Positive Living — Summer 2018

positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | SUMMER 2018–2019

TROUBLE ON OUR DOORSTEP positiveliving l 1 l Summer 2018–2019

30 MILESTONES 5 TIPS TO MANAGE OVER 30 YEARS CHRONIC PAIN 10-11

2018 2019

POSITIVE VOICES

WHAT HAPPENED?

WHAT’S NEXT?

GAY, MUSLIM AND POSITIVE

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THE INFLUENCERS

MICHELLE TOBIN

PROMISING TRIALS STEM-CELL SUCCESS INGESTIBLE PILLBOX TREATMENT REVOLUTION CLOSER TO A CURE

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ISSN 1033-1788 edITOr Christopher Kelly

david menadue Vicky Fisher CONTrIBuTOrS Faith Bassett, rebecca Benson, dominic Brookes, richelle douglas, Jake Kendall, Janet Kidd, John rock, miranda Smith deSIGN Stevie Bee design

ASSOCIATe edITOr PrOOFreAder

TRENDING NOW

DULSE 16

DON’T BELIEVE

THE HYPE When it comes to HIV cure research, it can be hard to distinguish genuine, good quality science from spin-doctored, attention seeking.

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The LUNGS

HIV+THE BODY 12

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positiveliving l 2 l Summer 2018–2019

thenews

MHR privacy concerns linger since its launch more than two-and-a-half years ago, the My Health record (MHr) scheme has attracted much scrutiny and criticism from privacy advocates, including leaders within the positive community.

In light of the concerns, the government has introduced two sets of legislative changes.

The first requires law enforcement agencies to seek a court order to access an individual’s health record; while the second ensures that information is permanently deleted if a person cancels their record or once a person dies (rather than it being held for 30 years after their death).

While the proposed changes have been broadly welcomed, some people still have lingering concerns. “Criminals can steal

health information and monetise it in various ways. The reward from illegally trading private health data often renders it more valuable than credit cards,” said cybersecurity expert Steve Hunter. “Australian healthcare organisations need to build trust with consumers, and the only way to do that is to demonstrate strong security measures that will keep individuals’ sensitive information private.”

In response to the privacy controversy, Professor Meredith Makeham of the Australian Digital Health Agency said, “We know through the important national conversation that is currently occurring that Australians expect and deserve stringent safeguards when it comes to their personal information. As the agency responsible for My Health Record, we need to continue to improve the system in consultation with the Australian community and their healthcare providers.”

The opt-out window for the MHR scheme has twice been extended — the new deadline is 31 January 2019. So far, more than one million Australians have decided against joining the database. Those who do not opt out by 31 January will have a digital health record automatically created for them.

unprecedented drop in HiV transmissions rates of HiV in gay and bisexual men in nsW have declined by almost one-third following a statewide trial of prep, according to research released by the Kirby institute.

Described as “globally unprecedented reductions”, the historic downturn in transmissions provides strong evidence to support the largescale, targeted provision of PrEP to help end HIV in Australia.

In the year following the trial — called EPIC-NSW and launched in March 2016 — rates of HIV fell from 149 infections in the 12 months prior, to 102 in the 12 months after. “These numbers are the

lowest on record since HIV surveillance began in 1985,” said the Kirby’s Professor Andrew Grulich, who led the trial. “Our research tells us that these reductions are a result of PrEP, implemented on a background of high and increasing HIV testing and treatment rates.”

The declines were highest among Australian-born gay and bisexual men (48.7 percent) and gay and bisexual men living in Sydney’s ‘gaybourhoods’ (51.8 percent). “These communities had the highest uptake of PrEP, and in these populations, new HIV infections have halved since the trial began,” said Professor Grulich.

However, reductions were not the same across the board.

Declines in transmission were lower in non-English speaking immigrants, with a smaller 21 percent fall among men born in Asia. The data prompted calls to improve education and promote access to PrEP, particularly amongst culturally and linguistically diverse men who have sex with men. “Now that PrEP has been listed on the Pharmaceutical Benefits Scheme, and is available across Australia, we need to focus our attention on ensuring equitable access for all people at risk of HIV,” said Professor Grulich.

Meanwhile, HIV rates in

WA have hit a ten-year low with the drop in new cases largely achieved via a 42 percent decline among gay men.

The WA health department attributed the fall to a number of strategies: access to PrEP, improved testing programs, and high treatment uptake for those with HIV. However, health officials expressed concern about the prevalence of HIV among the heterosexual population where transmission rates have remained steady. "Because of that link with same-sex attraction, people who identify as heterosexual think [HIV] doesn't affect them," said WA AIDS Council chief executive David Kernohan.

syphilis outbreak reaches adelaide a syphilis outbreak has been declared in adelaide, with health officials warning that unborn babies could die if the disease transmits through the womb.

Issuing an alert to medical practitioners, SA Health advised that the state’s syphilis outbreak had extended to Adelaide from the Far North, Eyre Peninsula and western regions. The epidemic originated in regional Queensland in 2011, and has since spread through remote areas of four states of Australia.

“All doctors are advised to offer syphilis testing to Aboriginal and Torres Strait Islander people to assist in controlling the outbreak,” said SA Health communicable

disease control director Louise Flood. “Locating, testing and treating the partners of infectious people is also important in controlling syphilis.”

The alert sent out by SA Health warned that the highly infectious disease could be transmitted from pregnant mothers to their unborn babies. Indeed, last year in regional South Australia an infant was born with congenital syphilis — a potentially fatal condition.

Syphilis also increases the risk of HIV and, if left untreated, can cause long-term damage to internal organs. However, syphilis can usually be easily treated with antibiotics.

In October, health professionals called for the

positiveliving l 3 l Summer 2018–2019

Tammy Franks agrees. “The national strategy should be bringing this under control and clearly the government needs to give more resources as a priority to this,” said Franks. “It’s just unbelievable that in 2018 we’re seeing syphilis diagnosed in a capital city.”

a syphilis awareness campaign poster federal government to urgently fund a sustained and long-term prevention program. SA Greens MLC

Meantime, SA health minister Stephen Wade said the state government would do what it can to try to deal with the outbreak. “We’ll continue to work with Aboriginal and Torres Strait Islander organisations and with other health professionals and organisations to make sure our resources are targeted for the maximum impact on this outbreak.”

thenews

What we learned at ASHm

australasian HiV&aids conference | 28th annual conference of asHM | australasian society for HiV, Viral Hepatitis and sexual Health Medicine | sydney | 24–26 september 2018

G

avin prendergast from acon shared his experience of developing community partnerships to deliver appropriate health messages to culturally and linguistically diverse (cald) groups.

This demonstrated that, done in the right way, we can reach very vulnerable and difficult-to-reach populations. This work takes time, and a lot of ground work must be done to build trust and to find people from these groups who are enablers. Supporting and enabling these people is the essence to

three health professionals report back on key topics discussed at conference.

i

PreP had no increase in STI rates, while those new to PreP had 20 percent more STIs than before.

