PositiveLiving A mAgAzine for people living with hiv l winter 2012
When to treat The ongoing conversation
plus Dilemmas in the bedroom and Prevention gets topical PositiveLiving l 1 l WINTER 2012
ISSN 1033-1788
EDITOR Adrian Ogier
(adrian@napwa.org.au) ASSOCIATE EDITOR David Menadue CONTRIBUTORS Jane Costello, Dimitri Daskalakis, Curt Mason, Neil McKellar-Smith, Louise Owen 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: September 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 AND PAGE
5 RAFAL GAWEDA
prep effeCtive even with imperfeCt AdherenCe Treatment as prevention and discussions around PrEP figured in a number of sessions at CROI. An analysis of adherence data from the results of the PreExposure Prophylaxis Initiative (iPrEx) was extensively discussed. iPrEx, is a large ongoing study that uses Truvada (tenofovir and FTC) to prevent the acquisition of HIV by HIV negative gay men. The initial results, released in late 2010, demonstrated that the HIV infection rate in those who took PrEP was reduced by an average of 44%, compared with those given a placebo. However, the infection rate was reduced by 73% for those participants who, by self-report and pill count, took the drugs more than 90% of the time. During the study, men were counselled in safer-sex practices and on average they reduced their sexual partners from 18 in the previous three months from the start of the study to two in the previous three months at the end. So, data suggests that PrEP is not only effective in reducing HIV transmissions in gay men (some of whom had high-risk behaviours) but also in reducing the number of partners they have. CROI presenters reported on a detailed analysis of drug levels in blood and immune cells from a sub-set of iPrEx participants — some of whom remained HIV negative (including some who reported instances of receptive anal intercourse) and some of whom became HIV positive. The levels suggested that a minority of men (perhaps 18%) actually took their drugs as prescribed (a daily dose throughout the week). So, adherence was far from perfect. Taking a single dose for at least four out of seven days in the week resulted in metabolised tenofovir drug concentrations within cells sufficient to theoretically reduce the risk of HIV infection by at least 90%. The statistical analysis also indicated that perfect adherence would result in 99%
Spotlight ON SeAttle the 19th Conference on retroviruses and opportunistic infections (Croi) was held in Seattle in march. here are some important highlights. reduction in risk of infection. There are, however, limitations to this study. It found that in the three months prior to new seroconversions, drug levels were consistently low; however, it was not able to determine what drug levels were at the time of infection. Additionally the actual doses taken by participants would have varied significantly from what they reported as an average. It may be that adherence was good when men were having sex and not so when they weren’t. The study did not record that level of detail. Additionally, the actual levels of drug that are calculated as protective were based on a small study called STRAND which looked at drug levels achieved by taking tenofovir on two, four or seven days in the week over a sixweek period. The research reported at CROI looked at drug levels in iPrEx and what was protective, and compared those to the levels found in the STRAND trial, and calculated that taking the drugs four days in the week would provide a high level of protection. However, this analysis does not take into account the number or types of sex practices, and whether sexual partners might have been HIV positive. These new data confirm what is already known about tenofovirbased PrEP. Providing it achieves sufficiently high levels in blood and immune cells, it will confer
PHOTO: FERNANDOAH
PositiveLiving
significant protection, perhaps as high as 95%, for sexually active gay men. A wArning to monitor And treAt high blood preSSure In a large cohort study in the US, the blood pressure of 82,490 people was monitored and PLHIV were identified and matched with similar people in the study without HIV. Participants were grouped according to their systolic blood pressure (SBP): normal, prehypertensive (SBP 120-139mmHg), controlled hypertension (SBP <140mmHg on blood pressure medicine) or uncontrolled hypertension (SBP≥140mmHg). All the participants were free of diagnosed cardiovascular disease. Everyone was followed for an average of 4½ years, during which time 443 people had a heart attack. In every SBP category those who were living with HIV had consistently higher rates of heart attack than those who were HIV negative. Those PLHIV who had mildly elevated blood pressure (prehypertensive) and were not taking any medication to reduce their blood pressure were 1.7 times more likely to suffer a heart attack, compared to people who were HIV negative and had a normal blood pressure. Normally, people who are prehypertensive (mildly elevated blood pressure) are encouraged to make lifestyle changes to reduce
their risk of heart attack. These findings suggest that PLHIV need to try getting their blood pressure down to normal levels to reduce risk of heart attack. This may not be possible through lifestyle changes alone (losing weight, reducing salt, exercising and quitting smoking). People with HIV might need to be treated earlier with antihypertension medications. In fact, PLHIV may need to aim for targets similar to those used for renal or diabetic patients, where target blood pressure is below 130/80mm Hg. The reasons for this were not examined, but may be related to inflammation caused by HIV and not being on effective HIV treatment. SwitChing to rAltegrAvir good for boneS Results from the Australian TROP Study looked at the changes in bone mineral density (BMD) after switching from tenofovir to raltegravir in an effective treatment regime that contained a boosted protease inhibitor. The study’s 37 participants had diagnosed bone disease (osteopenia or osteoporosis) in their spine or neck of the femur and had undetectable viral load for at least three months. Almost all (97%) were men who averaged 49 years old and 15 years positive. Their average time on tenofovir was three years. The participants were followed for 48 weeks, at the end of which they had DEXA scans of their spine, hip and femur, and had biochemical markers of bone activity measured. After 48 weeks BMD showed significant increases in all areas. Levels of biomarkers of bone turnover decreased consistent with increases in BMD, and no participants sustained fractures during the study. These are good results for people who have signs of decline in bone health; however, the study was limited as it only followed people for 48 weeks after the switch.
Mailbox
ContributorS (FROM LEFT)
Jane Costello reports from a symposium on the prevention needs of positive women l dimitri daskalakis tells the tale of how information, treatment and support work best together l Curt mason introduces us to ‘mindfulness’ in our new column on tackling depression and anxiety l david menadue addresses two sexual dilemmas: unprotected sex and sexual dysfunction l Adrian ogier brings you news on microbicides, PrEP and when to treat l dr louise owen answers a positive woman’s question about starting treatment
PositiveLiving l 2 l WINTER 2012
I've been receiving Positive Living for some years now whether I've been living in Sydney, Perth and now in central Victoria. Just want to congratulate you on your publication and particularly found the last autumn 2012 issue interesting and relevant. It was highly readable and useful for my health and well being. Thanking you and glad you guys are around. Rob Hewson, Victoria (Your feedback is much appreciated – Ed.)
