NAPWA

True to the main argument in Alvin Toffler’s book, Future Shock, change is not slowing, it's accelerating. Neil McKellar-Stewart recalls how things have changed and prepares us for more to come.

There's much fertile ground for the weeds of hopelessness, fear and cynicism to grow as we look out over our world.But for every one of these negative drivers, I like to think that there are many more which drive us towards the life-affirming.

As Liza might say: ‘It’s no good sitting alone in your room, come hear the music (of life) play.’

One of the biggest and most important scientific meetings on HIV has just finished in Cape Town. The International AIDS Society (IAS) Conference on HIV Pathogenesis, Treatment and Prevention is held every two years and lets the world see what the scientists and researchers are doing in finding new treatments for HIV and how HIV interacts with the human body. ‘Ho hum!’ some may say. But when you reflect on the lived experience of people with HIV in Australia over the past 25 years it shows us that we have indeed come a long way. In fact,the whole landscape for people with HIV has changed dramatically.

I remember the Living Well Conference held in Adelaide in 1990, which was organised by the then National People Living with AIDS Coalition (NPLWAC). You could almost touch the anger it was so present. People felt powerless in the face of AIDS. Add to that the side effects that many were experiencing on the new drug, AZT. At the time it was given in huge doses which proved toxic and ineffective – up to two grams a day, every four hours around the clock. It was the first HIV drug to undergo human trials, but they were stopped in 1987, earlier than planned because out of the 282 participants only one tenth actually completed 24 weeks of the trial, and 20 had died.

How things have changed. Now we have a suite of drugs which are generally well-tolerated and highly effective and get better each year.

I remember a couple at the same conference who were both living with HIV and who had conceived a child but had been told that their child would be born with HIV and wouldn’t survive its first year. They chose to have the pregnancy terminated. I remember the rage and pain of the woman and her heart-wrenching story of how the medical establishment had robbed her of her child.

How things have changed. Now the transmission of HIV from mother to child has been effectively stopped. IAS 2009 had exciting news about how children can be born to poz-mums and remain negative during birth and after, even while breastfeeding.

Those of us who have lived through the past 25 years have experienced so much change. The worst years when family, friends and lovers passed from our sight, often in the most humiliating of ways, seem like a sad memory. We have seen stigma, discrimination, hatred and exclusion; but also love, joy and commitment from our communities, family, friends, carers and even strangers.

The indomitable spirit of human kindness and compassion has thrived and blossomed in a landscape of suffering.

I read in the March issue of the journal AIDS Care an article entitled: The fork in the road: HIV as a potential positive turning point. Interestingly, of the nearly 150 people who gave their story, nearly 100 of them did not list HIV as being a major current turning point for them. Perhaps this is another indication of how things have changed for the better. HIV is now part of our lives rather than being all of our lives.

The world has changed and so have we. And that change can continue to be for the better if we do the work required on our spirits and in our lives.

What are the changes you are going to make in the coming week . . . month . . . year? Hopefully, they can be changes for the better.

Perhaps you’ll start treatment? If so, there’s a veritable plethora of information available to help you decide. Check out the NAPWA and AFAOAustralian Federation of AIDS Organisations. AFAO is the peak non-government organisation representing Australia's community-based response to HIV/AIDS. AFAO's work includes education, policy, advocacy and international projects. websites or their new booklet: HIV tests and treatments (June 2009 edition) available from your local AIDS Council or positive organisation.

Perhaps you’ll switch treatments? IAS 2009 reported on how well people are doing switching from T-20 (Fuzeon) to raltegravir, for example. The newer drugs work much better than some of the older ones and have fewer side effects.

Maybe it’s a lifestyle change? Partying a little less or getting out and partying more and connecting with new friends? Maybe it’s moving to somewhere where the climate suits your clothes? Or taking up work or study which is more (or less) challenging . . . buying a house . . . setting off on a new adventure . . . or nesting with someone special?

Perhaps you’ll make changes to improve your health? There are numerous ones you can make to reduce your‘SNAPS’ risk factors(Smoking, Nutrition, Alcohol, Physical Activity and Stress). And of all of them, quitting cigarettes is probably the biggest and best thing you can do for your health.

Change is everywhere. It’s up to you to recognise the ones you need to face and whether you embrace them alone or with the help of family, friends or a counsellor.

Neil McKellar-Stewart is HIV Health Maintenance Officer for ACON Northern Rivers’ Office in Lismore. He is a member of NAPWA’s TreatAware Treatment Officers’ Network and regularly writes on health issues for people with HIV.