Row over wonder drug raises tragic memories
THE cost of a cystic fibrosis treatment should be reduced to make a $300,000 drug more accessible, a man who lost his wife to the illness has said.
The drug Kalydeco, produced by American company Vertex, will be covered under the Pharmaceutical Benefits Scheme, it was announced on Friday but the Federal Government is still negotiating a lower price.
Lynda Vatskalis died from the disease in 1988, aged 31, after suffering her whole life with the illness.
Her husband Kon Vatskalis, of Nightcliff, said it was great news the drug had been developed and the Federal Government would subsidise the treatment of about 200 Australian sufferers.
‘‘If you had told me 20 years ago, I’d have said that was science fiction,’’ the Labor Member for Casuarina said.
‘‘My wish is the company will seriously consider the effect on people’s lives and seriously consider lowering the price.
‘‘(Vertex) got a $75 million grant from Cystic Fibrosis America and now they want to charge an arm and a leg for this drug.
‘‘The government should seriously negotiate.’’
Mr Vatskalis estimated there were about half a dozen cystic fibrosis sufferers in the Territory. He said most left because there was no capacity for treatment.
He said his late wife’s treatment was horrific.
You just can’t walk away. For better or for worse, they say
‘‘ She went into hospital and never came out,’’ the 56-year-old former NT health minister said.
‘‘ The grieving before death.
‘‘She made friends in hospital who had cystic fibrosis and the sad thing is you see friends dying and you know you are next.’’
The pair, both then aged 24, met in Athens in 1981 — Mr Vatskalis lived in the city and she was on holiday from Perth. She was due to return home 24 hours later.
‘‘My first question was, ‘Do you have bad cold?’, and she said, ‘I have cystic fibrosis’,’’ Mr Vatskalis said. ‘‘I loved her. ‘‘How do you know tomorrow you may have someone and she has breast cancer. Would you run away?
‘‘People have problems and you just can’t walk away. For better or for worse, they say.’’ The pair married in 1982. ‘‘Her dream was to live to 30,’’ he said.
Ms Vatskalis’s family has funded a scholarship in her name to help law students with disabilities attend the University of Western Australia. Her younger brother John also died from the disease as a child.
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