THENEWS
new once-a-day combo pill
Superinfection risk higher than imagined the risk of becoming superinfected (contracting another strain of hiv to the one you have already) may be as high in the community as the risk of contracting hiv, according to a paper released in february. Superinfection can be difficult to detect, claim the writers, and is undoubtedly underdiagnosed. However, many superinfections are unlikely to be clinically relevant. Studies show wide variations in the incidence of superinfection, from no detected cases to rates close to those of HIV infections in the background
population. This is due to wide variation in several factors including laboratory methods, sample timing and frequency, HIV-1 subtype, ongoing risk behaviour and ART use. Seroconcordant partners with no differences in HIV resistance pattern can rest assured, the writers advise, unless one individual develops new, significant resistance. Those with an unexpected, unexplained jump in viral load levels should undergo repeat resistance testing if they are at risk of superinfection. co-infectiousdiseases.com
like this are proving to be a popular option for PLHIV. The idea of one pill once a day is attractive, plus you only have to pay one copayment at the pharmacy. There are other all-in-one pills on the horizon, too. The long-awaited QUAD pill will likely be available in Australia next January. QUAD contains an integrase inhibitor, elvitegravir, plus tenofovir, emtricitabine and a novel boosting agent called cobicistat. The pill is as effective as the widely used Atripla combination but with fewer neuropsychiatric side-effects, researchers reported at the 19th Conference on Retroviruses and
The Connect study is one of its kind in investigating behavioural norms, and it is closing in a couple of months. For the study to be as helpful as possible they require more participants. So, if you’re male, 18 or over, live in Sydney, Melbourne or Perth and have had sex with another man in the last 12 months, go here: nchecrsurveys.unsw.edu.au/ connect/
Opportunistic Infections in Seattle in March. Further on the horizon is a
protease inhibitor-based single combo tablet containing darunavir, emtricitabine, cobicistat plus a new potent version of tenofovir currently dubbed GS 7340. GS 7340 is a ‘prodrug’ of tenofovir. Prodrugs are typically inactive chemical compounds that turn into an active drug when they interact with the body’s metabolic system. GS 7340’s mechanism of action is the same as tenofovir, but it requires a dose that is ten times lower than Viread. QUAD2 is also there in the distance. Identical to QUAD, except it will come with the more potent GS 7340 replacing tenofovir.
Dental scheme continues. . . for now fund a replacement until the 2013-14 budget. That could leave a gap of up to a year in which there may be no Medicare funding for dental services, shunting some people who now qualify for the Chronic Disease Dental Scheme onto the public dental waiting list. It is unclear whether the Greens would help Labor axe the Medicare scheme if there is a lengthy wait for a replacement,
in order to deliver its muchvaunted budget surplus, the gillard government is gambling on clinching parliamentary support to shut down the existing medicare-funded dental scheme. the program has blown out from $377 million to $1.9 billion in four years. Labor will hold talks with the Greens over the next two months to design a new national dental scheme, but does not intend to
Connect and be counted time for the Connect project aims to understand hiv-related behaviours and the riskreduction strategies of different groups in the gay community. Run out of the Kirby Institute in Sydney, this project will inform gay community organisations and HIV prevention programs about how to best target and deliver prevention programs in the future.
PHOTO: ADVENTTR
US regulators still place efavirenz as their preferred option for commencing treatment as people with a high viral load (above 100,000 copies) are more likely to experience virological failure and resistance to treatment on rilpivirine. Adherence is also a big issue with this drug as fewer missed doses may result in developing a resistance not only to it but to the whole family of NNRTIs. Plus you do need to take it with a good, solid meal. But the big bonus is that rilpivirine is more easily tolerated than efavirenz and has fewer central nervous system problems. Multiple-combination pills
PHOTO: YOUNGVET
Say hello to eviplera, the latest, once-a-day, multiplecombination pill. Available on the PBS in Australia since 1 June, Eviplera (called Complera overseas) contains tenofovir and emtricitabine — the two NRTIs also found in Atripla. But instead of efavirenz, Eviplera contains rilpivirine, a new NNRTI which has been shown to be a valid and safe alternative to efavirenz for people who are just starting on treatment as well as for others who need to change regimens. Rilpivirine is also safe for women of child-bearing age to take and it also appears to have a better lipid (fat) profile than efavirenz.
a flu shot
if you haven’t had one this season, it’s time for your influenza vaccine. Anyone living with HIV qualifies for free vaccination under the Immunise Australia Program and you can usually receive the shot from your GP or clinic without filling a prescription.
PositiveLiving l 3 l WINTER 2012
given the minor party ultimately wants universal dental care. But Greens dental spokesman Richard di Natale hailed May’s budget dental boost — which was a condition of Greens support for Labor to form government in 2010. Anyone living with HIV who hasn’t updated their 2012 care plan with their GP is encouraged to do so to take advantage of the scheme while it lasts.
tenofovir safe in pregnancy being exposed to tenofovir before birth appears to have no adverse effects on babies born to hiv positive mothers in Africa, a recent study reports. Most of the women who became pregnant were taking a combo containing tenofovir before and throughout their pregnancies and there was no increase in birth defects, growth abnormalities or kidney problems. Furthermore, none tested for HIV were positive, and
no bone fractures or kidney problems occurred during followup and there was no effect on growth at 2 years. Babies were followed for up to 4 years. Their findings suggest that tenofovir-containing ART is a reasonable choice in pregnancy and that tenofovir pre-exposure prophylaxis (PrEP) is also a reasonable choice for women who are at high risk of seroconverting during pregnancy. PLoS Medicine
THENEWS
experience has shown that health outcomes are better if treatment and care is planned in partnership with your doctor. that’s why we’ve updated our popular Checklist guide for people with HIV. NAPWA produces this guide to help positive Australians make the best decisions about their health, care and treatment, and this edition includes the latest information on treating HIV. It gives you a checklist of issues to work through when seeing a doctor for the first time or when you are preparing or updating your health care plan (something that all people with HIV should have done annually, at least). The guide lists the main tests and health checks that positive people should expect to receive as part of their comprehensive health care; as well as links to support and information services. The checklist is designed for all people with HIV. However, there are some additional issues listed for people who have recently seroconverted or for those with more advanced HIV disease. n The guide is available to download or print at http:// napwa.org.au/resource/a-check list-guide-for-people-with-hiv
help take first step to eradicating hiv Are you hiv positive? live in melbourne? Aged between 18 and 60? had an undetectable viral load for at least three years? had a Cd4 count above 500 for at least six months? And on Arv treatment? We need you for a new trial into an agent that may be the first step towards eradicating HIV from the body. The drug is called Vorinostat and the study involves taking it for 14 days. Talk to Michelle Boglis or any member of the Clinical Research Team at The Alfred. Call 03 9076 6908 or email: clinresearch@alfred.org.au
CAld more likely to be diagnosed late A survey conducted by the national Centre in hiv Social research has found that people from culturally and linguistically diverse backgrounds (CAld) are more likely to be diagnosed with advanced hiv disease in Australia — although late diagnosis was also a problem among study participants from Anglo-Australian backgrounds. What is most troubling perhaps is that for a vast majority of CALD participants in the study, their HIV diagnosis was their first ever HIV test. Many
participants did not expect a positive result, even those who had experienced HIV-related symptoms and were quite unwell. ‘This is worrying,’ says lead author Dr Augustine Asante, ‘as it shows the level at which people are testing and illustrates how low many CALD people perceive their risk of contracting HIV to be.’ He expected that HIV-related stigma would be an issue for this target group but was surprised by how high it was in these communities. One of the recommendations
Drink coffee, don’t die
of the study is to run regular surveillance activities within CALD communities similar to those that are run in the gay community. Dr Asante also encourages doctors who work with CALD communities where HIV diagnoses are highest to be more proactive in offering regular HIV testing to their patients. ‘CALD communities would accept that if this is a problem and someone is doing something about it then it is for the good of the community,’ he said.
