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The best grandfather in the world

 May 30 2013

Most grandparents would not be able to put a value on their grandchild's life, but Ken Parker has had to.

Proof of his grandfatherly love is the incredible $300,000 a year he is spending on a breakthrough medicine that is keeping his granddaughter out of hospital in the hope it might extend her life.

Alex Parker, 24, suffers from cystic fibrosis, a disease that clogs the body's organs with thick, sticky mucus and leaves sufferers with a life expectancy of 37.

In 2011, Alex was underweight, sweated salt, had a lung capacity 40 per cent below normal and was admitted to hospital five times.

A new drug, Kalydeco, has transformed her life, allowing her to breathe better, sleep and work, but it is simply unaffordable for most of the 200 Australians who could benefit from it.

"I don't want to be put on a pedestal because of the amount of money," Mr Parker says.

"We've been motor dealers all our lives, we've retired, we invested a bit in property and we can afford it," he says.

Sky Racing and Tabcorp are raising money for Cystic Fibrosis Australia from May until 3 June 2013. Please donate at www.skyracing.tv/cf upload an image and you could win an iPad Mini.

Alex Parker lectures in photography at the The Australian Academy of Design in Melbourne and shoots photos for national advertising campaigns but was in despair before she stated the drug.

"Everything was affected, my social life, my relationships. I was staring down the barrel at 22 and thinking I don't know if I can do everything I want to do before I die," she said.

"It's pretty confronting to think that at 24 you are more than halfway through your life. It's strange to live on a timeline," she said.

Within two weeks of starting Kalydeco, Alex says, her life "completely changed".

Underweight for years, she put on five kilos, for the first time she could sleep lying down and without coughing, she had energy and the sodium chloride in her sweat fell by 75 per cent to a normal level.

Royal Children's Hospital cystic fibrosis expert Professor Sarath Ranganathan who supervised seven children taking part in a clinical trial of the drug said it produced a "dramatic" response.

While it didn't cure the disease, "it is the first drug that is disease modifying".

Experts were assuming it would increase the life expectancy of those who used it because of the dramatic improvements in lung function it produced, he said.

Around 3000 Australians suffer from cystic fibrosis, but only 200 of them have the G551D gene mutation that means they can benefit from Kalydeco.

Forty patients are receiving it for free, some under a clinical trial, others under a compassionate access program run by the pharmaceutical company that makes it.

Peter Nicol, whose ten-year-old son Zane would benefit from the drug, said that "it's frustrating to know there is something out there but there is not a lot of people who have access to $300,000 a year".

In July, the experts running the nation's medicine subsidy scheme will decide whether taxpayers should fund the medicine.

Ken Parker says he can't see the point where he would stop paying for the drug, but he hopes it does attract a government subsidy.

"If it gets down to a lobbying situation with the government, the motor dealer in me would say it's a dead set good investment for the government," he says.

Although the drug costs $300,000 a year, it means fewer people will need expensive lung transplants "and those organs would end up going to other people," he said.

Read more.



By Sue Dunlevy - news.com.au

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