cause outbreaks in the genitals. But HSV 2 is more common. HSV 1 often causes the common cold sore, but can cause lesions in both areas. Accurate diagnosis is recommended and the best way to confirm you have the virus is from a swab taken from an ulcer or lesion. Symptoms vary but usually include recurring sores or ulcers on the genitals, perineum, perianal region or buttocks. Sometimes the first true outbreak can be quite severe and you get multiple ulcers, fevers, enlarged lymph nodes and muscle aches. Initial herpes infections should be treated for up to 14 days to reduce the severity and duration of the initial episode. After that, outbreaks may be infrequent or come quite often. Even though herpes is a common infection, many people don’t talk about it. If you have questions ask your healthcare professional or check out a rich source of professional, accurate and up-to-date information at the Australian HSV Management Forum online at ahmf.com.au Keep your questions under 100 words and email them to pl@napwa.org.au. n Dr Louise Owen’s 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.
talked about the sort of foods he could snack on throughout the day to keep his energy up. Joe thought this would be a good first step and accepted Peter’s referral to a local HIV dietitian. He also realised how much his fatigue had been limiting his social life. So, encouraged by Peter, is planning to attend some of the peer functions that QPP are running in his area. They also plan to follow-up after his doctor’s appointment to talk more about his treatment options. n Peter Watts is the Health Promotion and Treatments Officer with QPP in Brisbane. Call him on 07 3013 5555 or freecall 1800 636 241 (within Queensland).
stateOFMind the ColUmn where therApists reCommenD teChniqUes we CAn employ to DeAl with the symptoms of Anxiety or Depression
In this issue, ruth hennessy talks about
Cognitive behaviour therapy alcohol similarly’. Numerous studies have shown that people who experience depression have negative and unhelpful thoughts about themselves, the world and the future (e.g., ‘I am unworthy, the world is terrible and the future looks hopeless.’) These negative thinking patterns are probably both a symptom of depression and an underlying vulnerability that predisposes someone to depressive episodes. For example, if you think ‘I am a failure’ this might trigger emotions of sadness or hopelessness. These emotions then motivate behaviours such as withdrawal and inactivity which then make you feel tired and irritable and shape more ongoing negative thinking. In this way, depression reinforces and maintains itself and can lead to what is called the ‘vicious cycle of depression’. CBT suggests that we can learn to change our negative thinking and related behaviour toward feeling ‘better’. While particular thinking patterns place people at risk of developing depression; CBT uses techniques to target these vulnerabilities, and one of these is called ‘cognitive restructuring’. The objective in cognitive restructuring is to challenge this unhelpful thinking and to develop more realistic ways of thinking. It involves testing your negative assumptions and the way you might exaggerate your difficulties. In CBT, people are taught to identify and review unrealistic beliefs , e.g., what is the evidence both for and against
PHOTO: CLARKANDCOMPANY
lAst weeK my worKplACe experienCeD CompUter proBlems AnD i DisCovereD this ArtiCle hADn’t sAveD. ‘NO! All that work gone! I can’t start again. I have too much to do and NOW the computer keeps freezing! %#@&! If I don’t get this done I will have to leave the country and move to Iceland where there is no beach and I like the beach . . .’ Okay, I may have exaggerated the last bit. But you get the idea. Did I sound panicked and annoyed? Well, I was. From a cognitive therapy point of view, I was ‘catastrophising’ — thinking along a theme of worse case scenarios in response to stress. How did I deal with this stress? I whinged to a colleague. Their response? ‘How annoying, but I am sure you can remember what you wrote so it won’t take long to rewrite.’ Empathy and rationality. It was not the end of the world and I needn’t start packing for Iceland. The more I focused on what I could do rather than what had happened, the more time I had to rewrite this article. And yes, it was a bit faster writing it AGAIN . . . (let it go, let it go.) I used cognitive behaviour techniques to address my ‘catastrophic’ thinking. Cognitive Behaviour therapy (CBT) is the most widely practised, evidence-based psychological treatment. It is used to treat everything from depression, anxiety and bipolar to eating disorders, chronic pain and alcohol and drug dependence. While it may be delivered in different forms and levels, the fundamental strategies are always the same. CBT proposes that how we think about a situation and what we do have a significant influence on how we feel. About one in four people will experience depression. There is no single cause of depression and it is generally viewed as a mix of genetic, chemical and environmental factors. One environmental factor might be how we have learnt to cope with life’s difficulties. Sometimes we can even see how this came about, e.g., ‘My mother used alcohol to numb pain. I use
my beliefs? What are some other perspectives? Another source of change in CBT is ‘behaviour experimentation’. CBT logic suggests that if we behave differently we will feel differently. So, people are simply encouraged to do things differently. For example, research is clear about the benefits of activity in treating depression. In fact, the lift in mood you get with exercise is as good as any antidepressant. This is not only because of the ‘feel good’ chemicals we release during exercise but also the shift in focus we experience. We focus on the activity, not on our unhappiness and ‘feel’ satisfaction at doing something healthy. Here are a couple of snapshots of CBT at work:
peter says he ‘hates being gay’ because ‘all gay men are shallow as they are only after sex’. He can easily find examples to support his beliefs—media, internet sites, unwanted approaches, etc. He feels angry at himself (for ‘being gay’), at the ‘gay’ world (for ‘being shallow’) and sadness at the thought of ‘being alone because I am different’.