I found it relevant that of 2,981 Victorian participants, 50 percent had no STIs, with a small group of 13 percent accounting for 53 percent of all STI diagnoses. This was driven by numbers of partners and group-sex participation rather than condom use.

was particularly interested in the presentation of studies from nsW and Victoria looking at the impact of prep on sti trends in high-risk gay and bisexual men.

Both NSW and Victoria found an increased incidence of STIs following the PreP studies. Overall, those who participated in the studies but had previously taken

a

ustralia has seen a “relentless increase” in new HiV diagnoses in aboriginal and torres strait islander (atsi) people, said professor James Ward. this increase lies on a background of a reduction of new HiV diagnoses in non-atsi populations and highlights the ongoing inequity in health outcomes for aboriginal people in australia.

Ward estimated that 14 percent of ATSI people living with HIV are undiagnosed (compared to 8 percent in the general population). ATSI peoples diagnosed with HIV are more likely to be younger at the time of

the health system, lower levels of health literacy, and may be medicare ineligible.

A guiding principle for successful service development is that there should not be services for a group without that group being involved. Health promotion programs and services need to be done in consultation with affected communities — not to or for them — in order to solve leaks from the cascade of care.

success to this work.

In Far North Queensland many CAld community members are from Asia. There is also a trend to bring workers in from South Sea islands with short-term working visas to work on farms in places such as Innisfail.

Others come to the Far North on student visas.

Some are migrants and have worries about using services — especially if they perceive a particular medical finding such as HIV might influence their residency application. They may have less knowledge about negotiating

Faith Bassett Cairns-based clinical nurse

The good news is that with increased frequency of testing, the duration of STI infection is reduced.

And remember, there have been no new HIV infections in this group — which is, of course, the point of PreP. Janet Kidd Sydney-based GP

diagnosis and a quarter of all ATSI peoples with HIV are female. One-third of ATSI people with HIV will be diagnosed late, and there is low HIV testing rates in remote communities — even in the presence of other sexually transmitted infections.

The drivers of this trend are multifactorial and oppression in its various forms — societal exclusion, sexual racism, and exceptionalism — can result in weakened community networks and subsequently lower access to peer knowledge.

Ward suggested we need to explore condom use, rates of unprotected anal intercourse, and

the role of alcohol and drug use in new diagnoses of HIV. We need to address ideas of fluidity of sexuality and gender reclamation in ATSI groups, and work together in reducing stigma and shame of STIs in ATSI communities.

We also need to increase uptake of new treatments and preventatives such as PreP. Targeted campaigns and engagement with multiple population groups, and a holistic and culturally safe model of care, are vital in addressing the epidemic and closing the gap.

Richelle Douglas Perth-based GP

tHe latest nuMbers new HiV diagnoses in australia in 2017

963

lowest number since 2010

Male-to-male sex reported cases

cases classified as late diagnoses

607

274

Heterosexual sex reported cases

238

Highest proportion in a decade

new HiV diagnoses among aboriginal and torres strait islander people

31

up 41% (12% decrease in non-indigenous people)

Figures supplied by the Kirby institute’s annual surveillance report

positiveliving l 4 l Summer 2018–2019

people living with HiV in australia in 2017

27,545 people estimated to be living with undiagnosed HiV

2,899

newsfeature In these digital days, spreading information is easy.

When it comes to HIV cure research, it can be hard to distinguish genuine, goodquality science from spindoctored, attention seeking.

As Miranda Smith reports, the story of Gammora is a cautionary tale. owards the end of october, Zion Medical issued a press release. it described the results of a small phase 1/2a human clinical trial of its peptide-based compound Gammora. the israeli biotech company claimed Gammora eliminated up to 99 percent of HiV within four weeks and had the potential to cure HiVinfected patients.

Treatment for HIV involves the use of antivirals that stop the virus from replicating. But here’s the catch: current antivirals can’t eliminate the virus that goes into hiding and persists indefinitely.

We call this the HIV reservoir and, at the moment, we have no way to reduce this reservoir. It is unclear whether Gammora is acting as an antiviral or is tackling the reservoir — hence the significant confusion in the publicity around the drug.

T

unpacKinG tHe press release The press release does not contain any scientific data.

Instead, it offers statements such as “Most patients showed a significant reduction of the viral load of up to 90 percent from the baseline during the first four weeks.” If we’re looking for an HIV cure, the critical issue is whether there’s a reduction in the HIV reservoir. The press release does not say if the study even looked at the HIV reservoir. Viral load is usually measured in the blood plasma — the liquid part of blood. Regular antiviral therapy should reduce the viral load in plasma.

There were only a small number of study participants, and almost no information provided about them. We don’t

DON’T BELIEVE

THE HYPE A press release scattered with catchphrases is misleading, and definitely not a way to communicate scientific advances. know if the participants were male or female, or how long they had been infected with HIV. We don’t know what previous treatments they had received (or for how long), what their immune status was or how old they were. We don’t know whether the participants were already receiving antiviral therapy. The details of how, and how much, Gammora was administered is also unclear.

In part two of the study, participants received antiviral therapy either with or without Gammora for a short four to five

weeks. This detail in itself is concerning since some study participants were only receiving a single antiviral agent — not the gold standard triple therapy. The press release claims that “combined-treated patients demonstrated sustained viral suppression and achieved HIV-1 RNA <300 copies/mL, and showed up to 99 percent reduction in viral load from baseline within four weeks”.

Let’s unpack this.

Firstly, measuring virus in the plasma doesn’t address the HIV reservoir. Most people with HIV

who start antiviral therapy will end up with undetectable virus in their plasma. The problem for achieving an HIV cure is that in infected individuals on HIV treatment, there is still virus inside cells in blood and tissue. This residual virus is not measured in plasma by routine assays. There are no details on the HIV reservoir in the Gammora press release.

Secondly, the press release makes no mention of what happened in the group that only received the antiviral treatment, so we can’t compare the two groups. Perhaps the antiviral

positiveliving l 5 l Summer 2018–2019

group showed similar results to the group that received Gammora? Also, the study period of about 10 weeks is hardly “sustained” for a chronic infection that can last years.

Finally, the “99 percent reduction” claim for viral load from baseline suggests study participants were not on therapy at the beginning. These sorts of reductions are usual when someone starts therapy for the first time. Also, the trial was not listed in any clinical registry. This means that there are no publicly available details of the study design or recruitment criteria.

WHat about tHe bacK story?

Let’s take a step back and look at the preclinical data the trial was based on.

There is a peer-reviewed article that refers to the early development of what is now Gammora. The early experiments were done in a human cell line called H9 that was infected with wild type HIV. The authors do not list where this virus came from or what clade or subtype it belonged to. They also don’t clearly display their results. This makes it difficult to view the difference between cells exposed to the various experimental conditions.

In short, the paper is vague and lacks many important details.

