Australians are waiting an average of 466 days for medicines to become affordable and accessible on the PBS.
“I feel incredibly lucky. The treatment I’m on is holding my aggressive cancer at bay beautifully.”
Rob, Living with Lung Cancer
Rob’s story: Living with lung cancer
Your health shouldn’t come down to luck. But, thankfully, Rob was, as he puts it, “extremely lucky”.
Rob was a self-employed truck driver who developed a bad cough, felt incredibly tired and lost a lot of weight. When he took these symptoms to a doctor he was initially sent home with an inhaler.
Thankfully, Rob persisted.
After an X-ray he received a phone call ordering him to the nearest hospital as soon as possible.
There, they drained about two litres of fluid from his lungs and, from that fluid, identified stage four lung cancer.
“It brings you down to earth. You realise, you’re mortal. Time’s short. You’re not going to go on forever.”
Further tests (in October 2022) identified that the cancer was very aggressive and had spread, with multiple nodules and disease in his left lung, as well as lymph nodes throughout the middle of the chest, up into the neck and into his left armpit.
Rob started with an initial dose of chemo but was badly knocked around by the steroids that were required alongside the chemo.
Rob’s specialist, Dr Ben McGuigan explains that there are around 40 different types of lung cancers and there are a range of individual treatments.
Dr McGuigan undertook a biopsy of the lymph node in Rob’s neck and identified a specific mutation that could be treated by a specific medicine. That medicine costs just over $9,000 a month, making it next to impossible to afford under normal circumstances.
In an extraordinary stroke of luck for Rob, that specific medication was listed on the PBS within a week of his shell shocking diagnosis.
Thanks to the PBS, Rob has been accessing this medicine for just $7.70 a month.
Rob has now been on this targeted therapy for more than three years. He can access the treatment at his home and is not experiencing the debilitating side effects he has previously, because the treatment does not impact the whole body.
As Dr McGuigan said, “These treatments are often better tolerated and have fewer side effects because they have less of an impact on the normal tissues of the body”.
Dr McGuigan strongly encourages lung cancer patients to check with their doctors on whether or not their tumour has been tested for genetic mutations. If they detect a specific gene that is causing the cancer to grow, then they may be able to identify a specific, targeted treatment to block that mutation.
Rob’s story is one that celebrates the advancement in science, medicines and the support that can be provided by the PBS.
Sadly not all medications are so readily available on the PBS. As Dr McGuigan says, “Having a treatment on the PBS can completely change the lives of our patients. Sometimes we do identify a mutation but there is no way of accessing that treatment. Often that is very heartbreaking, knowing there may be a treatment that would benefit our patient but not being able to access it can really impact both us and the patient.”
Rob knows he is lucky. He also knows the enormous value of the PBS because he is on a life changing and saving medicine that he would not have been able to access otherwise.
“It’s kept me really good. It’s a bonus. It’s a lot. Because, I may not have been here - it is a fairly aggressive cancer I have got, but it’s holding it at bay - beautifully!”
Access to life-saving medicine should not come down to luck, which is why Australia needs a stronger PBS.
Today, Rob says “I feel a bit guilty, because I’m so well.”
Rob’s tests confirm that he is doing very well. His blood tests have normalised, there has been no effect on his liver function, his kidney function or his blood counts and his tumour has shrunk significantly. These excellent results have been maintained in a series of tests over a number of years.
As his doctor says, “Now, the left lung looks, essentially, normal. A lot of the other lymph nodes and other changes have all resolved.”
“Rob’s story highlights the urgency of a Stronger PBS. It is always so wonderful to hear about patients, like Rob, who are experiencing the profound benefits of medical and scientific advancements. We want lung cancer patients to benefit from these new medicines as quickly as possible. They shouldn’t have to draw on their superannuation or sell their house to access the medicines that might save their lives. We need a stronger PBS that is faster, fairer and fit for the future.”
Mark Brooke, CEO, Lung Foundation Australia
“Sometimes we do identify a mutation but there is no way of accessing that treatment. Often that is very heartbreaking, knowing there may be a treatment that would benefit our patient but not being able to access it can really impact both us and the patient.”
Dr Ben McGuigan, Medical Oncologist