Hints for a happy heart the purpose of taking a fish oil supplement is to give you a good dose of the cholesterollowering omega-3 essential fatty acids: eicosapentaenoic acid (epA) and docosahexaenoic acid (dhA). fish such as mackerel, tuna, salmon and sardines are good sources of both of these as are those small shrimp-like crustaceans called krill. but despite all the hype surrounding krill oil, it appears to be no better than standard fish oil and may in fact impart less benefit.1 This was one of the tips offered at a session on lowering the risks of cardiovascular disease (CVD) for positive people, held in Sydney recently. The session was targeted at treating doctors but much of the content was simply good advice. Professor Andrew Carr, who heads the HIV, Immunology and Infectious Diseases Unit at St Vincent’s Hospital, was one of the experts on the panel. ‘Everyone should have their CVD risk assessed,’ he advised. ‘Remember, it is the overall CVD risk not just total cholesterol that matters. Those at low risk probably require no interventions at all, while those at higher risk may first need to look at modifying certain
lifestyle factors.’ Doctors at the meeting suggested the obvious: lose weight if you’re overweight, eat well, exercise more and, of course, stop smoking. Smoking is one of the biggest modifiable risk factors for CVD. Combine this with some other non-modifiable risk factors like a family history of CVD, being male and being older; and then throw HIV into the mix and your risk of CVD is getting up there. ‘There are no good data telling us whether it is better to lower cholesterol by using drugs like statins, or by changing your ARV regimen to one that doesn’t include a protease inhibitor (PI) or abacavir,’ Prof. Carr advises. ‘For many people, competing health risks such as neurocognitive impairment, HIV drug resistance or renal disease might make a PI and abacavir-based combination the best choice overall despite any CVD risk they bring.’ If you are looking at reducing your LDL levels by taking a statin medication, Crestor and Lipitor are probably the most potent and effective, however an older drug,
PositiveLiving l 4 l WINTER 2012
Pravastatin, may still be effective and has fewer side effects. If you’re interested in learning more, the Heart Foundation has developed a new consumer resource for PLHIV about our risk factors for heart disease. Cardiovascular wellness for people living with HIV is available in print and as an interactive online resource with links to further information. The brochure contains information on smoking, nutrition, salt, physical activity, healthy weight, blood pressure, cholesterol, alcohol, and social and emotional wellbeing. Plus there’s a section on treatments and another on recreational drug use. n The resource will be officially launched on 9 July. More information at heartfoundation.org.au/hiv 1 Ulven, Stine M. et al Metabolic Effects of Krill Oil are Essentially Similar to Those of Fish Oil but at Lower Dose of EPA and DHA, in Healthy Volunteers Lipids (2011) 46:37–46
IMAGE: KALISTRATOVA
Making the best choices
uS researchers have discovered an association between drinking coffee and living longer. It’s a strange association because they found that coffee drinkers also tended to be cigarette smokers, meat eaters, consumers of larger-than-average amounts of alcohol and were less likely to engage in vigorous exercise. But it was a large, prospective cohort study — over 500,000 men and women aged between 51 and 70 years of age followed for 14 years—and after adjusting for potential confounders (smoking status in particular), they found that compared to men who drink no coffee, those who drank 6 or more cups per day had a 10% lower risk of death, whereas women in the same category had a 15% lower risk. Coffee consumption was significantly linked to less chance of dying from heart disease, stroke, respiratory disease, diabetes, infections, injuries and accidents. Cancer was the only cause of death not positively affected. ‘Given the observational nature of our study, it is not possible to conclude that the inverse relationship between coffee consumption and mortality reflects cause and effect. However, we can speculate about plausible mechanisms, by which coffee consumption might have health benefits,’ they say. ‘Coffee contains more than 1000 compounds that might affect the risk of death. The most well-studied compound is caffeine, although similar associations for caffeinated and decaffeinated coffee in the current study and a previous one suggest that, if the relationship between coffee consumption and mortality were causal, other compounds in coffee (e.g., antioxidants, including polyphenols) might be important.’ So they are unable to assess whether this association is due to the coffee itself or something else, but they confidently claim that: ‘our results provide reassurance with respect to the concern that coffee drinking might adversely affect health.’ In other words: have a cup. NATAP.org
w
Services at the Albion Street Centre in an interview on NAPWA’s campaign for ABC Radio National. ‘So,’ he continued, ‘the more people who actually end up on treatment, the less new infections that there should be.’ At the launch of NAPWA’s treatment campaign, infectious diseases physician at The Alfred, Dr Edwina Wright, summarised it like this: ‘If someone does not fit the current prescribing criteria because their CD4 cells are greater than 500, but they are convinced by what current science is saying and/or they wish to reduce the risk of transmitting HIV to their partner then I think it is perfectly reasonable for us as HIV clinicians to endeavour to commence them on treatment.’ So, while the time to commence ARV therapy is influenced by guidelines and governed by prescribing criteria, the ultimate decision, like many things in medicine, is very dependent on each individual situation.
hy is nApwA asking you to start a treatment conversation with your doctor? Surely everyone with hiv talks to their doctor? Well, yes, most of us do. But some of us don’t. Some people find out they are positive and simply don’t go back to the doctor. In clinical speak they get ‘lost to follow-up’ and often don’t resurface until their CD4 count hits rock bottom, something goes horribly wrong and they end up in hospital. Others decide to put off treatment for as long as possible. They may have had a bad experience in the past or heard that all treatments still have hideous side effects and require multiple pills taken numerous times a day. Some people have been on the same combination and putting up with the same niggling little side effects for years. Their blood results are fine and they see their doctor regularly but they don’t like to make a fuss. We think it’s particularly important for these people to engage more with their doctor, to update their knowledge and gain the benefits of modern HIV treatment. For those who may not have been positive for long and who have stable CD4 counts over 500, the decision about whether to start treatment is a little more controversial.
time to deCide A recent study conducted by the Australian Research Centre in Sex, Health and Society, the Tracking Changes Study, documents some of the fears and concerns that some of us have about commencing treatment. The report includes quotes from interviews with people living with HIV, like this one:
when to StArt There is a body of expert opinion favouring earlier initiation of HIV treatment. The view is that earlier treatment may prevent the damage associated with HIV replication during early stages of infection and may also reduce the risk of developing complications later in life. In March this year, the US DHHS Antiretroviral Guidelines were updated to recommend antiretroviral therapy (ART) for all people with HIV. The strength of this recommendation varies on the basis of pre-treatment CD4 cell count—so, those with counts below 350 cells receive a rating of ‘AI’ (strongly recommended based on data from randomised controlled trials); those whose counts fall between 350 and 500, one of ‘AII’ (strongly recommended based on data from well-designed nonrandomised trials or observational cohort studies with longterm clinical outcomes) ; and anyone who has over 500 CD4 cells gets a ‘BIII’ (a moderate recommendation based on expert opinion). In Australia, a panel of experts meets each time the US guidelines are updated to provide commentary on their application in this country. The most recent Australian Commentary, released in May, reported that a majority of the panel does not support commencing treatment for everyone with over 500 CD4 cells unless there are significant reasons for doing so. This corresponds with the current prescribing criteria set out under section 100 of the Highly Specialised Drug Program. The Commentary did support the US position that the decision to initiate ART
When to treat Adrian ogier contributes to the ongoing conversation about treatment initiation
should always include consideration of other conditions and the willingness and readiness of the patient to start. As there is no randomised trial data to support treating above 500, it remains, as the US guidelines stipulate: an ‘expert opinion’. The START trial may provide some more concrete answers but these will not be available for a couple of years at least.
