Dialog Box


Family spends $800K life saving to save their son

3 Dec 2017 at 12:00 AM

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.

Matthew Webster, pictured with his mum in Germany, Jennifer, was diagnosed with a rare form of cancer.After all, broke is better than heartbroken.

Back 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.

He 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 to do.”

Luckily the Webster family doesn’t have to travel to Germany for Matthew’s treatment as an Aussie charity can now import the drug but it still costs $6000 a dose.The family estimate it has cost them $800,000, taking in Matt and David’s lost wages.

The 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.

“My 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.

He will have to continue the treatment indefinitely to keep the tumours at bay.

“The 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 cancers.

Adreanna Candi, 40, found herself in a financially devastating vice when she was diagnosed with a rare form of uterine cancer.

Cancer survivor Andreanna Candi found herself in a similar situation after she was diagnosed with uterine cancerUsing the drug crizotinib cost her $7500 a month.

“If I 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.

Rare Cancers has lobbied the federal government to change the criteria of the PBAC and chair Professor Andrew Wilson is looking at access issues.

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This article was originally published on The Daily Telegraph. You can read the original article here.

Category: Rare Cancers in the News
Tags: AFH, angiomatoid fibrous histiocytoma, Australia, cancer, chemotherapy, cost, crizotinib, Germany, immunotherapy, mortgage, radiotherapy, rare cancer, superannuation, treatment, uterine cancer,