A Double Diagnosis: The Fight for Equity in Rare Cancer Treatment
The Carosella family’s grief over the loss of their daughter, Jasmine, was tragically compounded just weeks later with a devastating diagnosis for Celestino, her father. Jasmine, 16, succumbed to rhabdomyosarcoma, a rare cancer affecting skeletal muscles, last december. A week later, Celestino received a terminal diagnosis of adrenocortical carcinoma, a cancer of the adrenal gland.
“She never, never once complained,” says Jasmine’s mother, Michelle Carosella, recalling her daughter’s resilience in the face of her illness. “She never said, why me? Why has this happened to me?”
Celestino’s diagnosis brought with it a financial burden highlighting a disparity in cancer treatment access.He requires immunotherapy every three weeks, costing $3,000 per treatment. This life-extending therapy is covered by Australia’s Pharmaceutical Benefits Scheme (PBS) for more common cancers like melanoma and lung cancer,but not for the rarer adrenocortical carcinoma. Moreover, due to the rarity of his condition, Celestino is limited to a single Medicare-subsidised diagnostic scan.
“To have to pay $1,000 every time to know where your cancer’s at, you know, that can’t be right,” Celestino stated.
rare Cancers Australia’s research, based on surveys of thousands of Australians, confirms that patients with rare or less common cancers often face unequal access to care. The organization advocates for expanding PBS coverage to include medications already approved for common cancers, where evidence supports their use in treating rarer forms.
“These medicines are already here and they are already being used in cancer therapies,” explains CEO Christine Cockburn. “There are a whole bunch of other cancers that will benefit when they come to the PBS and they will come, but they will come one at a time.”
The challenge, according to Professor rosalie Viney of the University of Technology Sydney and a former member of the Pharmaceutical Benefits Advisory Committee (PBAC), lies in demonstrating cost-effectiveness.”And the issue with rare cancers is that we’re talking about small numbers,” she explains. “So when there’s small numbers of people, it’s much harder to get the evidence quickly.”
The federal government has responded to a recent Senate inquiry, supporting most of its recommendations regarding equitable diagnosis and treatment for rare cancers. A further review, proposing faster and more affordable access to medicines, is also under consideration, as stated by Health Minister Mark Butler in a response to the ABC.
despite these developments, the Carosella family urges swift action. Driven by Jasmine’s wishes, Michelle and Celestino hope to ensure future patients with rhabdomyosarcoma, and other rare cancers, have the prospect for a full life.
“Jasmine was really adamant that she wanted children in the future that end up with rhabdomyosarcoma,” Michelle Carosella shared. “She wanted them to have the opportunity to live a long life. The life that she wanted to have lived.”