25 years of Positive Living

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01 Dec 2014

In 1989 an information officer at PLWA Victoria called David Stephens created a newsletter and called it Positive Living. The magazine started out small — four A4 pages to be precise — but the articles included in the first fledgling issues were consumed with relish by the organisation's small but growing membership: “AZT: is it good or bad?” and “How can you access other meds?” were among the first articles published. There were also stories about anti-discrimination legislation and how to get housing or onto the DSP.

David Menadue was PLWA Victoria president at the time and sat on PL’s first editorial committee. He also wrote a column called ‘Mind Space’ about his everyday experiences living with HIV.

“With the exception of Talkabout, nobody else was doing that at the time,” says Menadue, “and it seemed to be what people wanted to read.” He adds Positive Living had to be careful not to be perceived as overtly political: “We reported on ACTUP goings-on but tried not to be too out there. We were all so scared of being defunded.”

1994-1998  Bridget Haire: the combination therapy era

In the early 1990s, the PL editorship passed to Bridget Haire, who was employed as an information officer at the Victorian AIDS Council (VAC). Shortly after, she and PLWA Victoria treatment officer Colin Batrouney decided to turn Positive Living into a broadsheet and — in a flash of brilliance — to insert it into the Melbourne Star Observer. The move put HIV out in the community and into the forefront of people's minds.

This was part of a plan both to make distribution more cost effective and to emphasise that HIV issues were important to the whole LGBTI community, not just those living with HIV. Inserting Positive Living into gay community newspapers remained the magazine's outreach mainstay from then on.

The first insert issue appeared in November 1994, just after the pivotal AZT/3TC results had been presented. This marked the beginning of the combination therapy era. Eighteen months later came the first reports of the efficacy of triple combination therapy. “Because these results were so significant, it was critical to engage the community,” Haire says. “And so treatment became a key focus of the publication.”

With the fiasco of early AZT intervention (the Concorde trial) still very fresh in people’s minds, it was important to present all sides of a treatment story — not just the good results, but other issues like side effects and adherence problems.

This holistic approach to information — trying to present the science along with the lived experience — did not go down well with some treatment advocates. “They wanted people with HIV to be told to get on medication now to save their lives,” says Haire. “That wasn’t our role. We wanted to give the information and be part of the conversation.”

To maintain reporting integrity, it was important to tell the whole story about a particular drug as fully as possible. However, there were incidents in the early days of people trying to influence how some stories were told. “We didn’t have internet access back then, and were dependent on journal articles and conference reports from whatever source,” recalls Haire, “— including pharma reps.”On one memorable occasion, a pharmaceutical representative tried to stop a story about side effects going to press. “She failed,” says Haire. “We published the truth as we understood it.”

When Haire and Batrouney moved to the Australian Federation of AIDS Organisations (AFAO) Positive Living went with them and in 1996 the publication became national. The first national issue included an interview with an international researcher who urged people not to start treatment with an inferior protease inhibitor — unboosted saquinavir, the first protease inhibitor on the Australian market.

“This researcher had been pivotal in the development of this drug and was very clear that it was suboptimal,” says Haire. “This was a highly controversial piece of news. And one that Positive Living broke.”

1998-2002  Kirsty Machon: the challenges of treatment

In the late ’90s Kirsty Machon took on the role of editor. During this period, many people were wary of treatment and its long-term toxicities. “Drugs like d4T and the new protease inhibitor class were saving lives . . . but at a cost,” Machon recalls. Positive Living was very much a treatment activist publication and Machon saw it as her job to portray things accurately and give people the facts so that they could make up their own minds. “We also wanted to encourage people to think beyond the negative aspects,” she says, “and consider the new treatments that were coming along.”

Positive Living has always prided itself on tackling the issues that people want addressed. Side effects were a major part of people's lives back then, so tips and tricks to deal with them were constantly on offer in the magazine. “We wanted to help people live a little more easily under what were for some pretty difficult circumstances,” Machon says. This was the reason why the regular feature ‘What’s your problem?’ was created. The doctor's advice column proved so popular that it exists to this day

Despite being funded by Big Pharma, Positive Living has always fiercely protected its editorial independence. “We were occasionally questioned about the influence of corporate sponsorship,” says Machon, “but the pharma sponsors never pressured me to write about any particular drug or to take a particular stand.”

Indeed, Machon was invited to attend a pharmaceutical company function in Thailand and to report back on the findings of a drug they were promoting at that time. “I didn't like its side- effect profile at all and was quite critical of it in my report in Positive Living,” Machon recounts.