treAting to prevent Treatment as prevention is the other consideration for starting treatment. Since 2004, San Francisco has been engaged in a ‘test and treat’ revolution where everyone who tests positive for HIV is linked to care and offered treatment. And from a public health point of view, it seems to be working, with a decline in community viral load linked directly to a reduction in new infections to the end of 2009 of around 40%. The Australian Commentary agreed with the guidelines that a secondary goal of
ART is to reduce an HIV positive person’s risk of transmitting the virus and that the public health benefit of being on treatment is significant. However, it maintains that the decision of when to start ART should be based primarily on the benefit of treatment to the person with HIV. A majority of the panel wanted it noted that the results from the HPTN052 trial that showed a 96% reduction in transmission amongst serodiscordant heterosexual couples is not directly transferable to our situation in Australia where 86% of newly acquired HIV infection occurs among men who have sex with men. That said, many clinicians in Australia today would support someone in a serodiscordant relationship (gay or straight) who wanted to commence treatment. ‘When someone goes on treatment it makes them much less infectious, perhaps 1,000 times less infectious than they would be if they weren't on treatment,’ said Ass/Prof Don Smith, head of Clinical
PositiveLiving l 5 l WINTER 2012
“the barrier to commence my hiv treatment was the hardest thing to work through personally. it took my doctor three years to convince me it was the right thing to do. in hindsight having now been on meds for over a year and my health at its best i wish i could have known and started them earlier . . .” This experience is not an unusual. Some of us require considerable time to adjust to the idea of starting treatment. The concern is that many of us may be waiting too long. Recent data from the Kirby Institute reveals that many PLHIV have been starting treatment when their CD4 counts have dropped well below the lower recommended level of 350. According to the Australian HIV Observational Database, the median count for people starting treatment since 2006 is just 294. In 2010, the median CD4 count of those newly diagnosed with HIV was 399 CD4 cells, which suggests that people are losing around 100 CD4 cells between the time they are diagnosed and when they start on treatment. If it takes us time to adjust to the idea of going on treatment then perhaps we should give ourselves that time and start planning earlier. Doctors may also need to start discussing treatment options sooner after diagnosis. While the decision of whether and when to treat ultimately falls on each of us as individuals; both decisions can be made a lot easier by starting and having ongoing treatment conversations with our doctors . . . and each other.
Prevention PHOTO: STOCKSNAPPER
gets topical
O
nly two years ago, we had scant evidence that a product used before sex could prevent hiv. Since then, the CApriSA 004 trial has proved that a gel applied topically to the vagina can reduce the chance of hiv infection, and several trials have shown that a tablet taken orally can do the same. next on the agenda are rectal microbicide gels and multiprevention technologies designed to prevent pregnancy as well as hiv. but where does this new technology leave those of us who already have hiv? Adrian ogier and Jane Costello report from the international microbicides Conference held in Sydney in April.
‘We can finally talk about the end of the epidemic,’ announced Mitchell Warren from the Global Advocacy for HIV Prevention (AVAC) at a community forum before the conference. ‘But there are gaps that must be addressed,’ he said, referring in part to the delay between when a phase III trial ends and the product finally gets into the community. ‘We need to demand biomedical prevention with as much passion as we demanded treatments in the 80s and 90s. We must push for ARV prevention in the arenas where treatment is not reaching all who need it.’ African countries were particularly well represented at the conference—not surprising,
considering the potential boon for the continent when these interventions are finally rolled out. ‘We have to start thinking about access now, while research is going on,’ said Milly Katana, a public health specialist from Uganda. ‘Then we will be prepared to ensure women have access to safe and effective microbicides as soon as they are introduced.’ vAginAl miCrobiCideS In 2010, the CAPRISA 004 trial in South Africa found that 1% tenofovir gel reduced the risk of HIV infection via vaginal sex by 39% overall. Women were counselled to use the gel within 12 hours before and after sex. Since then, the VOICE trial, which was designed to test both
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oral and topical ARV-based prevention, found that the gel did not reduce risk in women counselled to use it on a daily basis. The gel arm of the trial was halted after they found equivalent rates of HIV infection in the active and placebo gel recipients. Despite the complex challenges, it is clear that microbicides signal the way forward as an HIV prevention option; particularly for women who do not have the social or economic power to negotiate safe sex or the ability to extricate themselves from situations that may place them at risk. And it seems the appeal of the vaginal microbicide gel lies in its lubricating properties as much as it does in its potential to protect.
This was illustrated most strongly in a symposium on pleasure and biomedical prevention when Jonathan Stadler, a researcher from South Africa, told us how women utilised the gel in their sex lives. ‘It makes you feel like having sex,’ said one. ‘It makes your partner want you,’ said another. ‘We have been led to believe that for African women sex is a commercial act, a forced act or one to tolerate,’ said a fellow researcher, Mitzy Gafos, in the same session. ‘This is definitely not the case for the women of KwaZulu-Natal (one of the provinces in South Africa where the trial was rolled out). ‘Love is a verb in this environment. Women here work
at love and work to maintain it. Condoms are seen as unclean and are associated with lessened pleasure and interrupting the sex act.’ So despite disappointing results and the gel not yet being available outside of trials, women liked the stuff and by all accounts wanted to keep on using it. There is now a proposed openlabel study (where all participants are offered the product being tested and there is no placebo) of 1% tenofovir gel, called CAPRISA 008. This study would look at effective ways to deliver the gel in communities where the CAPRISA 004 trial took place. reCtAl miCrobiCideS Researchers in the US have reformulated a gel with less glycerin to make it more agreeable for rectal use. So far it has proved effective against HIV in laboratory tests of human rectal tissue and its safety has been tested by 65 HIV negative men and women who used it rectally once a day for a week. Because the risk of acquiring HIV through unprotected anal sex is so much higher, this represents an important step towards developing a safe and effective rectal microbicide. MTN 017 will be the first ever Phase II trial of a rectal formulation of 1% tenofovir. Scheduled to begin this year, over 200 gay and other MSM will be enrolled at sites in Peru, South Africa, Thailand and the US. ‘For far too long the operating principle concerning the HIV epidemic in Africa has been that it is solely heterosexual, and that sexual transmission is entirely driven by unprotected vaginal intercourse between men and women,’ said Jim Pickett, chair of the International Rectal Microbicides Alliance (IRMA). ‘But an increasing body of evidence tells us quite clearly that unprotected anal intercourse is happening all across the continent — amongst heterosexuals as well as gay men, MSM and transgender individuals. ‘Unprotected anal intercourse is not uncommon in Africa,’ he continued, ‘and compared to unprotected vaginal intercourse is 10 to 20 times more likely to result in HIV infection.’ Researchers at the University of Pittsburgh have also developed a rectal microbicide gel that contains two different antiretroviral drugs: tenofovir and griffithsin.
