A Halls Head woman with incurable cancer is fighting for a change in Federal legislation after being forced to fork out $4500 every three weeks for immunotherapy treatment keeping her alive.
Halouma Pittock has paid more than $30,000, on treatment, medication and scans after the doctor found tumours covering her entire body in December 2017.
The mother-of-two said she was diagnosed with transitional cell cancer and underwent chemotherapy with no success.
“I was bed-ridden and could not move at all,” she said. “They couldn’t operate on me because I have too many tumours.”
With hope running out, an employee of Saint John of God Hospital gave Ms Pittock and her husband Shaun the option of starting the 50-year-old on immunotherapy treatment as part of a medical trial.
Ms Pittock said the treatment was originally used for melanoma and there was no evidence to suggest it would be succesful – but it made a “huge difference”.
“I probably would have been dead right now if it wasn’t for the immunotherapy,” she said.
“We haven’t had the scans yet so I can’t say what it has done in my body – but I am feeling so much better.”
When it’s life or death, you would think it would be covered.Halouma Pittock
However, the Pittocks say they have been forced into debt from the treatment.
Ms Pittock said she felt “terrified” when she found out the Pharmaceutical Benefits Scheme (PBS) did not cover the costs.
“The government will only pay for immunotherapy for four types of cancer...and mine doesn’t come under that,” she said.
“When it’s life or death, you would think it would be covered.
“There was no cancer in my family – which was one shock – but it’s a double shock to realise not everything is covered.
“In October I will have a pet scan to see the effects and after that there is a possibility I will have to stay on the treatment forever, or until new treatments come out or even a cure.”
The Australian government cannot list a new medicine on the PBS unless the PBAC has made a recommendation in favour of the listing.Federal Department of Health spokeswoman
Mr Pittock, who stopped working to become his wife’s full-time carer, said he did not like receiving handouts but the couple had run out of money.
“You would think she would be covered for treatment keeping her alive,” he said.
“We’re not the only people in this situation surely. We’ve borrowed so much money, and we’ve survived off donations.”
A Federal Department of Health spokeswoman said PBS currently provides subsidised access to imunotherapies for classical Hodgkin lymphoma, non-small cell lung cancer, kidney cancer, melanoma and head and neck cancer.
“Checkpoint inhibitors medicines are a new (recent) type of immunotherapy,” she said.
“Ms Pittock may be referring to these medicines to treat her transitional cell cancer, a condition also known as urothelial carcinoma.
“The Pharmaceutical Benefits Advisory Committee (PBAC) — an independent group of medical specialists, health economist and consumer nominees — advises the Australian government about PBS matters.
“The Australian government cannot list a new medicine on the PBS unless the PBAC has made a recommendation in favour of the listing.
“In the meantime, there may be alternative options for Ms Pittock and other patients to access Keytruda or other immunotherapies at a reduced cost outside of PBS arrangements.
“Additionally, the Australian government provides funds to the states and territories to assist with the costs of providing public hospital services, which can include assistance with the costs of medicines that patients are unable to afford.”
The spokeswoman said pharmaceutical companies may be willing to supply their product through a compassionate access program.
Visit the fundraising page here.