“Shocked and overwhelmed” is how Sarah McGoram describes feeling when she found out she was being awarded a Medal of the Order of Australia.
Sarah was diagnosed with Gastro Intestinal Stromal Tumors (GIST) at 18 years old, and has lived with the rare cancerA disease where abnormal cells split without control and spread to other nearby body tissue and/or organs. Cancer cells can also spread to other parts of the body through the bloodstream and lymph systems. for her entire adult life. It wasn’t until 20 years after her diagnosisUsing medical test results, identify and name a disease and/or condition. that she met another person face to face with the same disease.
“I could see other people grappling with the same stress and uncertainty I had when I was first diagnosed. 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.”
Sarah grew increasingly frustrated at the challenges and inequities that rare cancer patients faced regarding support and access to affordable treatment. Her advocacy includes community awareness of clinical trials and medical research, individual patient support for GIST patients, working with charitable groups, and lobbying groups and the government to get PBS funding for treatments for all GIST patients in Australia.
Due to Sarah’s advocacy, patients have been able to access to further treatments that have kept them alive and given more time with loved ones.
“I’m deeply motivated to make the cancer journeyWhat a person experiences/lives from the time they think they have cancer. easier for patients with GIST who are trying to navigate our disease with limited information and treatment options. I am motivated to help bring more treatments into Australia to extend our lives, as well as improving the level of support for GIST and rare cancer patients around the country.”
“We are a group of patients that fall through the cracks often: I try and help new patients navigate those cracks and reduce the pain and distress that living with a rare cancer can bring. I feel so grateful to be able to support and guide them towards treatment options, clinical trials, research, cancer care nurses and support groups like Rare Cancers Australia.”
In accepting her award, Sarah made special mention of the GIST community in Australia.
“They are a small but determined and courageous group of men and women. They have trusted me with their deeply personal stories and calls for help as we try to advocate for more funded treatments for our cancer.”
All the staff at Rare Cancers Australia wish to congratulate Sarah on such a well-deserved honour and thank her for the tireless effort to improve the lives of Australians living with rare cancer.