Griffithsin is a protein isolated from red algae, called griffithsia, and in the laboratory has been shown to be a highly potent HIV entry inhibitor and a particularly good candidate for a microbicide. multi-prevention teChnologieS Many candidate microbicides currently being tested are widely anti-microbial and may provide protection against a range of sexually transmitted infections, including HIV. By neutralising pathogens in both semen and vaginal secretions, these products may provide bi-directional protection; that is, will help protect both parties. This will give HIV positive people a way of reducing their negative partner’s risk of HIV exposure during sex — as well as a way of reducing their own risk of contracting infections. Dual-purpose technologies, also known as multi-prevention technologies are moving to the forefront. Dr Henry Gabelnick, Executive Director of CONRAD, spoke about the need for products that prevent pregnancy as well as HIV infection. ‘Improved prevention technology should be developed more vigorously but it is severely dependent on funders recognising that not only HIV prevention but broad spectrum microbicidal activity as well as contraception are necessary.’ prep for men A range of pre exposure prophylaxis (PrEP) trials in different populations have shown effectiveness from none, to moderate (39%-42%) to high (75%) with the degree of success linked closely to adherence. Dr Kenneth H. Mayer of the Fenway Institute in Boston and Dean Murphy of the National Centre in HIV Social Research at the UNSW led a symposium ‘What is needed to make PrEP an effective prevention technology for gay men and other MSM?’ The session looked at lessons learned from PrEP clinical trials to date and how PrEP might be rolled out for gay men and other MSM. ‘The iPrEx study provided clues that point to what we need to do to move PrEP from clinical trials to real world use,’ said Dr Mayer. ‘Our challenge now is to translate what we’ve learned into effective programs that will make PrEP available to gay men who need it in the US, Australia and around the world. There is much
work to be done to ensure that gay men and their healthcare providers understand both the promises and the limitations,’ he added. prep for women Evidence suggests that oral tenofovir or tenofovir/FTC (Truvada) is also an effective prevention strategy for women, although it was reported at the conference that tenofovir may be more fragile in women than men. Adherence is the key to the success of PrEP, as is evident by the FEM-PrEP study, stopped in April 2011 because almost as many HIV infections occurred in women given Truvada as in those given placebo. One presentation looked at the biology of HIV transmission and the implications for the design of effective PrEP. It reported that women on PrEP could experience mucosal inflammation, and that having unprotected sex changes the mucosal environment and the effectiveness of the drug regime. As mucosal inflammation increases the risk of HIV transmission, it was suggested that there is a need for more potent drugs or drugs that don’t require intercellular metabolism. poSitive women And prevention ARV-based microbicides are not always suitable for women living with HIV due to possible drug interactions and resistance; however, all but one of the microbicides in current clinical trials is ARV-based. This was one of the issues raised at a controversial symposium on women’s advocacy entitled ‘HIV prevention needs of women living with HIV’. Anna Forbes of the Positive Women’s Network in Oakland, California examined the new HIV prevention technologies and their relevance for positive women. She highlighted the possible interaction and resistance issues and called for more research into non-ARV based microbicides to benefit those living with HIV as well as those who do not know their status. She also questioned the effectiveness of PrEP, citing two trials which did not show the same levels of protection for women as they did for men. Ms Forbes also expressed concerns about treatment as prevention, particularly regarding adherence, potential resistance, equality in access and the protection of human rights.
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‘Given the way HIV mutates and changes,’ she said, ‘HIV vaccines are very difficult to develop because HIV mutates rapidly as it reproduces.’ ‘However, we should be encouraged by the proof of concept around research thus far.’ Finally, Ms Forbes noted that the female condom, while not a new HIV prevention strategy, still faces major barriers due to high cost and a lack of awareness and availability. femAle Condom Jane Bruning, the coordinator of Positive Women in New Zealand, noted that the female condom comprises only 1% of the total uptake of condoms worldwide. ‘This is mainly because they are so expensive compared to other forms of barrier protection,’ she said. Ms Bruning tabled the most recent advances including models made of nitrile rubber, a synthetic product as effective as polyurethane or latex, but less costly and able to be used with both oil and water-based lubricants. Although women have expressed their reservations, Ms Bruning stressed their benefits. ‘The female condom enables women to gain control of their own sexual health,’ she said. ‘As well as reducing the risk of transmitting HIV, they protect the positive woman from other STIs as well as other strains of HIV. Importantly, they allow her to share the responsibility for safe sex, particularly when the male partner refuses to wear a condom. And unlike the male condom, they can be inserted in advance.’ Jane believes that women living with HIV, together with governments and other major donors, can do much to advance their accessibility and affordability. reproduCtive heAlth Susan Paxton, an advisor to Women of the Asia Pacific Network of People Living with HIV (APN+), presented some peer-led research from the region. In an impassioned presentation, Ms Paxton revealed that only 9% of women who participated in the study (and whose HIV test was not voluntary) had received post-test counselling. She professed that a
significant amount of misinformation had also been provided to these women, with most being discouraged from becoming pregnant by health care workers. Twenty-two percent of women in the study had had abortions, but 29% of those who had aborted had in fact wanted the pregnancy. Furthermore, 30% of women were encouraged to consider sterilisation, usually by gynaecologists (42%) or HIV clinicians (20%), and there was a positive correlation between women who had a caesarean and women who were recommended to be sterilised with some not knowing whether they had been sterilised during the procedure. Ms Paxton highlighted the need for contraceptive methods that women can control such as IUDs, pills, injectables and female condoms. Cost was clearly a major barrier for accessing health care for most of the women interviewed, and cases of discrimination were rife amongst the study’s participants. Only 7% of women had initiated ART at a CD4 count of greater than 350 cells; with the majority not starting until their count was less than 200 cells. The research provided a number of key recommendations, including the need to invest in positive women’s organisations; expand counselling services; improve the sensitivity of maternal health services; ensure the provision of social security; and uphold positive women’s rights. Read the full report at: gnpplus. net/en/regions/asia-pacific n The symposium concluded with a call to mobilise positive women’s voices in advocacy so that they are able to realise their full sexual and reproductive health and rights. n Jane Costello is a member of NAPWA’s National Network of Women Living With HIV. n This Microbicides Conference was the seventh and last of its kind to be held. At the final plenary, representatives for joint funders, the National Institutes of Health and the Bill and Melinda Gates Foundation, announced that future biennial conferences would now integrate the spectrum of prevention technologies including vaccines, microbicides and oral PrEP.
david menadue tackles two of the biggies in the bedroom: unprotected sex and lost libido.
