Rare Cancers Australia shared on LinkedIn:
“Rare champions, Caitlin Delaney and Sarah McGoram, don’t want praise for their resilience. And even in Caitlin’s final days, they want change.
‘We have cancer. Our families should not be left bankrupt as well as heartbroken.’
Crowdfunding bought Caitlin nine more years with her family, but as she shares her last words, she is more determined than ever that the inequity must change.
People cannot look away because it’s rare.
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Written by patient advocates Caitlin Delaney and Sarah McGoram, this open letter addresses the severe inequities faced by rare cancer patients in Australia’s healthcare system.
‘We have rare, aggressive cancers. We are mums, wives and Australians. And we are angry.’
While Australia boasts one of the world’s best healthcare systems, 42,000 people are diagnosed with a rare or less common cancer each year, translating to one diagnosis every 12 minutes and one death every 30 minutes. These patients face diagnostic delays, fewer clinical trials, limited research funding, and longer waits for life-saving drugs.
Medicines not covered by government subsidies cost hundreds of thousands of dollars. Patients often sit next to others receiving the exact same drug for $25 because it is subsidized for common cancers, while they must pay thousands per dose out-of-pocket or rely on public crowdfunding.
Breakthroughs in precision medicine and genomics mean nothing if patients cannot access them. The authors demand that the Australian Government prioritize equitable, faster access to non-subsidized therapies and clinical trials, stressing that access is the real miracle drug and that a family’s financial status should never determine a patient’s survival.
Sarah McGoram lives in Canberra with her husband and son. Diagnosed at age 18 with a rare Gastrointestinal Stromal Tumor (GIST) and given just 12 months to live, Sarah has lived with incurable cancer for 30 years. Despite undergoing countless surgeries, scans, and infusions, she has been eligible for government-funded treatments for only a fraction of that time. She serves as President of the Patient Voice Initiative.
Caitlin Delaney lives in Sydney with her husband and two daughters. Diagnosed over 9 years ago at age 39 with stage 4 metastatic clear cell ovarian cancer, a rare and aggressive subtype, Caitlin has spent approximately $250,000 out-of-pocket on treatments. She recently had to crowdfund $10,000 per dose for a drug provided for free to breast cancer patients. She consults for cancer organizations, mentors patients globally, and advocates with Rare Cancers Australia.
You can also read: OCRF and News Corp Australia Launch “Over It” Campaign to Close the Ovarian Cancer Survival Gap