There is some evidence that the peptide mix (now Gammora) has an impact on the number of infected cells. Even the authors admit, however, that they did not look for latently infected cells.

The authors state that “the novel approach described here for AIDS therapy is only in its initial steps and further attempts to improve the activity of the stimulating peptides are currently conducted in our laboratory”. Published in 2010, we found no further related articles. The published study has been cited four times yet there is no evidence the strategy has been replicated by other research groups.

A peer-reviewed publication of the Gammora clinical trial data will be the best format to review the findings. A press release scattered with catchphrases is misleading, and definitely not a way to communicate scientific advances. So what does all this tell us? Despite, the overly optimistic headlines, Gammora is not a cure for HIV.

WE ARE PROBABLY ENTITLED TO FEEL THAT HIV IN AUSTRALIA IS FINALLY GETTING UNDER CONTROL. BUT HOW DO WE COMPARE TO WHAT IS HAPPENING IN THE ASIAPACIFIC REGION AS A WHOLE? AS JOHN ROCK REPORTS, THE NEWS FROM MANY COUNTRIES IS FAR FROM GOOD.

W

ith a positive population of 5.2 million, the asiapacific is second only to africa in the raw numbers of people living with HiV. in some areas, asiapacific is falling behind africa in its response to the epidemic.

The reduction in new infections in all of Africa since 2010 is 24 percent; in the AsiaPacific it’s 14 percent. And with only 53 percent of people living with HIV (PLHIV) on treatment, the Asia-Pacific has the thirdworst coverage of all regions — beaten only by the Middle East and the former Soviet Union.

The region’s HIV epidemic is mostly occurring in Asia; the Pacific has very small numbers.

Leaving aside PNG for now, Fiji has fewer than 1,000 PLHIV, while most other Pacific islands only report a handful of cases. As for Asia, just three countries — China, India and Indonesia — account for 68 percent of all PLHIV and 72 percent of new diagnoses. Transmission is largely concentrated in the key populations of injecting drug users (IDU), sex workers and clients, among the transgender community, and in men who have sex with men (MSM) — particularly those aged up to 24.

In fact, according to the UN Commission on AIDS in Asia, 50 percent of new infections in the region are expected to be in MSM by 2020. A major factor for the rise in rates is that MSM activity is illegal in most countries of the region, and even where it is not criminalised it is stigmatised to such an extent it might as well be.

This means that it is really hard to access accurate data on the region’s HIV epidemic; few men testing positive are going to admit to anal sex.

That said, looking at the region’s report card, the Asian

TROUBLE ON O

countries that have done very well in regards to their response to HIV are Cambodia, Myanmar, Thailand, Vietnam, and to a certain extent, India and Indonesia. They have all managed to achieve a significant decrease in new infections since 2010. Myanmar, Cambodia and Thailand have developed good policies and there is significant funding available. The funding in FroM leFt of major concern, is the large increase in the number of new infections in young MsM | the ph Cambodia and Myanmar comes from external cambodia is among a handful of countries doing well in the region’s response to HiV | a thai HiV-awaren donors, while Thailand funds most of its own response. transmissions among MSM. quarter of 2018). On the whole treatment coverage in Vietnam For many years, Vietnam The group of middle-ranking though, China has enacted some remains low at 50 percent. While received the majority of its countries are a somewhat mixed good policies, and there exists an authorities treat PLHIV more funding from the United States. bag. Take Malaysia, Japan and increasing sexual openness compassionately than before — But this has been gradually Singapore. Since 2010, Malaysia developing within Chinese especially those who are addicted withdrawn because Vietnam is has seen an increase in rates of society. (Twenty years ago, only to drug use — stigma is still fast becoming a middle-income HIV of 8 percent; treatment 20 percent of Chinese had had widespread and the increasing country. Now relying mainly on coverage is low at 45 percent. sex before marriage, now it is 80 epidemic among gay men internal funding, the Vietnamese Although HIV rates have percent.) There has also been a presents a real challenge. government is hard pressed to remained stable in Japan and huge shift from the early days of China, meanwhile, has seen cover treatment costs, let alone Singapore, no reductions have the epidemic — when the virus an increase in rates of HIV of 14 prevention activities — a trend been achieved. Japan has very few was largely spread through percent in the last year with we’re seeing throughout the Asia- another 100,000 new infections prevention programs in place, contaminated blood — to an Pacific region. As a result, while, in Singapore, citizens are epidemic now mostly driven by (40,000 alone in the second-

positiveliving l 6 l Summer 2018–2019

THE ASIA-PACIFIC RESPONSE HAS AN ANNUAL SHORTFALL OF US$1.2 BILLION.

OUR DOORSTEP people I worked with in the early 2000s have died.

hilippines has the highest HiV growth rate in the asia-pacific ness campaign poster advised to only have sex with their spouses! Nepal has seen a good reduction in new HIV infections but less of a decrease in deaths (a reflection of its poor treatment coverage — 49 percent). Then there are a lot of countries with smaller epidemics such as Bangladesh, Bhutan, Lao, Mongolia, Sri Lanka and TimorLeste — each with their own characteristics.

At the bottom of the region’s response table are Pakistan and

the Philippines. Pakistan has seen a 42 percent increase in new infections since 2010 and treatment uptake is at 8 percent. The Philippines has recorded a shocking 172 percent increase in HIV diagnoses since 2010 and its treatment coverage stands at 36 percent. Frankly, Pakistan and the Philippines have not done much to control their epidemics. There has been low investment and zero policy.

Finally, because of Australia’s

intense involvement in Papua New Guinea, it is worth looking at how that island has fared.

With 48,000 PLHIV, only 55 percent treatment coverage, and new infections on the rise, PNG it is hardly a success story — especially given the millions invested. PNG also seems to suffer constant treatment shortages, and the decrease in deaths is modest — most of the

SO WHY HAS THE ASIAPACIFIC PERFORMED SO BADLY IN COMPARISON TO OTHER REGIONS AROUND THE WORLD? Largely because the overwhelming number of people with HIV (25.7 million) continue to be in Africa, and so the big donor nations (USA and Europe) direct most of the resources there. This is demonstrated by the huge progress made, especially in eastern and southern Africa. the AsiaPacific, in comparison, is sidelined. A consequence of this is an annual shortfall of US$1.2 billion in funding. And as the numbers of PLHIV rise through new infections and lower death rates, access to treatment is coming at an increasingly high cost. Yet statistics show that investment in HIV has flatlined in dollar terms since 2013.

On the list of gaps that need to be urgently filled in the AsiaPacific, treatment is at the top.

positiveliving l 7 l Summer 2018–2019

Only 53 percent coverage is a disgrace. This cannot be improved without first addressing the high levels of stigma and discrimination that exist in some countries — not only around HIV but also toward the key populations that are driving the epidemic. The communities at most risk exist on the fringes of society and are all-too-often ignored. The attitude is one of out of sight, out of mind.

Inaction is bad enough, but some governments are actively worsening the HIV epidemic by oppressing minority groups.