sexual
DiLEMMAS FAR LEFT PHOTO: OSTILL, LEFT PHOTO: LSO
Whenever you talk sex with other positive people there always seems to be an elephant in the room. And I’m not talking about jumbo appendages or huge sexual appetites, either. The elephant, of course, is unprotected sex. It is not surprising that some people with HIV have started to weigh up the risks if they were to have unprotected sex. Reported just last year, the HPTN 052 trial conducted with serodiscordant couples, showed a 96% reduction in transmission rates if the positive partner was on treatment and had an undetectable viral load. It is also not surprising that many positive people are not willing to discuss the issue. We are understandably concerned about any risk of passing HIV onto our partners. We are wary of the possibility of criminal sanctions or public health management if we were to admit to having unsafe sex, particularly if disclosure hadn’t occurred. We are also acutely aware of the potential community backlash. One woman I spoke to for this article told me that her positive female peers are talking about it amongst themselves and with their partners. ‘We know there are still risks,’ she said. ‘We are only discussing it for people who have had an undetectable viral load for at least six months and are in regular monogamous relationships. ‘HPTN 052 made it clear that if you pick up an STI for instance, your viral load goes up. For quick meets online, I can’t imagine any positive woman not asking for condoms to be used.’ Gay male serodiscordant couples are also talking but can’t be certain about the relative risks as there are no comparable trial results. It will be some time before those that are underway will be reported, including an Australian one just started. ‘There is no doubt that unprotected sex increases feelings of intimacy and adds to the spontaneity of sex,’ said an HIV negative gay man who has been in a relationship with a positive guy for the past five years.
PHOTO: B_PARKER
unproteCted Sex
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‘There is a lot of pressure maintaining condom use in a relationship for every sex act. Most of the time we are disciplined but sometimes it just happens,’ he said. People would be well advised to take into account a recent study of HIV positive gay men from Boston USA that showed that a quarter of the men with an undetectable viral load still had detectable virus in their semen. Although the seminal viral load was low, the researchers think it was still enough to be one of the explanations for ongoing transmissions in gay men, despite a high proportion being on antiretroviral therapy. The researchers noted that 24 of the 101 gay men in the study had undiagnosed urethral inflammation which is the likely cause of a higher seminal load in some of these men. While some of this urethral inflammation was due to the presence of an STI, others weren’t and the researchers postulate that some inflammation may be due to them being the insertive partner during unprotected anal sex. The report states that ‘this raises the possibility that seminal HIV in subjects engaging in UIAS (unprotected insertive anal sex) with HIV-infected partners may be attributable to urethral superinfection or contamination with HIV from rectal secretions of sex partners. ‘Reports of high numbers of HIV-target cells in the urethra and HIV infected cells in urethral secretions from HIV-seropositive men with and without urethritis indicate that the urethra may be a primary HIV infection site. Furthermore, higher concentrations of HIV RNA have been reported in rectal mucosa secretions than in blood and seminal plasma among MSM, and may be independent of ART.’ Many positive people opt for relationships with other positive people to avoid the stresses of passing on the virus to a partner. But even then, there is some dispute over whether pos-pos unprotected sex can cause reinfection or pass on resistant strains of the virus. Researchers are confident that re-infection with another strain (we largely have the subtype B of HIV in Australia) is unlikely if people have an undetectable viral load.
Treatment resistance can develop if people miss doses of their antiretrovirals or take short breaks from treatments. This treatment resistance can be passed on to a negative or positive partner and this could affect their responses to certain treatments down the track. Researchers are not clear how often it happens though. They think it is less likely if people maintain an undetectable viral load and more likely to occur in the first three years of being HIV positive or if an STI like syphilis or herpes is present.
loSt libido And SexuAl funCtion Another sexual dilemma that plagues many positive people is the loss of libido and sexual function. Some of this can be attributed to ageing but the high level suggests there may be a link with HIV and its treatments as well. A Spanish review of research studies in this area, published in AIDS 2007 by Dr Jules Collazos, found the average prevalence of sexual dysfunction in HIV positive people was 51%, which is substantially higher than the general population. Collazos examined the potential link with treatments and these problems and found some researchers suggested there may be an association with protease inhibitors, particularly ritonavir and indinavir. However, other researchers could see no association and cautioned against people trying to change their regimens as they may be essential to maintaining general health. There also seemed to be some evidence that people have improved sexual function when taking NNRTIs, including nevirapine. Richardson and colleagues from St Mary’s Hospital in London found that sexual dysfunction was often related to anxiety and depression, which are both substantially higher in HIV positive people. They also attributed it to the use of antidepressants and recreational drugs, in particular methamphetamine. Undoubtedly changes in body shape for those who have experienced lipodystrophy from antiretrovirals used in previous years have affected people’s
sexual confidence. A GP I spoke to about this issue said that about 30% of sexual problems probably had a physical cause. Erectile difficulties may be caused by circulation problems. Getting risk factors for cardiovascular disease under control can help these people, with the greatest benefit from regular exercise and giving up smoking. A drop in testosterone levels can be caused by adrenal problems related to HIV as well as ageing. Testosterone replacement certainly works for some men, although the GP warns that there are lots of people with high testosterone levels who still have no libido and vice versa. Limited studies on the role of testosterone replacement in women suggest it may also help their sexual function. Women with HIV who experience early menopause can be given hormone replacement but need to be monitored closely for signs of masculinisation. Early menopause is not necessarily associated with a loss of libido however, and women will often continue to have an interest in sex while experiencing it. For men with erectile difficulties, there are the options of Viagra, Levitra and Cialis. These are all metabolised by the cytochrome p450 enzyme system and interact with many antiretroviral agents including protease inhibitors. They are often prescribed at lower doses by doctors to avoid potential interactions. These drugs should not be used with amyl nitrate due to the possibility of a drop in blood pressure. Other options include the use of penile injections like Caverject. (See James’ story) The GP also stressed the importance of PLHIV raising any sexual concerns with their doctor; although he admitted that some doctors handle the sensitivities involved better than others. ‘I would also say that people need to change the way they think about sex as they get older. It may not be as vigorous or lead to the greatest climaxes ever, but if there is openness and emotional attachment with a partner this can lead to continued enjoyable sexual relationships.’