During her tenure, Machon was also very careful to position Positive Living to all people living with HIV — regardless of gender or sexuality. For this reason Machon paid special attention to the issues of positive women and heterosexual men.

2002-2007 Paul Kidd:  a period of transition

Paul Kidd characterises his time as editor as one of transition — not only for the publication but also for people living with HIV generally. “I don't know if we quite knew it at the time, but we were entering a more settled period around treatment,” says Kidd.

Positive Living had always been a treatments publication and up till this point had focused on side effects and what drugs were in the pipeline. “We still dealt with that stuff,” says Kidd, “but we were entering a period when treatment was becoming less of a big deal. The emphasis was changing to lifestyle issues relating to HIV. We had to rethink what Positive Living was all about.”

The year 2002 marked 20 years of HIV and Kidd produced a special anniversary issue that year. “I spent some time plotting an HIV timeline that ran through the issue,” he recalls, “and people loved it.”

In 2003, former editor Kirsty Machon wrote a pretty radical article on the fertility options for positive men. “Heterosexual men living with HIV can feel particularly marginalised,” says Machon. “So, I thought it was fair to devote a feature to their issues, including their right to have children.”

It was years before the Swiss Statement or the PARTNER study. However, the evidence was already convincing that treatment provided protection from transmission. This was the first time that men had been included in the positive procreation debate and the article received supportive feedback from readers, as well as some fairly conservative doctors.

“Plus one letter of complaint from someone who took exception to us profiling a sub- population such as straight men,” Machon recalls. During this period, management of PL transferred from AFAO to the National Association of People with HIV (NAPWHA). This was a significant move as the magazine was now back in the hands of people living with HIV.

2009-2014 Adrian Ogier: lifelong and manageable

My first issue of Positive Living talked about how impending changes to same-sex law reform would impact welfare recipients in relationships. It was a subject that would affect many PLHIV around the country so I spent days labouring the copy, and checking figures and quotes.

This established one of my two editorial principles: no matter how complex the issue it should always be written in good, simple English . . . and proofed within an inch of its life. The other was never to print a bad news story unless I could accompany it with something positive. So stories on the risk of heart disease, for example, would usually end with ways you could avoid getting it. The phrase: “Eating well, exercising, drinking less and not smoking” frequented the magazine during my time as editor.

Which kind of sums up the period. By now, HIV had become lifelong and manageable. The things that threaten people living with HIV are pretty similar to the ones that threaten any ageing population. PLHIV just happen to be a little more susceptible to some of them.

Mental health touches us particularly. One column I introduced called ‘State of Mind’ was an immediate hit. And I suspected it might. The column offered a variety of ways to tackle anxiety and depression. Guest therapists wrote on mindfulness, meditation, yoga breathing, massage, and cognitive behavioural therapy.

2014- Christopher Kelly: the future looks bright

Which brings us to the here and now. And the future looks bright: treatments are improving all the time and more people with HIV are living well and living longer. So too, there is an ever-expanding suite of prevention methods available.

Among the most exciting is Truvada as PrEP. Can it really be true that with strict adherence this little blue pill can reduce the risk of HIV by up to 99%? Independent studies across the globe are indicating so. Indeed, a French study — IPERGAY — suggests Truvada can be effective in protecting against HIV when taken intermittently.

Then there are the PARTNER findings. Earlier this year, t he European study found that — providing the positive partner is on treatment and maintaining an undetectable viral load — there is almost zero risk of HIV transmission between poz-neg couples. Speaking as someone in a serodiscordant relationship, the findings are nothing short of miraculous.

And while scientists remain cautious of talking up a cure, for some, sustained remission may be not so far away. But although medical science has made leaps and bounds since the first issue of Positive Living was published a quarter of a century ago, attitudes towards PLHIV remain sadly much the same. Stigma is commonplace — the results of a recent survey left me shaking my head in disbelief. Let’s hope that one day people will regard HIV much as they do diabetes.

As for Positive Living, in the spirit of the times, it’s gone digital and the magazine is available in flipbook format. However, there is a limited print run for subscribers only. Alternatively, you can request to personally receive the electronic version of the magazine. If you would like to subscribe to one or the other — or both! — email me: christopher@napwha.org.au

Whatever the platform, you can be sure that Positive Living will continue to inform and support people living with HIV across Australia. So cheers. Here’s to the next 25 years…