President Mahathir of Malaysia, for example, has reiterated his opposition to repealing the country’s anti-gay laws, and Indonesia has implemented a severe crackdown on gay men — even though homosexuality is not illegal. (This is probably more about President Widodo’s perceived need to beef up his religious credentials ahead of the 2019 election.) All this is having a serious effect on HIV prevention work, let alone care and support, and will certainly exacerbate an already fast-increasing HIV epidemic among MSM in Indonesia.

Because governments are reluctant to engage with key populations at risk, it falls to community to take the lead.

However, to have such structures in place investment is required.

Unfortunately, inadequate as it was, such financial support as used to be provided ten years ago has now almost completely been withdrawn. As a result, many community organisations are operating on a shoestring or have shut down altogether.

And where’s Australia in all of this? Well, we used to be a significant player in the region’s HIV response. But no longer. Yes, we contribute to the Global Fund (one cheque, no responsibility) and make a paltry donation to UNAIDS — but that’s about it.

While we in Australia have HIV largely under control, the response in the Asia-Pacific is in serious trouble and the likelihood of the region meeting the UNAIDS 2020 targets is beyond doubtful, bordering on fanciful.

There are still many barriers which appear insurmountable.

Without a major shift in government policies, and without a considerable increase in funding, the situation in the Asia-Pacific is only going to get much worse. This is happening on our doorstep. Australia could, and should, do more.

2018 HIV

in

CRIMINALISATION, PREP AND PRIVACY FEARS — WITH THE YEAR DRAWING TO A CLOSE, JAKE KENDALL LOOKS BACK ON SOME OF THE BIG STORIES OF 2018.

AFFORDABLE ACCESS One of the biggest advances of the year was undoubtedly the listing of PreP on the Pharmaceutical Benefits Scheme (PBS). receiving the green light in February, the anti-HIV drug became formally available on the PBS as of 1 April.

Announcing the move, federal health minister Greg Hunt described PreP as “one of the most significant advancements in HIV transmission Australia has ever seen”.

The introduction of PreP has seen a rapid shift in sexual practices, with the biomedical tool quickly becoming the preventative method of choice for gay and bisexual men — particularly those in urban pockets of melbourne and Sydney. And while PreP use has been accompanied by a marked decrease in consistent condom use, HIV diagnoses have not increased as a result. rather, PreP uptake has coincided with dramatic lows in the number of new HIV diagnoses in gay men in NSW, Victoria and Western Australia.

(See lead story, page 3.)

Another major side benefit of the uptake of PreP is that — by seeking a new three-month script — gay men are receiving four sexual health screenings a year. Consequently, STIs are being diagnosed earlier and treated quickly. (See page 4.)

SPREADING THE MESSAGE

PRIVACY FEARS

The u=u campaign continued apace in 2018. embraced worldwide, the u=u message — that a positive person on effective treatment with an undetectable viral load cannot sexually transmit the virus — has informed policy decisions and awareness programs in countries including Australia, Canada, China, england, Guatemala, Kuwait, malaysia, Turkey, South Africa, uganda, the uS. Indeed, more than 600 HIV organisations from 75 countries have backed the campaign since its inception bruce richman unpacking u=u in Melbourne earlier two years ago.

The u=u message has been described this year as the biggest advancement in the fight against HIV since the advent of combination therapy 22 years ago. It has been credited for transforming the social, sexual and reproductive lives of people with HIV, and for encouraging more people to test and to seek treatment. Perhaps most importantly, u=u has helped dismantle ingrained stigma still associated with the virus by changing the perception of the reality of what it means to live with HIV in the 21st century.

The my Health record scheme — a centralised, digital database housing sensitive information — raised privacy concerns among the HIV community during the year. While the government was quick to emphasise there would be security settings allowing people to restrict access to specific documents, it was reported these could be overridden by police and government agencies. dejay Toborek of Positive life NSW summed up the concerns of the community: “How can doctors and health services keep confidentiality for people living with HIV, people who inject drugs, sex workers and other vulnerable populations if law enforcement authorities can access the information? The safe, confidential space of a nonjudgemental doctor’s consulting room is now at risk.”

Such was the outcry that, on 31 July, federal health minister Greg Hunt announced changes to legislation so that no health record can be released without a court order. This means that the court will need to be satisfied that sharing the information is “reasonably necessary”. And in late November, new legislation was passed allowing users to opt in or opt out of mHr any time they choose. (See page 3.)

A TRUE WARRIOR

BEHIND BARS On 16 February 2018, trans woman and sex worker CJ Palmer was sentenced to six years in a male prison in Western Australia after being found guilty of grievous bodily harm for the transmission of HIV to a sexual partner. The case further highlighted the negative impact the use of criminal law has on Australia’s HIV response. responding to the verdict, Jules Kim, CeO of the Australian Sex Workers Association, said: “This unfairly reinforces discrimination against sex workers and people living with HIV — which is already pervasive in the broader community.”

CJ’s case also exposed the flawed notion that the positive population is solely responsible for preventing onward HIV transmission. Criminalising HIV transmission contradicts the most essential prevention message: that every person has a responsibility to take all reasonable precautions to avoid contracting an STI or HIV.

In march, the HIV community lost a giant of the sector: Professor david Cooper.

As director of the AIdS unit at St Vincent’s Hospital Sydney and head of the Kirby Institute from its inception, Professor Cooper was at the forefront of Australia’s HIV response from the very beginning.

His groundbreaking research led to the first written description of the seroconversion process. Professor Cooper was also one of the first clinical scientists to recognise the metabolic toxicities of antiretroviral therapy and was the HiV instrumental in proving the efficacy of community combination treatment — a key lost a giant of development that undoubtedly saved the sector: countless lives worldwide. As a result, professor Professor Cooper became an international david cooper figure in the global battle against HIV/AIdS. Although a world-leading HIV clinician and researcher, Professor Cooper was remembered most as a humanitarian. In the earliest days of the HIV epidemic there was much ignorance surrounding the disease, with some hospital staff refusing to take food trays into patients’ rooms. Professor Cooper was quick to instruct his staff to always treat people with HIV with compassion, dignity and respect.

A strong advocate of community engagement, Professor Cooper gained much inspiration from people with HIV over the years — and much humility.

And for that, he was truly loved. At a memorial service at Sydney Town Hall in June, Professor Cooper was remembered as “a friend, a doctor, a leader, and a true warrior who worked tirelessly to the very end”.

positiveliving l 8 l Summer 2018–2019

2019 HIV

in

WITH A NEW YEAR ALMOST UPON US, DOMINIC BROOKES LOOKS AHEAD TO SOME OF THE EMERGING ADVANCES WE CAN EXPECT TO HEAR MORE OF IN 2019.

