WHEN David and Jennifer Webster’s son Matthew was
diagnosed with a rare cancer, they didn’t think twice about spending their life
savings, cashing in their superannuation and mortgaging the family home to get
the treatment he needed.
all, broke is better than heartbroken.
in 2014, Matthew was a 24-year-old, well-paid engineer working in Santiago,
Chile when a scan revealed a mass compressing his spinal cord. He was diagnosed
with angiomatoid fibrous histiocytoma, or AFH, a soft tissue tumour that had
spread throughout his body.
endured numerous cycles of radiotherapy and chemotherapy that failed but his
parents found a German clinic that specialised in immunotherapy.
“If we didn’t take him to Germany, he would have
died,” Mrs Webster, 56, said.
“We’d had to mortgage the house, you do what you have
The family estimate it has cost them $800,000, taking
in Matt and David’s lost wages.
immunotherapy is working but it is expensive. They no longer have to travel to
Germany as the charity Rare Cancers Australia helped to get the drug imported
but it still costs $6000 a dose and Matt needs five a year.
parents have sheltered me from the exact cost, but I know it’s been hundreds of
thousands of dollars, but having that treatment has kept me alive,” said Matt,
who has recently returned to work three days a week.
will have to continue the treatment indefinitely to keep the tumours at bay.
last thing I want is the tumours to start growing again,” he said.
Kate Vines, from Rare Cancers Australia, herself a
rare cancer survivor, has witnessed patients selling their homes and
crowd-funding to access medications.
Part of the problem is that some drugs that are
subsidised on the PBS for certain cancers are full-priced for different
Candi, 40, found herself in a financially devastating vice when she was
diagnosed with a rare form of uterine cancer.
the drug crizotinib cost her $7500 a month.
had lung cancer ... this drug would cost $38.50 per month,” she said.
Rare Cancers has now managed to get Ms Candi access
via the drug company on a compassionate basis.
Ms Vines said if patients cannot
afford treatment, they die.
“Yes, that’s the sad fact. One
man from Mudgee chose not to continue treatment because he did not want to
leave his wife penniless. He died,” Ms Vines said.
Social Worker Kim Hobbs, from
Sydney’s Westmead Hospital said she saw an increasing trend in patients
crowd-funding to cope with the costs of cancer.
“We are seeing patients struggle to pay
for their recommended treatments, other patients are using
crowd-funding platforms or their life savings to buy treatments that aren’t
approved in Australia or may not be genuine. In other cases we have individuals
who can’t afford new expensive cancer drugs that might benefit them. Making
decisions about these issues is a constant ethical dilemma for those working in
cancer care,” Ms Hobbs said.
Cancers has lobbied the federal government to change the criteria of the PBAC
and chair Professor Andrew Wilson is looking at access issues.
more information, go to: www.rarecancers.org.au
This article was originally published on The Daily Telegraph. You can read the original article here.