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News + Events

HIV Long-term Survivors Awareness Day


Written by PWV member and activist Susan Paxton.

Today is HIV long-term survivors awareness day, and on this bright sunny winter’s morning in Melbourne, I reflect on what that means to me.I am one of those lucky ones, having lived with HIV for nearly 30 years now. When I was diagnosed I was told I had 5-8 years to live.

Over the next decade, I lost scores and scores of friends and colleagues to HIV. By the end of 1999, I had 50 CD-4 cells and my viral load was four million copies per microlitre. Then I started taking triple anti-retroviral combination therapy. The changes were miraculous. After having night sweats for the previous decade, living with a heart whose left ventricle was in spasm several times per day and barely able to walk more than 200 meters, I got a new life.

I embrace my ARVs. After nearly 20 years, I’m still on first line therapy. I delight in the fact that my viral load is undetectable and that I can’t transmit HIV to anybody else. How different to when I was first diagnosed. I remember cutting my finger with a bread knife and seeing my blood, and realising that my blood could infect others. I was terrified as a single mum, that I would somehow pass on the virus to my son. And now I live in a world where I can grow old gracefully, with good health prospects.

The impact of HIV on my life has been huge. I would never wish it on anybody. Not before ARVs, and not today, because it still carries so much stigma. Where HIV should be treated as a chronic manageable condition, people still live in fear of it.

My medication keeps me alive and well, and I really am one of the lucky ones. But what about our nearest neighbours and many other people around the planet who are living with HIV and may not be able to get access to the meds they need to stay alive.

Recently there was a drug stock out in Papua New Guinea. Many people who’d been taking ARVs for several years could no longer get access to them. The government clinics simply had no drugs. I don’t know why; whether it was because of bad logistics management or because of corruption. But people had no meds and people were starting to get sick. For the last several weeks, some of us in Australia have been trying to gather and stockpile ARVs and get them sent to PNG.

So, as I reflect on being an HIV long-term survivor, lucky to be alive, albeit with the grief of lost friends, I also reflect on how precarious the situation is for so many people living with HIV today in countries that are not blessed with the great health care provided to us in Australia.