PROMISING TRIALS

STEM-CELL SUCCESS

The near 40-year quest for an HIV vaccine received hopeful boosts this year. results from a South African trial showed an experimental vaccine to be safe and to show promise when it was found to trigger strong immune responses in both adults and monkeys. While previous vaccines have usually been limited to specific regions of the world, this particular candidate combines different HIV viruses. The aim, say researchers, is to provoke immune responses against a wide variety of strains of HIV. encouraged by the early-stage results,

Scientists in Spain have managed to remove HIV from six patients using stem-cell transplants. researchers discovered that five of them had an undetectable HIV reservoir in their blood and tissues and that, in the sixth, the viral antibodies had completely disappeared seven years after the transplant. The patients are keeping up their antiretroviral treatment, but researchers believe the virus may have been completely removed from their bodies.

Scientists remove HIV from six patients using stem-cell transplants

AN INGESTIBLE PILLBOX

researchers will run a new vaccine trial next year that will include 2,600 women at risk of HIV. Human trials for another HIV vaccine are also to begin in the uS in 2019 after researchers from the National Institute of Allergy and Infectious diseases found it generated antibodies in mice, guinea pigs and monkeys (it also neutralised dozens of HIV strains). Slated to begin in the second half of 2019, the trial will provide investigators with an opportunity to improve the vaccine by making it more potent and provide more consistent results.

News of a capsule that can deliver a week’s worth of HIV drugs in a single dose caused a stir this year. This type of delivery system, say researchers, will improve people’s adherence to their HIV treatment schedule. The capsule — described as an “ingestible pillbox” — consists of a star-shaped structure with six arms than can be loaded with antiretroviral drugs. After it is swallowed, the capsule gradually releases its contents. Preliminary tests in pigs showed that the capsules were able to successfully lodge in the stomach and release three different drugs over one week. The capsules are designed so that once the drugs are released, they disintegrate into smaller components that can pass through the digestive tract.

The same technology can also be used to deliver PreP. researchers calculate that moving from a daily dose to a weekly dose could improve the efficacy of PreP by approximately 20 percent. When this figure was incorporated into a computer model of HIV transmission in South Africa, it showed that 200,000 to 800,000 new infections could be prevented over the next 20 years. A clinical trial will continue to run in 2019 to further test this exciting new delivery system.

A TREATMENT REVOLUTION Perhaps even more exciting than the ingestible pillbox is the news surrounding long-acting injectables. earlier this year, phase II trials found injectable therapy as — if not more — effective than daily oral treatment. Imagine going to your doctor only once a month, getting a jab, and not thinking about treatment again until your next appointment? And it gets better. In a more recent study, participants tolerated a three-monthly injection just as well as a monthly shot. Injectable therapy also has the potential to revolutionise the way people take PreP. Phase III studies are now underway and are expected to reach their end point by the latter part of 2019.

Inspired by Timothy Brown — who had HIV eliminated from his body after undergoing a stem-cell transplant to treat leukaemia in 2008 — researchers say the results could open the door to designing new treatments to cure HIV. A clinical trial will begin in 2019, during which antiretroviral treatment will be stopped in some of the patients and new immunotherapies provided to check if the virus returns.

CLOSER TO A CURE French company Abivax has shown in a clinical trial that the drug ABx464 can inhibit HIV’s ability to replicate itself. This, say researchers, has the potential to form the backbone of a functional cure for HIV. The key to its potential is that the drug can target the reservoir of HIV that remains dormant within blood cells (other therapies suppress the virus but don’t reach the reservoir). Crucially, ABx464 doesn’t just reach the reservoir of HIV hiding in cells, it also targets the latent virus hiding in the intestines — the largest reservoir of HIV. The company expects to run another clinical trial in 2019 to confirm the effects of ABx464 in the long term.

Around 200 participants will be followed for six to nine months in order to find the maximum level of reservoir reduction and to learn how long it takes to achieve it.

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30MILESTONES

To mark the 30th anniversary of World AIDS Day, Rebecca Bensonlists the maj 1988

some. it is also later discovered that, used by itself, aZt quickly becomes resistant to HiV.

World AIdS day is devised as an opportunity for people worldwide to unite in the fight against HIV, to show solidarity with people living with the virus, and to commemorate those who have died from the disease. Held on 1 december, the theme of the inaugural World AIdS day focuses on children and young people. To mark the event in Australia, the Australian AIdS memorial Quilt goes on display for the first time.

Following further protests by AIdS activists, Australia’s drug licensing system is finally reformed, enabling faster and improved approval processes for new drugs and treatments.

1991 HOBART, 1989 1990

very few positive people are publicly visible. At the closing ceremony, a group of around 20 protesters storm the stage and identify themselves as HIVpositive. The moment is widely considered to be the birth of AIdS activism in Australia.

1989 condoman makes his first appearance in an awareness campaign targeted toward the aboriginal and torres strait islander population.

The third National Conference on HIV/AIdS in Hobart opens with the governor-general comparing AIdS to the “black death”.

Around 80,000 Australians are thought to be living with HIV. due to the fear and hysteria surrounding the virus at the time,

australia’s First national aids strategy stresses a partnership between government, doctors and affected communities. it forms the basis of australia’s HiV response and relies heavily on the capacity of the involved groups to respond early and effectively — this proves instrumental in lowering infection rates before government-funded prevention programs become operational. also key to the response is the recognition that social action would be central to controlling the epidemic. the australian HiV response has since been lauded and replicated worldwide.

The Sydney chapter of the AIdS Coalition to unleash Power (ACT uP — whose slogan is Silence=death) forms and a “diein” demonstration is held outside the Australian drug evaluation Committee’s office to protest the lack of treatment access. Other Australian ACT uP chapters soon emerge: in melbourne, Brisbane, Canberra and Perth.

after an agonising wait, aZt — the first drug to treat HiV — receives australian approval.

However, its extreme side effects — intestinal problems, nausea, anaemia, diarrhoea, vomiting and headaches — prove too toxic for

1993 For the first time, the commonwealth disability discrimination act includes HiV/aids — making any related discrimination illegal in australia. eve van Grafhorst — “the little girl who Australia shunned” and one of the first Australian children to be infected with HIV via a blood transfusion — dies.

1994

two major clinical trials find that combining antiretroviral drugs delivers a better clinical outcome than using drugs one by one.

1996 The International AIdS Conference in Vancouver, Canada, heralds the scientific advances on HIV treatments, including the new paradigm of combination therapy and the benefits of a new class of antiretrovirals known as protease inhibitors. “The protease moment” — as it is dubbed — is later hailed as a major turning point in the fight against HIV/AIdS. Combination therapy soon becomes superseded by a new approach to HIV clinical management. Known as Highly Active Antiretroviral Therapy (HAArT), it consists of three or more HIV drugs and becomes the new standard of care.

anwernekenhe 1 is held at Hamilton downs in the northern territory. it is the first national sexual health conference organised specifically for the aboriginal and torres strait islander lGbt community.

the federal government approves funding for viral-load testing for all people living with HiV.

