By Rebecca Baillie
At the age of 36, Danielle Tindle has been given an ultimatum — your money or your life.
A decade after surviving Hodgkin’s lymphoma, Dr Tindle is critically ill with another rare cancer.
But this time, she is being forced to pay thousands of dollars for potentially life-saving drugs which are available at minimal cost to other patients under the Pharmaceutical Benefits Scheme (PBS).
When Dr Tindle gets her immunotherapy for cancer every two weeks, it costs her nearly $5,000 a shot.
In the private hospital cubicle next to her could be a melanoma patient who is paying just $6.20 per treatment.
The discrepancy is due to drug listing requirements for the PBS.
“[The melanoma patient] is receiving it at a PBS subsidised rate, while I’m paying thousands of dollars,” Dr Tindle told Australian Story.
“There’s no-one that could look me in the eye, from any level of government, or even the drug companies, and say that’s a fair situation. Something needs to change.”
Rare Cancers Australia Chief Executive Richard Vines said: “There’s a lot of people out there who are very surprised when they get diagnosed with a rare cancer, that what they thought was a good, safe health system which provided drugs for people, just doesn’t.
“Nobody thinks it’s fair. It’s so frustrating.
“The [drugs] are sitting on the shelf, the Government’s OK’d them for one type of cancer, and not for the other.”
Australian Story featured Dr Tindle in 2005 after she survived Hodgkin’s lymphoma.
Ultimately, her life was saved by her father’s own groundbreaking stem-cell research.
Since then, she has advocated for improved services and care for other young cancer patients, and become a world leader in the field.
“Danielle is someone who has fought really hard to make a difference to people like me, and to future adolescent and young adult patients,” said Jasmine Gailer, a former cancer patient and founder of cancer support charity, Scar Stories.
New cancer caused by toxic cancer treatment, father says
Midway through her PhD, titled “Creating Meaning: The cancer survivorship experiences of young adults in Australia, England and the United States,” Dr Tindle was told she had cancer again.
“It wasn’t a relapse of her Hodgkin’s lymphoma, it was a new tumour altogether — a neuroendocrine carcinoma,” Professor Robert Tindle, Danielle’s father, said.
“That she’s got it is almost entirely the result of the draconian treatment she had 12 years ago for Hodgkin’s lymphoma,” the retired Professor in Immunology believes.
Some doctors support this theory that Dr Tindle’s new cancer may have been caused by the toxic treatment she received in her early 20s.