n Thanks to Jennifer Stewart from the HIV Hepatitis and STI Education and Resource Centre, Alfred Hospital for help with this article. n Footnotes for this article are viewable on the online version at napwa.org.au/pl
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three deanna, 46, partnered heterosexual woman Deanna has had HIV for 16 years. In that time, she has experienced several AIDS-defining illnesses but is now in robust health, regularly participating in endurance sports and long bicycle trips. ‘I’m a great believer in fitness and eating highly nutritious foods to help not only with management of your HIV but also to increase your interest in a healthy sex life. There is no doubt it helps with body image, energy and self-esteem, particularly for those of us who have had to cope with lipodystrophy in the past’, she says. Deanna experienced early menopause with the onset of heavier periods, night sweats and hot flushes occurring in her midthirties. This, she says, is not uncommon amongst her positive women peers, particularly those who have lived with HIV for a long time. She is not prepared to take hormone replacement for it and relies on her fitness and lifestyle to get her through. Deanna says that most of the positive women she mixes with have partners, most of whom are HIV negative. ‘The male partners seem to cope quite well with it and look to the person, not the virus, as the relationship gets stronger.’ ben, 35, single gay man ‘When I found out I was positive several years ago, I wasn’t sure how to treat my sex life. Should I look for another HIV positive partner? I was too scared to reveal my status to HIV negative people online and before long, a positive friend got me onto a bareback site. ‘He told me it was the best place to meet other pos guys and they were there in abundance! But it started a difficult period in my life. I got invited to sex parties and consumed heaps of recreational drugs and had a lot of sex. ‘This led to me getting several STIs and an awful attack of shigella which really knocked me about. ‘Apart from the problem with
stories
STIs, I go through a lot of guilt if I’ve had unprotected sex in those venues without disclosing. It’s so hard to do and you kind of think that the other person is giving you permission to go ahead. ‘I am undetectable and I know there is this talk about that making you un-infectious but the risks make the sex unenjoyable for me. I usually use condoms. What I need is a positive partner so I don’t have to deal with all these issues.’ James, 58, single gay man James has lived with HIV for more than 25 years and has had multiple illnesses along the way with the most recent being a diagnosis of diabetes. ‘I know that having HIV for such a long time, and now diabetes, is taking a toll on my body and inevitably it’s going to affect my sex life. I can’t deny I’m getting older either and other negative friends my age have erectile problems just like me. ‘For whatever reason (I blame HIV but probably unfairly), I have not found a partner to settle down with. That means I look for sexual partners online or at sex on premises venues. There’s no use beating around the bush around this – gay guys at those places are only interested in someone who can get an erection on demand! ‘I’ve tried Cialis when my doctor suggested it was the safest of those drugs to take with ritonavir, although I only take half a normal dose. After a while, it stopped working and I was thinking I’d have to adjust to the idea of being impotent and celibate. ‘A friend referred me to a men’s health clinic where the doctor recommended I try penile injections. The thought worried me at first. But after I saw the small needle and the instant reaction when the nurse tried it on me, I was hooked! It has its problems, including difficulties ejaculating and the erection doesn’t go down after orgasm. But it shows me that people shouldn’t necessarily give up, if they still have an interest in sex but things aren’t working down there.’
dr louise replies: This is a big issue, particularly at the moment, so thank you for your letter. The debate about early treatment has been around for a long time and the pros and cons are still the focus of many discussions. Your readiness to start antiretroviral therapy (ART) is a very important part of any discussion. You are the one with this disease and ultimately it falls on you to decide how and when you will treat it. Our job is to give you all the information on which to base those decisions. You have obviously kept up with the science and probably heard that US guidelines have been recently updated to recommend treatment for everyone with HIV, regardless of CD4 count. This is not yet the case in Australia. Currently, our guidelines recommend and our PBS criteria specify that we commence therapy when someone’s CD4 count reaches or falls below 500. There are exceptions to this rule, such as having any HIV symptoms, being older or pregnant. Initiating ART is usually a process of discussion between medical staff and you — with information about the potential benefits and risks of therapy
dimitri daskalakis works at the positive living Centre in melbourne, which is where he met bashir, a 40-year-old man who had recently immigrated to Australia. A few months prior to them meeting, Bashir had been struck down by a series of unusual allergy attacks that manifested as bleeding lesions, swelling and a severe rash. He visited a hospital in the midst of the attacks and was diagnosed with HIV. ‘I was so angry with myself,’ he told Dimitri. ‘I am an educated man but I did not take the necessary precautions.’ After his HIV diagnosis, Bashir’s rash and swelling persisted. He was prescribed a powerful steroid, which reduced PHOTO: GLOBALP
doCtor louiSe AnSwerS your queStionS
what’syourproblem?
ready to start treatment being discussed, information given and then a few consultations to get the actual prescription right. We encourage our patients to think about the implications of commencing therapy and try and ensure that things are in place to maximise adherence and minimise the chance of any side-effects. Occasionally there is limited time for decision-making (for example when someone presents late with an opportunistic infection and is very unwell) and then we usually want to start the meds very quickly. But what about those of you with ‘robust’ CD4 counts? We know that untreated HIV infection means there is constant replication of the virus and over time this results in a decline of actual CD4 cell numbers and their function. Eventually this can increase the risk of many infections, cancers and inflammatory conditions. It is clear that with people with a CD4 count less than 350 that ART is hugely beneficial, with a dramatic reduction in the progression to AIDS and symptomatic HIV infection. Data also supports the commencement in the range of 350 to 500 CD4 cells with lower rates of progression to AIDS or
death, and more often we are introducing the ARVs to our patients with these cell counts. It is now postulated that commencing therapy at higher CD4 cell counts leads to lower rates of both HIV and non-HIV related illnesses and current studies are trying to evaluate this. START is one such international study and is currently enrolling in Australia. HIV replication, even at high CD4 counts, still causes activation of the immune system and inflammation and this may increase the risk of non-HIV related diseases such as cardiovascular or renal disease and cancers. It may also play a role in the ageing process even at the cellular level, with dysfunction of immune cell function and death of immune cells. Combination ART, like all medications, has the potential for short- and long-term side effects. In general, current regimes are better tolerated and safer than
PHOTO: STEEX
reba from nSw writes: I am a 45-year-old positive woman and I’ve been living with HIV for five years now without any problems. My CD4 count is currently 840 and my viral load is about 10,000. I have been putting off even thinking about going on treatment but now with all the science showing that it’s a good idea (good for my health, protecting my partner, etc) I think I should start.
earlier ones, but all still come with a list of potential side effects. The long-term consequences of daily therapy with some of the newer classes of ART have not been fully evaluated. If treatment commences early, the added years on ART may contribute to cumulative toxicities over time. On the other hand, when we commence the therapy in the setting of AIDS illnesses and opportunistic infections, there are often multiple other medications that can potentially interact with the ART and this can increase the complexity of the drug regimes and risks of side effects and interactions. What about adherence? The best chance of suppressing HIV
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). the symptoms but the moment he stopped taking it, the rash reappeared. This only added to his anxiety. ‘I felt very dirty and contaminated,’ he revealed, ‘like damaged goods.’ Blood tests showed his CD4 count had dropped from 1100 to 800, his viral load had jumped to 40,000 and his CD8 count had risen from 1350 to 1700. Bashir’s immune system was clearly under a huge amount of stress. It was around this time — feeling isolated and in need of
lots of support — he came to see Dimitri, who told him about the services the centre provides and introduced him to Vic Perri at PLWHA Victoria where he took part in a Phoenix workshop and learned all about HIV and its treatment. Dimitri also encouraged Bashir to participate in an eightweek peer support group and it was during the course of the group that he finally decided to start antiretroviral treatment.
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‘It was very empowering to be around others who had been through a similar situation as me,’ he told Dimitri. The rash finally went away. His viral load decreased to undetectable and his CD4 count climbed to1200. He no longer had the ‘reminder’ symptoms that he had been experiencing. Bashir found being on treatment to be calming and reassuring. He also told Dimitri how important it was to be informed and educated about HIV and its treatment.
happens when ART is taken consistently and this then influences clinical outcomes and reduces the risk of drug resistance developing. This is a very personal thing and for some people sticking to a routine of tablettaking is not difficult, especially if the regime chosen is simple and uncomplicated. But for others, depending on their work, psychological factors and the actual regime required, it can be quite difficult to reliably take the medications all the time. Finally, what about reducing the risk of transmitting HIV to sexual partners? Certainly there is evidence that rates of HIV transmission increase in the settings of very high viral load (such as around the time of recent infection) and in the presence of other STIs. Recent studies in heterosexual serodiscordant couples have shown that ART can reduce the risk of sexual transmission considerably. So, risk-reduction is a consideration for starting. But it shouldn’t be your only motivation. Looking after your own health is number one. I congratulate you, Reba, on considering all the factors around the ‘when to start’ question. I encourage you to consider what I’ve talked about and to start the conversation with your doctor. 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.