PositiveLiving l 11 l SPRING 2012
Peter responds defensively and angrily in social situations. However, he says he wants to be less angry so he agrees to try doing the opposite of scowling and to practise ‘acting/mimicking feeling less angry’. Although he feels like he is grimacing, he plasters a smile on his face. He also agrees to actively look for examples contrary to his beliefs. He discovers he can easily find examples of ‘non sexseeking/non shallow’ gay men if he stops logging onto internet sites and looks elsewhere. Peter is surprised to find these strategies help lift his mood. Energised, he agrees to attend a gay men’s yoga group and develops a friendship. Although his friend pursues him for sex, their shared interests and intellect encourage the friendship. By engaging in less isolating viewpoints and behaviours, Peter feels less angry and alone.
mArtin has a (non-HIV related) degenerative neurological disease that leads to loss in physical movement and he has begun to struggle with anxiety. Any physical mishap and his mind races with alarm: ‘Is my
disease getting worse? Is this the downhill slope?’ Visions of potential future incapacity overwhelm him and he feels helpless. Daily experiences are becoming unpleasant. ‘Cognitive restructuring’ suggests he answer his own fears, test their truth and deal with the answers. So, he sees his specialist regularly and his brain scans show no significant change. He is reminded that everyone will fumble at times. Upon reflection, Martin decides that many fumbles are probably a normal part of ageing rather than a sign of deterioration; and that he can accept ‘a fumble’ as just a fumble and not have to add any fearful meanings and generate panic. It was also suggested that his future-based thinking was encouraging him to live his prognosis prematurely. The rational mind recognises the present moment as ‘the only place we can act’ . . . so, he agrees to practise bringing his attention to the present. The following are Martin’s words and are a wonderful example of a resilient focus. I was noticing some pretty normal ‘stuff ups’ for a man of a certain age, but given my prognosis, I was letting these little annoyances cloud my thinking. I was seeing them as the arbiters of the fate I will have to face. It is early days yet, but rather than thinking about what may be going to happen somewhere down the track, I find myself practising bringing myself back to the moment. I walk most mornings and enjoy so many little things on these excursions. I used to take these moments for granted. But these are the simple things of life . . . and in the end they are the fabric of our life. n ruth hennessy is a Senior Clinical Psychologist and the Psychology Unit Manager at the Albion Centre in Sydney. She has extensive experience counselling people with HIV and training healthcare workers in the sector both here and overseas.
