Australians are waiting an average of 466 days for medicines to become affordable and accessible on the PBS.
Stories of the PBS
In the last few months, the Stronger PBS campaign has brought you real life examples of why the PBS needs to be faster, fairer and fit for the future.
We’ve heard from Sally-Anne, who has advocated to help treat her daughter Millie for the symptoms and causes of her cystic fibrosis. We have also heard from Millie, who tempers her dreams and ambitions against the harsh realities of her health condition.
Last month, Rob shared his experience of fighting an aggressive lung cancer and the relief of finding a targeted therapy through the PBS that is keeping it “at bay, beautifully.” Similarly, Maria was fortunate to see the medicine she needed listed on the PBS just in time, but only following a stressful waiting period while undergoing chemotherapy.
These individuals have come together, from Canberra, Stroud and Brisbane, to tell their stories and advocate for a Stronger PBS because they know its life-changing and life-saving benefits.
In response, we’ve seen Australians all over the country send an email to Ministers and local MPs. We are recapping these inspiring stories and giving you one last chance to have your say before the year winds down.
Rob is living with Lung Cancer
Rob was a self-employed truck driver who developed a bad cough, felt incredibly tired and lost a lot of weight. He considers himself “lucky” that within one week of his stage four lung cancer diagnosis, the medicine he needed for his specific mutation was listed on the PBS, reducing its cost from $9,000 to $7.70 a month.
Rob has now been on this targeted therapy for more than three years and his tests confirm that he is doing very well. Today, Rob says “I feel a bit guilty, because I’m so well”.
His story is one that demonstrates the profound value of our PBS, but as his doctor knows, others are not so lucky. Now Rob is supporting the Stronger PBS campaign because he wants life-saving and life-changing medicines to be available for anyone who needs them, when they need them.
Millie is living with Cystic Fibrosis
Imagine the anguish of waiting for access to a vital medicine for your eight-year-old daughter. Then imagine finding out that the medicine has been made accessible, but only for those aged twelve and older. Sadly, this was the experience of Millie and her mum, Sally-Anne. Together, they have navigated the promise and disappointment of the Pharmaceutical Benefits Scheme (PBS).
Millie was diagnosed with cystic fibrosis through the newborn heel prick screening program in 2014. Her mum, Sally-Anne has advocated for access to new therapies that treat both the symptoms and causes of cystic fibrosis. As Sally-Anne emphasises, "You're holding her health in your hands, doing everything you can to keep her well, and you just keep thinking, "Why are we waiting when every day counts?".
We are so glad to report that Millie is doing well and that her mum has become aware of another medicine that will be even better for Millie. Sally-Anne’s fight for a stronger PBS continues because that medicine is not yet listed on the PBS.
Maria is living with Breast Cancer
At the age of 39, on a day as ordinary as any other, Maria was having a shower when she felt an odd lump under her arm. Maria had some initial tests done and the results confirmed what no woman hopes to hear: Breast cancer.
While her treatment was likely to remove her cancer, Maria was at a high risk of it returning in the future. There was, however, a medication for high-risk patients of Maria’s pathological grade that had already been approved for use in Australia by the TGA, but had not yet been listed on the PBS, making it eye-wateringly expensive.
Like Rob, Maria was “lucky” that the medication was listed on the PBS just in time for her.
Maria says, “I cried tears of joy that day. But I also cried for the fact that anyone has to fight this hard, or wait this long, for something that could save their life. No one should have to fight bureaucracy while fighting for their life.”
Every part of the system must work to improve patient outcomes
Lisa Robins, CEO Patients Australia
“Patients Australia is an independent, not-for-profit organisation that is dedicated to championing and protecting the rights and interests of patients. Our work to improve patient experiences and health systems can be significantly bolstered by a stronger PBS. The stories outlined above represent Australians at a range of different stages of health and care. We want to see every part of the system - including the PBS - working to improve patient experiences and outcomes. Without a stronger PBS, Australians will not be able to fully benefit from the incredible developments on offer through new medicines.”