‘I think striking the balance between physicians, support workers and counsellors has given me great peace of mind,’ he said. ‘I have to confess that I feel very privileged to be in Australia. People are treated with so much care here.’ n Dimitri Daskalakis is Peer Support and Health Promotion Officer at the Positive Living Centre, which is part of the Victorian AIDS Council/Gay Men’s Health Centre. One of his roles is to offer support to HIV positive clients who are often in a vulnerable state after diagnosis, and to link them in with the services VAC/GMHC provides as well as with external services. The Centre is open Tuesday through Friday. Call them on (03) 9863 0444.
stateOFMind welcome to State of Mind, a new column where therapists recommend techniques we can employ to deal with the symptoms of anxiety or depression.
Jon Kabat-Zinn, who created the eight-week Mindfulness Based Stress Reduction (MBSR) program, describes mindfulness as ‘paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally.’ Sound easy? Well, try sitting still for five minutes and concentrate solely on your breath. Think of nothing else. Very soon you realise that your mind has moved away from the breath and has started to plan dinner or to make a list of things to do. One of the biggest misconceptions many people have about mindfulness meditation is that once they start practising it, their minds will suddenly turn off and they will fall into blissful silence. How shocking to discover that we can’t just make our minds stop planning for the future or thinking about the past, while all the time missing what is happening in the moment. It is usually at this point that many people give up and think it’s all too hard or that ‘this meditation stuff is not for me'. Sadly, they are missing the point. Meditation is about learning how to tame our crazy wild horse of a brain. It’s about learning how to ride the horse and how to rein it in. Your mind can be a pretty strange place at the best of times. At worst, it can feel like a prison where you are both the inmate and the jailer. If you have ever experienced an episode of depression or anxiety this description may seem familiar. Constantly marinating in our own thoughts of fear and terror or judgment and self-loathing creates a physiological stress response in the body. We literally want to fight, run away or play dead—but with ourselves. This can get acted out as selfharming behaviours, suicidal thoughts and a numbing down of our senses with substances. Over
sensations and emotions with more clarity which makes it easier to attend to them before you get caught up or lost in them. You also get an opportunity to learn about your body and how we have evolved to deal with stress. Did you know that our minds are like velcro to bad experiences and teflon to good experiences? Our ancient cave-dwelling cousins needed to remember where danger might be lurking. They had a better chance of survival if they retained the negative experience and learned to react quickly. Positive experiences are not going to kill us so there is no need to store them. It’s simply explained. But in today’s world we need to cultivate positive experiences in our daily lives or else things can start to get, well . . . depressing. One very simple way to cultivate a positive experience is to Stop:
In this issue, Curt mason talks about
MINDFULNESS
1 Stop what you are doing 2 take a few deep breaths and really feel your whole body breathing
3 observe your senses one at a time – feel the breeze on your skin, the smell of cut grass, the sound of the sea or anything that is around you
4 proceed with what you were doing
PHOTO: MELODI TP
Mindfulness is a buzz word right now. but what does it actually mean to be mindful?
time, all of these coping strategies become unhealthy and dangerous. Seeking support during these times is vital and one option is mindfulness
meditation. Mindfulness teaches us how to activate our body’s very own stress-release button — our parasympathetic nervous system —
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through breathing and movement. Through meditation you develop stronger concentration. You start to recognise your thoughts,
This is a very simple exercise you can do anywhere and at any time. The few deep breaths immediately activate our natural stress release, which then helps us to move our attention away from stressful thoughts and into the present moment. We are then open to pleasant sensations that give our brains those muchneeded yummy experiences while giving us a rest from stressful thoughts. Curt Mason is a Sydney-based psychotherapist who runs eightweek MBSR programs in his private practice and at ACON. www.therapyspace.com.au
ita launches nApwA’s new treatments campaign Steve moran and brent Clifton (ACon)
Ass/prof don Smith (Albion St Centre), dean murphy (AfAo), dr edwina wright (AShm), and fiona palmer (gilead )
Sean Slavin (nApwA) and limin mao (nChSr)
hen our health minister had to withdraw from launching nApwA’s treatment campaign in may, ita buttrose came to the rescue. the following is an extract from her speech. I’m sorry the Health Minister, Tanya Plibersek, is not able to be with us today. She was supposed to be here and had accepted but as we are all aware, politicians lead unpredictable lives. I would have welcomed the opportunity to discuss with her my concern about the complacency that I feel now permeates Australia’s HIV response. Leadership by the federal government, especially the opportunity to lead on implementation of the new scientific advances in HIV prevention and treatment that the NAPWA campaign picks up on, has been extremely disappointing. I am aware that NAPWA recently asked Minister Plibersek to set up a high level taskforce to cut through the red tape that we know is a real disincentive to people to get tested, seek
counselling and start treatment. I’m talking about such barriers as: n No access to rapid testing in Australia; n Outdated restrictions to prescribing treatment earlier in the course of HIV infection; n Dispensing arrangements whereby people can only have their scripts filled at hospital pharmacies in business hours – it’s hard to believe, isn’t it? n And expensive dispensing fees for HIV treatments that not surprisingly impact on people on lower incomes starting treatment. Australia needs a new national strategy to replace the current strategy, which is weak and out of date. Australia needs a new strategy that reflects the new advances in prevention and treatment. One that sets bold targets for treatment uptake, increased testing rates and significant reductions in new HIV infections.
I urge everyone here to support NAPWA’s ‘Start the conversation today’ campaign. NAPWA hopes this campaign will mark the beginning of work that contributes to a significant shift on the Australian response to HIV, resulting in dramatic falls in new infections and in HIVrelated illness. And it’s hoped the campaign could be part of the beginning of the end of the epidemic; a major step towards an ‘AIDS-free generation’, which was called for by President Obama and Secretary of State Hillary Clinton earlier this year. Now, that’s a goal worthy of everyone’s support and one that I passionately support.
martin holt (nChSr) and dermot ryan (ACon)
guests at the launch
graham foster (tasCAhrd) and tony minge (positive life SA)
bill whittaker and david menadue (nApwA)
ita buttrose with Jane Costello (positive life nSw), tania philips (positive women victoria) and Katherine leane (national network of women living with hiv)
michael frommer and finn o’Keefe (AfAo)
ita buttrose with fellow speakers Simon o’Connor (queensland positive people), robert mitchell (nApwA) and dr edwina wright (AShm)
meggan grose (ACon) with wilo muwadda and Angus binge (positive Aboriginal and torres Strait islander network)
PositiveLiving l 12 l WINTER 2012
Janelle fawkes (Scarlet Alliance) and Stephen hodge (dohA)
Craig Cooper (ntAhC) and lance feeney (positive life nSw)
ALL PHOTOS THIS PAGE BY JOHN MCRAE
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