PHOTO: GILLESD
i gUess i wAs AlwAys relUCtAnt to stArt treAtment. My thinking was shaped by my own fears and doubts and the friends and peers who informed me. I didn’t really know anyone with HIV before my diagnosis and never kept an eye on what was happening behind the scenes. Most people I knew in Sydney moved in the party/drug scene and were suspicious of the whole thing. Maybe they didn’t wanna know? Maybe they didn’t wanna let it spoil the fun? When my diagnosis hit in 2000, I didn’t know what to believe. Unaware of any treatment advances, I took it as a death sentence. My consulting GP gave me a brochure about treatment options but I assumed it was experimental stuff and threw it away. Other HIV physicians I met at the time were far from informative or encouraging. They were critical and judgmental and fuelled my belief that it was the ‘end of the world’, so I didn’t go back. The only knowledge I had of HIV treatments was through a messed-up partner who thought taking an HIV test was foolish in the first place. He wasn’t giving up his diet of crystal meth for HIV drugs. He said his mate was positive and doing fine without them: ‘he drinks beetroot juice all week and parties on crystal all weekend.’ I wanted to believe it was just a benign illness but I knew it wasn’t. The seroconversion knocked me on my arse for weeks and my health never fully recovered. I moved to Melbourne after that and had my first contact with an HIV doctor in over a year. I rocked up saying I just wanted to monitor the virus, explore my options and that I’d only take the meds if absolutely necessary. He ran some tests — viral load 50,000, T-cells 350 — and was adamant I begin treatment right away otherwise I’d have AIDS within a year. I thought he was being alarmist and seemed more concerned with my infectiousness than my wellbeing. I felt pushed around. So, I contacted the Positive Living Centre, sought counselling, started yoga and meditation. I
WHEN PUSH COMES TO SHOVE Why do some of us refuse treatment? And how far will we go before we finally relent? JAMES MAY tells us his story.
adopted peak nutrition and a healthy lifestyle. I saw a naturopath who gave me potions that resolved a few symptoms. The blood tests played on my mind but I felt physically well so I got on with life. My visits to GPs were always confrontational. They weren’t impressed that I’d taken matters into my own hands. I told them I was concerned about the toxicity of the meds and I didn’t want to be driven by fear. I wanted to have control over my body for as long
as possible. There was no meeting each other half way; so four years after the diagnosis I ceased contact with them. I surrounded myself with people who supported my choices — positive people who were doing things a similar way. It was great but it brought its own challenges. Life revolved around my health and wasn’t much fun. It felt a bit competitive, too. No one wanted to be the first to ‘crack’ and go on the meds. We tried coffee enemas, juice fasts, wheat/dairy/
sugar-free diets. We boiled yucky vegetables, drank stinky potions. I danced around living rooms with women with cancer and eating disorders, beating drums and chanting. Fatigue and skin infections cropped up but most of the time I felt healthy. I guess I was hoping I could stay on top of HIV without drugs. ‘It was all in the mind,’ I kept telling myself. By the time things started to unravel, this idea was so ingrained in me that it was impossible to let it go. I saw
taking the meds as a failure. I couldn’t face defeat. And in some strange way, I thought I didn’t deserve help. Going on the meds seemed harder to face than the diagnosis. Six years down the track I started to experience chronic fatigue, severe night sweats and weight loss. I could hardly eat or sleep with the acute anxiety and depression that came with it. I felt like I was going round the bend. Some weeks later I was hauled off to emergency with HIV-induced psychosis. I had ten CD4 cells, highly active PCP (Pneumocystis jiroveci pneumonia) and MAC (Mycobacterium avium complex). It was almost impossible to swallow any meds at that stage. My first combination messed with my kidneys but the next worked fine and I’ve been on it ever since. Taking it relieves some of the burden that I felt going it alone and the fear of getting sick. In many ways, it’s made life easier. I get a few side effects but they respond well to complementary therapies. Although I gained a lot of willpower and faith, I wouldn’t wish getting sick on anybody. The meds helped pull me through that crisis and continue to sustain what is a good quality of life. Treatment is no magic bullet. Living well with HIV takes effort. So, I still put a great deal of time into yoga, gym and meditation. The emotional burden remains. But, despite the tough times I value the personal development that has come from living with HIV. I do believe in freedom of choice, especially regarding your health; but people need to be informed. HIV health educators need to make sure there is accurate information in the public domain to break down myths around HIV and treatment. HIV physicians need to be careful and compassionate in the way they communicate with us about our treatment options. People need to feel like they have a voice. It made a huge difference when I found a GP and others in the sector who didn’t scoff at my beliefs. We need to feel empowered and make our own decisions.
I surrounded myself with people who supported my choices — positive people who were doing things a similar way. It was great but it brought its own challenges. PositiveLiving l 12 l SPRING 2012