The Paris AIdS Summit Heads of Government issues the Paris declaration. Now known as the GIPA Principle, it resolves to support: “A greater involvement of people living with HIV/AIdS through an initiative to strengthen the capacity and coordination of networks of people living with HIV/AIdS and community-based organisations.”

The World Health Organisation (WHO) announces AIdS as the fourth-biggest cause of death worldwide, and the number-one killer in Africa. In all, 14 million people have died from AIdSrelated illnesses since the epidemic began.

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1997 1999

M A R K I N G W O R L D A I D S D AY • T H I R T Y Y E A R S • 1 9 8 8 –2 0 1 8

S OVER30YEARS

jor events and advancements in the HIV timeline over the past three decades.

2000 australia records its lowest annual number of HiV diagnoses since national notifications were introduced — 656. However, though they remain low by global standards, rates begin to rise again, with transmission continuing to be predominantly through sexual contact between men.

2002 The Global Fund to Fight AIdS, Tuberculosis and malaria — a partnership between governments, civil society organisations, the private sector, and affected communities — is established. As of the end of 2017, the Global Fund partnership has saved 27 million lives.

2008 the swiss national aids commission issues a statement for doctors in switzerland on the safety of HiV treatment to reduce transmission. Known as

the “swiss statement”, it states that an HiV-positive person on effective treatment cannot transmit the virus through sexual

contact. While the swiss statement was controversial when first published, it is now established as scientific fact.

2010 results from a uS trial find that — when taken daily by HIVnegative people — the antiretroviral drug Truvada reduces the risk of contracting HIV by more than 90 percent.

Widely predicted to lead to high instances of condomless sex and unleash an explosion of STIs, PreP (preexposure prophylaxis) sparks fears of a public health catastrophe and is derided as a “party drug”.

Australia escapes such scaremongering.

From the outset, community organisations frame PreP as another tool in the HIVprevention kit — alongside condoms, negotiated safety, and treatment as prevention. the Hptn-052 study (more than 1700 people in eight countries over six years) reports that antiretroviral treatment dramatically reduces the risk of HiV transmission in sero-mixed heterosexual couples. indeed, the study is so effective that it is immediately halted so that all participants can start treatment.

2014 The PArTNer study reports no HIV transmissions after sero-mixed couples engaged in condomless sex more than 44,000 times (the final results will show no transmissions after 58,000 acts of condomless sex). many in the HIV community consider the PArTNer study a game-changer.

2015 the findings from the start (strategic timing of antiretroviral treatment) study provide clear, unequivocal evidence of the value of starting treatment as soon as possible — ideally, upon diagnosis.

2016 The Therapeutic Goods Administration approves Truvada for use as PreP to protect highrisk populations against HIV. The announcement comes as Australian leaders in HIV prevention meet to discuss the national implementation of PreP as a strategy for the elimination of HIV transmission in Australia. prep trials commence in nsW, Victoria and Queensland.

2017 australia’s treatment guidelines are changed to allow people with HiV universal access to antiretroviral treatment, irrespective of cd4 count.

The 20th International AIdS Conference is held in melbourne, To coincide with the conference, the melbourne declaration calls for Australia’s HIV response to be revitalised to take advantage of the latest developments in HIV treatment and prevention.

With study after study showing that an HIVpositive person on treatment with an undetectable viral load is unable to pass on the virus, organisations around the world — including WHO, the uS Centres for disease Control and Prevention, and uNAIdS — endorse the u=u message: undetectable = untransmittable.

positiveliving l 11 l Summer 2018–2019

2018 after an initial deferral, prep receives pbs listing in australia, cutting the cost of truvada (the drug used as prep) drastically, with an estimated 31,000 people — mostly men who have sex with men — benefiting from the decision. Hailed as “an essential step in australia’s response to HiV”, the move ushers in an era of shared responsibility for HiV prevention and liberates thousands of men from the fear of sex — a fear that has hung over the gay community for decades.

The Australian-led Opposites Attract study continues to demonstrate the effectiveness of treatment as prevention: latest results show zero risk of HIV transmission to a negative sexual partner.

World aids day marks its 30th anniversary. Globally, there are more than 37 million people living with HiV/aids.

HIV+THE BODY

explaining the effect HIV has on particular parts of the body

The bellows First, the basics — pay attention at the back; the lungs are situated in the chest. Both protected by the ribcage, the right lung is larger than the left (the extra space leaves room for the heart). The lungs are covered with membrane, which allows them to expand and contract as we breathe.

The role of the lungs is to absorb oxygen from the air and transfer it to the blood. The heart then pumps the blood through the body to provide oxygen to tissue and organ cells.

At the same time, waste in the form of carbon dioxide moves in the opposite direction to be exhaled.

Some lung conditions — such as bacterial pneumonia, pleurisy and bronchitis — occur more often in people with HIV, and can be more serious (particularly if the person has a compromised immune system). Pneumonia due to pneumocystis is common among people with HIV, although rare in countries with modern healthcare.

The cancers Kaposi’s sarcoma and non-Hodgkin’s lymphoma affect the lungs, but again, these conditions are very rare among people on treatment and in care. Tuberculosis (TB) is seen in increased rates among people with HIV. Indeed, globally, TB is the leading cause of illness and death among people with HIV (people with weakened immune systems are particularly vulnerable to TB).

Lung cancer is more common in HIV-positive people than in the general population. Greater rates of smoking may account for this higher risk (people with HIV are twice as likely to smoke than their negative counterparts). Smoking is also the leading cause of chronic obstructive pulmonary disease (COPD), a group of lung diseases which cause breathing difficulties. Studies have shown that people with HIV are at

an increased risk of COPD — whether or not they smoke.

However, smokers are much more likely to report symptoms of COPD and — according to one study — smoking has a greater impact on COPD in positive people than in negative people. And whereas COPD usually affects the general population in their 50s and 60s, it is being seen at younger ages in people with HIV. As smoking is responsible for a lot of lung disease, the best thing for your lungs is to quit smoking (or never start in the first place).

Quitting smoking can help preserve remaining lung function and have a positive effect on many other aspects of your health. Cardiovascular exercise — walking, running, cycling, swimming, dancing and so on — helps your lungs and heart work at full capacity. It also improves the body’s oxygen intake and is great for maintaining lung health.

The more you exercise, the more efficient your lungs become.

Creating strong, healthy lungs through exercise helps you to better resist ageing and disease. If you do develop lung disease, exercise helps to slow the progression and keeps you active longer. Adopt an exercise

routine you enjoy, as you may not stick with it if you’re bored or unhappy. It’s also an idea to vary the activities to keep things interesting over time. Breathing exercises also improve lung health. Studies have shown that deep breathing — even for just a few minutes — is beneficial for lung function. (See sidebar.)

As is often mentioned on this page, eating a nutritious diet is good for overall health. A healthy diet also seems to influence lung function and the risk of lung disease, including cancer. Many studies have associated improved lung function with the intake of high antioxidant and anti-inflammatory nutrients, which are found in fresh fruits, vegetables and fish. It’s also important to protect yourself against the flu by getting a flu shot each year as the dreaded lurgy further stresses your lungs.

