I discovered I had gastrointestinal stromal tumours [GIST] when I was 18. At the time I had over 50 seedings of tumours in my small bowel. They told me I had a prognosis of 12 months, with no treatment options and no cure. They sent me home and said I should sit back and wait for medical research to provide me with some options. I was completely shocked and felt incredibly fearful, confused and alone. That was the beginning of my race against time.
For the next 15 years we managed to hold the progression of the disease through clinical trials, surgery, and emerging treatments. I wasn’t eligible for any of the support programs at the time, so it was extremely isolating. It wasn’t until 20 years after my diagnosis that I actually met another person face to face with the same disease.
A few years later at CanForum I met a young woman in her 20s who had just been diagnosed with GIST. She was overwhelmed and terrified. It took me straight back to how I felt when I was first diagnosed at 18; I could see her grappling with the same stress and uncertainty. I ended up meeting six other GIST patients that day who were all at the beginning of their journeys too. For me it was a pivotal moment – I wanted to support them in any way I could and make sure they didn’t feel the same helplessness and isolation that I had.
The first thing I did after the forum was make medical folders for each of them, to help them manage their appointments and feel a little bit more empowered within the medical system. There was a place for different paperwork, and suggested questions to ask their oncologists. It was something tangible and practical I could do to help them feel a little bit more confident and less isolated. We stayed connected online where I ended up building personal connections with more and more patients. I think I ended up sending around 50 folders out to new patients across the country.
My advocacy work really started from there. I was growing increasingly frustrated at the challenges and inequities that rare cancer patients faced regarding support and access to affordable treatment. It had been 10 years since the GIST community had a treatment approved. There are effective treatments out there, but because of the nature of them being rare, it’s nearly impossible to get them funded.
I had to crowdfund $100,000 for my next treatment and would need to worry about doing this every time my disease progressed. I decided I had to try and change the system so that my family and other GIST families didn’t have to sit around their dining tables in despair, worrying how they could possibly raise this huge amount of money year after year just to stay alive.
I’m a primary school teacher, so I’m much more comfortable standing in front of a kindergarten class than trying to lobby the government for treatments. I had absolutely no idea how the medical system worked beyond my experience as a patient, and no idea how the drug approval system worked. But I had my experience as a patient and sheer determination to improve access to treatments and to make life it easier for newly diagnosed patients.
I joined the Rare Cancers Australia (RCA) GIST Support Group, where we really started to unite as a group behind these issues. Our next treatment failed to make it onto the PBS again; a disappointment we’d experienced a few times now in the last 10 years. At that point I leaned on the support and guidance of RCA to come up with a plan to finally get this treatment funded.
First, I reached out to all the patients I had met over the last eight years and asked them if they’d be comfortable writing a submission to the PBAC for the approval of our treatment, Qinlock. Within 72 hours I had a significant number of patients pour their heart out; sharing their GIST story, their fear of running out of treatment, and the pain of living with a rare cancer with limited treatment options. Collectively we had about 10,000 words and 26 patient submissions to put to the Pharmaceutical Benefits Advisory Committee (PBAC).
Next, we asked patients, their families and friends to write to Members of Parliament (MPs) from all parties at all levels – whoever would listen. We met with over 20 MPs to discuss the inequities we face, and I managed to get a meeting with the Shadow Health Minister. Then one small media interview led to a national interview, and the momentum just grew from there.
We discovered that together we could do so much, and with a united plan our voices could be heard. Even though we were all individuals with a rare cancer, collectively we were a force to be reckoned with. This is such a contrast to how most people initially feel with a rare cancer. You start out feeling so isolated, helpless and confused, but then when you come together you feel supported and united; you are no longer alone.
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The patient voice matters... they can and should be heard, and they should keep talking until someone listens.
Sarah
With the backing and guidance of RCA we were able to advocate for change. The drug that we were told would cost $10,000 - $15,000 per month indefinitely, is now listed on the PBS and costs $41.05 per month. There are six patients in Australia who are currently taking it, so they got to move to their next treatment rather than to palliative care. This isn’t something that has an impact in a generation’s time; it had an impact on people’s lives the very next day. These people are not well enough to fight, they are in absolute survival mode and need all the help and support they can get. Knowing it made a difference to their lives instantly made all the hard work worthwhile.
I am determined to keep fighting until there is equal access to treatments for all rare cancer patients. So we don’t have to fundraise and stress about whether we can pay for our next treatment. So if you’re diagnosed with a rare cancer there doesn’t have to be a discussion about if you can afford the treatment; it’s a discussion about the side effects of the treatment. So patients can focus on their own health and not be fearful of their finances while they’re dealing with a new disease.
Something else very important to me is supporting new GIST patients so they understand more about the medical system, including clinical trials and medical research. I try to help them understand that although they may feel desperately helpless at first, they are not powerless in the system. They have a voice, they can and should be heard, and they should keep talking until someone listens. Eventually people will listen, and your sense of control and quality of care will improve because you can be more of an equal partner in the conversation. You can take an active role rather than a passive role in your own health, and in your own experience with the disease.
On a personal level, once I realised I had a voice in meetings with my oncologists and that I was being heard, I felt so much more empowered and in control of my disease. That sense of control helped me fight the disease physically, and it’s had a profound impact on my ability to cope with the disease emotionally. As a patient, being at the centre of decision making has been essential and empowering. It has had a profoundly positive impact on living with a rare cancer for 25 years.
If this experience has taught me anything, it’s that with determination, support and a clear sense of purpose, patients can unite to affect real change at all levels. I am one person with one voice, who didn’t know anything about the medical system when I was first diagnosed. This month, I presented at a Global GIST Conference to patients from over 65 countries about our Australian success story of Qinlock’s funding approval. The patient voice matters.