Today is GIST Awareness Day. It also marks Sarah McGoram’s 25th year of living with Gastro-Intestinal Stromal Tumours (GIST). Sarah’s story is one of inspiration and determination having fought to survive since the age of 18, when she was diagnosed with GIST. At the time, she was only given 12 months to live but has since defied those odds.
This quarter of a century has not come without its hardships, battles and glimpses of hope. However, Sarah is about to have to fight again for her chance at survival, as she desperately seeks government funding for the next drug that will keep her alive.
“It hasn’t been an easy ride, as I have had cancer my entire adult life. I’ve spent hundreds of days in hospital, 15 years on drug therapy, thousands of days on the couch or in bed, endless surgeries and procedures, and over 50 blood transfusions, but thanks to medical research I am still alive,” Sarah said.
“With every progression of my disease, a new drug therapy has been developed, clinical trial funded, or surgical technique evolved giving me the chance to live a little bit longer. I am riding the wave of medical research and winning.”
Sarah’s current treatment Regorafanib, has stopped the progression of her disease for the past six years, but will gradually become ineffective and stop working. This means that she will have to move to the next targeted therapy in order to gain more time with her teenage son George, husband Tom and loved ones.
The prescription medicine, Qinlock, is likely to be her next treatment but is currently not subsidised by the government on the Pharmaceutical Benefits Scheme (PBS), meaning that one day soon Sarah’s family will have to find $10,000 a month to keep her alive.
“GIST patients around Australia are hoping Qinlock will be funded by the government at the July PBAC [Pharmaceutical Benefits Advisory Committee] meeting and funded by the PBS in the coming months. This will provide all GIST patients access to another line of affordable treatment and buy them more time to fight their cancer and live full and meaningful lives. Without access to affordable treatments, GIST patients have limited options.”
The evolution of technology during that time has brought with it advancements in medical research that has intermittently delivered treatment options to Sarah, feeling grateful to be a real time benefactor of technology and medical research. These advancements have also seen Sarah participate in AGITG-GI Cancer Institute clinical trials, including the EORTC and REGISTER study.
“I am alive because of targeted therapies that have evolved. I am alive because of the clinical trials I participated in. I am alive because of the drug therapies that I have had access to both PBS funded and compassionate access funded treatments and I am alive – and still sane – thanks to my family and friends.”
To raise awareness of the need for Qinlock to be made available on the PBS, Sarah recently appeared on the 2GB Drive with Jim Wilson radio show to continue to advocate for access, not only for herself, but GIST patients around the country.
“Unfortunately, many of the treatments for GIST and other rare cancers are not yet funded by the PBS. Of the 25 years of my disease, I have only been eligible for PBS approved treatment for six years: the remaining years are dependent on fighting for access to drugs through compassionate access programs, clinical trials or even personal fundraising to meet the cost.”
On this GIST Awareness Day 2021, it is Sarah’s hope that GIST patients in the future will have equal access to treatments, equal funding for research and access to clinical trials to find ways to live longer and healthier lives.
“I hope the next generation of GIST patients will never have to walk out of an oncology ward wondering if they can afford to pay for cancer treatment so they can live longer. I hope the next generation of cancer patients will benefit from the emerging technologies and experience cancer no longer as a death sentence, but as a manageable condition with equal access to treatment.”