Finally, ensuring that you receive regular check-ups at your HIV clinic will mean that you are monitored and treated for any possible HIVrelated lung problems that may arise.

Also, taking your HIV treatment as prescribed will keep your immune system strong. If you experience any kind of breathing problem, visit your health professional.

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Breathe in . . . and breathe out

n sit somewhere quietly, and slowly breathe in through your nose.

n then breathe out at least twice as long through your mouth. it may help to count your breaths. For example, as you inhale, count 1-2-3-4. then as you exhale, count 1-2-3-4-5-67-8.

n shallow breaths come from the chest, and deeper breaths come from the belly, where your diaphragm sits. n be aware of your belly rising and falling as you practise.

n When you do these exercises, you may also find you feel less stressed and more relaxed.

newsouthwalesnews PositiveLifeNSW

HIV STIGMA: Alive and deadly at the end of september, positive life nsW held a forum with people living with HiV (plHiV), HiV service providers and other representatives about the impacts of stigma and discrimination on plHiV — especially in healthcare settings. these included the impact of repeated trauma, shaming and ‘othering’ from healthcare providers, and the healthcare system more broadly.

Today, we know HIV doesn't kill us, but stigma and discrimination do have a major impact on our health and wellbeing. Stigma is that sense of disapproval about HIV which can be blatant and unmistakeable, or something very slight: a look, a step back, a shake of the head, a word, or silence. It can be found in a poorly crafted media article, or in the ill-informed words of a friend, relative or stranger and often intersects with prejudice based on ethnicity, gender and sexuality. during the forum, we talked about how HIV stigma and discrimination made us feel, and we shared our personal stories about the impact they have on us

perpetuate stigma with their patients, exacerbating shame and trauma. We also explored data from the Centre for Social research in Health’s national Stigma Indicators monitoring Project which found that 25 percent of the general public said they would behave negatively towards PlHIV because of their positive status.

While the forum confirmed that HIV stigma and discrimination are daily realities for us, it also highlighted our strengths and the ways we utilise a range of different strategies to manage HIV stigma and discrimination to combat fear of HIV, shame and phobia. It reminded us that PlHIV are resilient warriors in the battle against HIV stigma and discrimination, remaining actively engaged in our health and wellbeing. in our daily lives and in healthcare settings. everyone mentioned feeling pressured to provide education along with the companions of racism, sexism and other forms of prejudice.

A transgender woman spoke

about the burden of shame, and the risk of isolation for PlHIV when they internalise negative feelings arising from stigma and discrimination. An Asian gay man living with HIV shared how stigma and discrimination made

him feel like a “second-class citizen”. This ‘othering’ negatively affected his selfesteem and impacted on his ability to access clinical services.

Clinicians shared how colleagues can unwittingly

l read the HiV stigma and discrimination Forum report here. l If you live with HIV and need support or contact, call Positive life on (02) 9206 2177 or click here to look us up online.

Subscribe to Positive Life’s ebulletin — Life.mail — to stay in the loop with NSW-based HIV events, news and opportunities delivered to your inbox!!

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PositiveLifeNSW 414 Elizabeth Street Surry Hills 2010 | ) (02) 9206 2177 or 1800 245 677 | w positivelife.org.au positiveliving l 13 l Summer 2018–2019

victorianews

Thirty years on, thirty years strong living positive Victoria is marking 30 years as an organisation that has more than met its founders’ original vision and purpose.

Adopting an advocacy, support and empowerment model, living Positive Victoria has helped countless people build resilience by challenging stigma. We have done this via various peer-led programs through which people have been able to share their lived experience of HIV/AIdS. living Positive Victoria’s CeO richard Keane says, “It’s almost impossible to convey the lived experience of HIV, even though it’s something I engage in daily. each person living with HIV has a unique, individual experience that is valued, valid and intersects with identities, genders, age, ethnicity, agency, and is now intergenerational. It has taken an entire communityled response to get us to where

we are today.”

And we have Outgoing president come a long way.

Christabel Millar and The u=u moment newly appointed and the efficacy of president Adam Ehm treatment as prevention means at LPV’s recent 30th people living with anniversary party.

HIV (PlHIV) who adhere to effective treatment and achieve an undetectable load cannot sexually and internalises the way PlHIV transmit HIV to their partners. engage with others, while This means PlHIV can live affecting the care they give to healthy sexual and reproductive themselves and their overall lives. “It’s life changing. It’s life quality of life. It also creates affirming,” says Keane. barriers to testing. despite these advancements, In contributing to Australia’s stigma still breeds an HIV response, living Positive environment where people Victoria remains as vital as it was choose not to disclose their 30 years ago. The insight, the positive status out of fear the empathy, the people, the culture impact will have on their families, workplace relationships and the community connection continue to inform the work and broader communities. that we do. This ensures our Stigma isolates, disempowers

relevance moving forward and our capacity to adapt to change.

For example, living Positive Victoria puts great investment into young people living with HIV. We do this in the hope that it will create the leaders of the future. “We aim to provide what we can in order for young people to become well-informed and have good support networks,” says Craig Burnett — a member of living Positive Victoria’s Gen Next program. “With this

program we hope young people living with HIV will be more secure in themselves. We also believe that we are supplying the tools for the youth of today to become the leaders of tomorrow,” says Burnett.

With transmission rates on the up among heterosexuals, we’ve got a bit of work ahead of us (especially among people from diverse cultural backgrounds). We are continuing to collaborate with Positive Women Victoria to reach more women. We are also looking forward to trying innovative new ways to engage more heterosexual men living with HIV — supporting them to get on treatment, stay on treatment, achieve a low viral load, and prevent onward transmission.

It is at this 30-year point in living Positive Victoria’s journey that we place value on our past while taking steps to define our future.

Adam Ehm announced as new president the board of living positive Victoria (lpV) has announced adam ehm as the new president of the organisation.

The appointment comes at a time of great change around HIV treatment and prevention. It also comes at a time when there is a great need for a strong sector focus on the mental and physical wellbeing of all people living with HIV in Victoria. In this regard, ehm brings to the role a commitment to continuing to

advocate for the health, wellbeing and rights of people living with HIV. “I’m extremely honoured and privileged to be the incoming president of living Positive Victoria. I’d like to acknowledge previous president, Christabel millar, whose professionalism and commitment to the role has been exemplary,” says ehm. “I know first-hand the value of innovative programs, workshops, and advocacy outcomes that the

organisation provides for its members, and my varied engagement with the HIV sector will complement the role well.

Sound governance, a continued focus on diverse communities and sustainable planning will remain a continued focus of the role. I look forward to working sector-wide in the best interests of all people living with HIV in Victoria.” ehm will also be focused on helping to drive lPV’s mission

and vision of enabling and empowering all people affected by and living with HIV in Victoria. The organisation does this so that PlHIV can play an important role in bringing about an end to the HIV epidemic in Australia.

