Though Qinlock (ripretinib) was approved for use by the TGA (Therapeutic Goods Administration) of Australia in July of 2020 as a 4th line treatment for adult patients with advanced GIST, patients who were eligible could not receive treatment because they would have faced paying full price for the costly drug. For those patients in need due to their present condition or concerned about future treatments if they experience progression, this delay in coverage affects patient access to lifesaving treatments. Australian GIST patients/advocates and medical professionals fought to change this.
On August 20, 2021, GIST advocate Sarah McGoram shared these results on social media:
We did it! The PBAC (Pharmaceutical Benefits Advisory) recommended funding of Qinlock on the PBS (Pharmaceutical Benefits Scheme ) for GIST.
Here’s the post in full:
We did it! Today is a life changing day for all people living with GIST in Australia. Moments ago the PBAC released their recommendations to fund Qinlock on the PBS for GIST patients. (There are a few steps left from the Dept of Health before doctors can actually write the script for Qinlock, but we hope that won’t take too long.) This is life changing in the truest sense of the words. I will have the chance to live longer, every GIST patient will have the chance to live longer.
Today’s recommendation means Australians living with GIST will have another treatment option on the PBS, gifting us the opportunity to live longer. Because of this decision, we won’t be faced with a decision to either: fundraise hundreds of thousands of dollars OR transitions to palliative care. We all have families, many have young families and some patients are still children. GIST treatments are not the traditional type of cancer treatment, they are targeted therapies, all developed since I was diagnosed in 1996. We live on the pointy end of medical research, but it is keeping us alive.
GIST patients are riding the wave of medical research. Qinlock’s approval will allow us to catch the next wave of treatment. We hope to ride that wave while future treatments in targeted therapies, genomics and immunotherapies are swirling around research labs and clinical trials. Continued funding for emerging treatments and clinical trials is essential in our survival and will allow all GIST patients (and rare cancer patients) time to live full, active and meaningful lives while our next treatment is discovered.
Today is a day to celebrate the news that we have another PBS funded treatment in our future. I would like to thank the incredible support from GIST patients around Australia, who trusted me with their submissions for Qinlock. They included family photos, stories of their families, their deeply personal desire to live longer and the pain and fear of running out of treatment options. In private conversations, they also spoke of the distress of having to beg and fight for access to affordable treatments for our disease (sadly a common experience for rare cancer patients).
The voices and stories of GIST patients were also carried and amplified by our families, friends, work colleagues, neighbours, school communities, Facebook groups and support groups – we all united and rallied and our voices were heard. We met with over 15 Members of Parliament across Australia, sent well over 50 letters to MPs, spoke with staffers, advisors, tv, radio and print media, social media and anyone who would listen. Our voices were heard! Our voices matter!
Thank you for your support. The hard work of many, means that people living with GIST have a greater chance of being with their families for longer and living longer.
We will all sleep easier tonight. A special thanks to my Tom & George, my family, friends and Rare Cancers Australia who have supported me so much this year.
Our future is brighter today.
– Sarah McGoram