Choose life, choose positivity
Image: Craig Cooper, CEO and Jane Costello, President of Positive Life NSW Credit: Supplied
BY ALEX EUGENE
Positive Life NSW started out as a small gathering of people who were living with HIV in the late 1980s, who came together to talk and support each other.
Such was the need for connection and solace at the time, that the small gathering quickly turned into a network, and then a fully fledged organisation that is today a funded NGO.
Craig Cooper, the CEO of Positive Life says people weren’t being represented well enough and needed advocacy which the organisation now provides.
“People were being stigmatised as a result of the infection,” says Craig.
Positive Life is what Craig describes as a “peer organisation”- which means it’s almost entirely run by people living with HIV. This means people who come to them can be assured of empathy, sincerity and sound advice.
One of the great success stories of Positive Life is when they finally won the battle to have medications rolled out into the community – after almost 12 years of lobbying for it.
They started pushing for medications to be available at local pharmacies in 2005, and finally by 2016 that dream became a reality. Craig says that being able to go to a local chemist instead of trekking to a hospital every week – where a person is made to feel with every visit that they are “sick” or “different”- has a huge impact on how a person feels and will deal with their diagnosis.
“It makes a big difference to people’s lives when they don’t have to travel so far. It means it’s manageable, more accessible, and it’s not so confronting,” he says.
A simple trip to the chemist means people can get on with their lives instead of constantly feeling the stigma of HIV.
After winning this battle, Positive Life has lost no time working on the next.
Currently, people diagnosed with the infection have to wait a minimum of six weeks before they can get access to medication, because of pathology turnarounds and wait times to see doctors.
But during that time the clock is ticking, and as Craig says,”the virus is doing damage to their immune system.”
Even worse, only roughly 50% of people diagnosed will have their prescription in that period. Most will be left waiting several months for treatment.
It’s been almost a year now, but Positive Life won’t stop the fight until HIV is treated with the same sensitivity and priority as other comparable diseases like tuberculosis.
“People with HIV should be able to get their medications on the day they are diagnosed,” says Craig.