At a time when stigma and discrimination remain one of the biggest barriers to community attitudes around HIV, lPV is in its strongest position ever in terms of providing services and

facilitating a range of resiliencebuilding programs for people living with HIV. As president, ehm will ensure that the organisation continues to have meaningful engagement with the HIV sector nationally and internationally. By leading the organisation into its next phase of growth and empowerment, ehm will further position lPV as a leading influence in the HIV response in Victoria.

living positive victoria | Suite 1, 111 Coventry Street Southbank 3006 | )03 9863 8733 | w livingpositivevictoria.org.au

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POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCES OF LIVING WITH HIV

Gay, Muslim and living with HIV SHAMAL WARAICH DISCOVERED HE WAS HIVPOSITIVE IN OCTOBER 2013. HIS DIFFICULTY RECONCILING BEING MUSLIM AND GAY HAS AFFECTED HOW HE RECEIVED HIS DIAGNOSIS. “I had gone in to get tested for something else. That’s when it came back that I had HIV and my world just fell apart. I don’t even remember what [the health advisor] said, I was scared to face the reality of it. I just wanted the ground to swallow me up.

“I felt so much shame and guilt around HIV. It is seen as a gay man’s disease. In the Asian community, there is this perception that this is a sinful thing. I internalised that homophobia, and thought, ‘I deserved that — this is probably my destiny, I'm going to die young and go to hell.’”

Shamal kept his diagnosis to himself for two years.

“I isolated myself. I didn't tell anyone —only my doctor and a counsellor knew. Having this secret took me to some dark places, and I almost contemplated ending my life.”

Shamal only recently decided to tell his parents about his positive status. He had been worried about telling them for years. “My mum was really supportive. She said, in Urdu, ‘I love you as my son. Whatever you bring to my doorstep, I will support you regardless.’ It was such a relief to tell her. I was expecting her to ask me questions, like if I was going to die, but she was just very loving.”

His older brother and his

Having this secret took me to some dark places, and I almost contemplated ending my life. sister-in-law, Saier and Rabia, have also been supportive. “Rabia has always been able to sense when things are a bit iffy with my mental health. When I told them about the HIV diagnosis, she said, ‘Why didn't you just tell us? We could have been there for you.’”

It has taken Shamal five years to accept the support he was offered and be confident to talk

about his positive status. “I have got to the point in my life where I’m proud to say who I am: Muslim, gay and living with HIV. [As a gay man] I’ve come out so much in my life, and now I have to come out about my HIV status.

I’ve learned to not be defensive, but to go into educational mode.

But it puts the onus on me. I find myself having to comfort

someone else who is finding it hard to deal with — ‘Oh my God, you’re HIV-positive, I’m really sorry’ — and then I have to comfort them!”

Now that Shamal has told everyone in his personal life, he’s on a mission to educate others in the South Asian community about HIV. “Sexual health clinics do amazing work, but for Asians

positiveliving l 15 l Summer 2018–2019

it’s a struggle to get through the door.”

Shamal knows this from experience. Despite living as an openly gay man and being wellinformed about HIV, he found it hard to overcome the stigma.

“Most gay men are quite clocked on, going to get tested regularly.

In my experience, people of colour are like, ‘What if my mum sees that? What if it comes up on my internet history?’”

People are still very nervous about talking about such things, says Shamal, and it’s still very difficult for Asians to talk to each other about sex. “In Urdu, for instance, we don’t have a word for sex or sexuality or LGBT — even though these cultures exist in Pakistan. If there is a word it’s derogatory, and I don’t want to be known as that.”

There are even fewer conversations about sexual health.

“A lot of people don't know that you can be on treatment and that [HIV] is not a death sentence. People have normal lives. It’s just two pills a day. I set an alarm on my phone and it has just become part of my routine. I am undetectable, which means that I cannot pass [HIV] to a partner — but not everyone is able to grasp that concept.”

The difficulties faced by HIVpositive Muslims is something else many people find hard to grasp, says Shamal. “I never saw stories of people of colour who had contracted HIV. To this day, I have never come across someone like me and it's incredibly lonely.

I just want to say to someone, ‘You understand, right? How difficult it is as a Muslim and being HIV-positive?’”

THE

backpage

According to a new report, older people with HIV experience higher rates of pain than similarly aged HIV-negative people. Here are

FOR MANAGING CHRONIC PAIN 1 Learn deep breathing exercises or meditation techniques to help you relax.

2 Try to reduce stress in your life — stress exacerbates chronic pain.

3 Boost chronic pain relief with natural endorphins released through regular exercise.

4 Get a regular massage. Used by people living with all sorts of chronic pain (including back and neck pain), a massage can help reduce stress and relieve tension.

5 Find ways to distract yourself from your pain. When you focus on your pain it makes it worse. Engage in an activity that concentrates your mind elsewhere.

THE INFLUENCERS MICHELLE TOBIN

Michelle Tobin is an Aboriginal woman of the Yorta Yorta Nation and has lived with HIV for 28 years, during which she has experienced many levels of stigma and discrimination. Having being shunned by immediate family members after she told them of her positive status, Michelle was determined to become a vocal advocate for Aboriginal and Torres Strait Islander people living with HIV. “My motivation to get involved in the HIV sector was twofold,” says Michelle. “I wanted to prevent the stigma that my daughters and I endured, and I wanted to educate young people about the importance of safer sex and protecting themselves. I had a world of information that was inside of me — and I needed to share that.” Which she did, through — among many other forums — the HIV Speakers Bureau.

Currently chair of the Anwernekenhe National Aboriginal and Torres Strait Islander HIV/AIDS Alliance, Michelle is also convener of the Positive Aboriginal Torres Strait Islander Network (PATSIN) and an active member of the National Network of Women Living with HIV (the Femfatales). “My need to be within these groups is that I have lived with this virus for almost 30 years and I have been given so much over the years, and it was time to give back and to help those within the broader community.”

TRENDING NOW

DULSE

Dulse is a strain of edible seaweed that has three times the nutritional value of kale. Hailed as the new superfood, the burgundy algae is packed with iron, calcium and magnesium. It is also particularly rich in iodine, and vitamin B6 — which regulates mood and helps the body cope with stress. Picked by hand from the shoreline, dulse is then dried, chopped or ground for various culinary uses. With its salty taste, this sea vegetable can be used as a herb to flavour soups and salads; it can also be dry-roasted and then crumbled to be used as a topping. It is often consumed as a snack and — when fried — dulse tastes of bacon. Still not sold on seaweed? Researchers claim dulse may be the most productive protein source in the world.

QUOTE/UNQUOTE

We now know that PrEP implemented quickly, at a large scale, and targeted to high-risk populations can help turn the HIV epidemic around.

The Kirby Institute’s Professor Andrew Grulich responding to transmissions declining by a third in NSW positiveliving l 16 l Summer 2018–2019