Wednesday 18 January 2017

Family of CF victim says money was put ahead of saving her

Greg Harkin

Published 07/03/2016 | 02:30

Aisling Golden holds Mylah. The dog belonged to her sister Gráinne, who died of cystic fibrosis. Her home in Sligo has become a shrine to Gráinne’s memory. Photo: James Connolly
Aisling Golden holds Mylah. The dog belonged to her sister Gráinne, who died of cystic fibrosis. Her home in Sligo has become a shrine to Gráinne’s memory. Photo: James Connolly
Gráinne Golden with her sister Aisling, when the pair met Beyonce last year. Photo: James Connolly

The family of a 21-year-old woman who died from cystic fibrosis has vowed to campaign in her memory for a new drug to treat those with the illness.

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Gráinne Golden, from Sligo town, passed away at St Vincent's Hospital in Dublin a fortnight ago, just days after slamming Health Minister Leo Varadkar, the HSE and pharmaceutical companies.

She was also one of 35,000 people who signed an online petition, begging the HSE to negotiate a deal for use of the 'game-changing' drug Orkambi.

Four weeks before she died, Gráinne shared a link to the petition on her Facebook page and wrote: "We badly need this drug to be accepted. We are losing too many good people. I have cystic fibrosis myself and this drug can change my life.

"We all need this drug! To put a price on life is so unfair! Shame on Irish Government! And shame on Leo Varadkar."

Gráinne's mother Terri, her sister Aisling and her boyfriend Rhys have vowed to campaign for the HSE to approve the drug - and for Joe Brolly's OptForLife organ donation campaign.

"She took away her oxygen mask to say her last words to us," said 23-year-old Aisling.

"That was typical of her. She was a fighter and fought all of her life for others too.

"She said, 'It's time for me to go now.' I thought she was coming home again, like she always did when she went to hospital, but she didn't come home this time."

Terri said: "Her last words to me were, 'Mummy, I can't do this any more.' She had given her all.

"She never saw herself as a campaigner, but she was.

"She would Skype other young people with cystic fibrosis and give them advice. We have the highest rate of cystic fibrosis in the world.

"Orkambi treats the gene which causes it and gives sufferers a real chance of life. Gráinne was appalled at those who would deny her and others a chance at life."

Aisling said organ donation had to be part of the solution too.

"Joe Brolly was Gráinne's hero. We need an opt-out system for organ donation. So many lives could be changed."

Gráinne's boyfriend Rhys Carey said her death had left him traumatised.

"This drug could have added significantly to my Gráinne's life and more memories that we could have shared together," he said.

"It's a question of money over human life and it's disgusting. It makes me physically and mentally sick," he said, adding: "I no longer have my soulmate."

A HSE spokesman said: "Orkambi is being considered under the national medicines pricing and reimbursement assessment processes. As the process is still ongoing the HSE cannot discuss potential outcomes or comment further at this time."

Irish Independent

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