Positive Life NSW Blog

2015: A game changer and a good year for PLHIV in NSW

Posted by on in Advocacy and Policy

IMAGE: Large crowd celebrating

2015 has been good year for people living with HIV in New South Wales, writes Positive Life NSW’s Lance Feeney.

2015 might be drawing to a close, but it’s been a humdinger of a year for PLHIV. On the first of July, after 15 years of prodding and poking and banging on to anyone who would listen, we finally got HIV community dispensing up. Then on 1 October the NSW Government enacted its pre-election commitment to waive the PBS co-payment for S100 (HIV) medications in NSW, and the office took on a semi-holy ambience as we reverently began lighting devotional candles in front of a photo of Minister Skinner. You’re our hero Jillian.

After years of submission writing, waiver costings, preparing evidentiary rationales and espousing why these changes made good public policy sense, our pleas had finally been heard and the barriers were coming down. Now we could look forward to a future where all diagnosed people living with HIV could conveniently access treatment, regardless of their individual financial circumstances and ability to get to a hospital pharmacy. It was a very rare moment and one worth savouring and celebrating. And, celebrate we did, long into the night, knocking back Long Island Ice Teas in the Newtown Hotel.

As these changes become part of history, we’ll no doubt forget why they were so important. But for now, they are new and amazing. And, poz-people are phoning, emailing and completing our survey to tell us why the changes have made such a huge difference to their lives. Some of the phone messages have been truly heart-warming. Calls to congratulate us and let us know that the changes have made a significant difference to them and their close friends. They’ve told us about improved convenience of getting all their medications at the one place and about the service and professionalism they receive from chemist staff. They tell us about understanding, and respect, and courteousness, and above all helpfulness. 

So, although there are still some teething issues to sort out on the supply side, we think that overwhelmingly, HIV community dispensing is a big success and people are either satisfied or very satisfied with the way it’s working. So far, over 100 chemists in NSW have signed up to dispense HIV meds and we anticipate that these numbers will grow. Many are in the Sydney Metro area; however others are located in the Armidale, Tamworth and Wagga and up and down the NSW coastal fringe. The map on our website shows their locations and new red locational dots appear every week. 

When it comes to waiving the co-payment for HIV medications, we know that the changes have been particularly warmly welcomed. For years we’ve been financially weighed down by the cost of both HIV and other medicines. Many of us live with a range of debilitating chronic health conditions in addition to HIV and we struggle to balance the cost of medical and health related expenses with other living expenses. For some people it’s a difficult decision between buying food and medicines and paying for rent and utilities. 

As one 54 year old poz gay man recently explained to me:

“I work part-time and my income is limited, particularly after I pay rent and other household expenses. The cost of all my medications has gone through the roof - $2,262 for non-HIV meds and $678 for the HIV meds. Although the PBS Safety Net provides some help after you get to the threshold ($1,453) they don’t make it easy to claim the benefit and I don’t reach the threshold till late into the year. Being able to get my HIV meds for free will make a huge difference for me and mean I can afford to buy both HIV and other meds, food, and also meet the cost of rent and utilities. “

So let’s take a moment to reflect on these two big wins – HIV community dispensing and free HIV medications. 2015 has been a bloody good year for PLHIV and although it will soon pass into history, the legacy of these policy changes will live on and affect our lives in very positive ways into the future. Structural changes like these help to normalise HIV, counter exceptionalism and reduce HIV stigma and discrimination. It’s a marvellous outcome and we should all thank the Baird Government and Minster Skinner for having the foresight and guts to go against the naysayers and make this happen for us. The changes will help all people to take up and stay on treatment and that means better health outcomes for us and less HIV transmission in the community. It’s a win, win situation! Thanks Minister Skinner and Premier Baird! We’re very appreciative and grateful.

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