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Friday 22 September 2017

CF campaigners 'worn out begging for their lives', says protest mum

Protester Hazel Robinson who camped outside the Dail
Protester Hazel Robinson who camped outside the Dail

A mother-of-three who camped outside the Dail in a bid to get a life-saving drug for patients like her daughter, who has cystic fibrosis (CF), is relieved other parents will not have to go to such extremes to get the medication.

Hazel Robinson (32), from Drumlish, Co Longford, said she was "delighted" that Health Minister Simon Harris was able to secure an agreement with pharmaceutical giant Vertex this week that will give approximately 600 CF patients access to life-saving drugs Orkambi and Kalydeco.

The HSE had denied CF patients access to the drugs due to the costs - reportedly about €160,000 per patient each year.

"I went up there with a wing and hope and I walked away from the Dail so happy," she said of the agreement in principle announced by the Health Minister on Tuesday.

Angry

But she said families with loved ones suffering from the debilitating lung condition and other life-threatening illnesses should not have to camp outside in order to beg the Government to intervene.

"I was very angry with the Government for letting it get to that stage," Ms Robinson said.

She slept in a pop-up tent outside Leinster House for three nights in a bid to get "someone to talk to me" after her daughter Gypsy Ann (14) began coughing up blood.

Although the schoolgirl was given the drug on compassionate grounds, she said "it shouldn't have gotten to that stage".

"I couldn't bear to see any other child go through what we did," she said.

"It's great news and I'm ­absolutely thrilled for the CF family, who have become ­campaigners overnight.

"But the CF family is completely worn out begging for their lives."

While the decision is welcome news to the hundreds of CF patients in Ireland - which has the highest per capita rate of the illness in the world - Ms Robinson said the Government should heed the lesson from this process.

Welcome

Meanwhile, Cystic Fibrosis ­Ireland (CFI) CEO Philip Watt said the news was especially welcome, as it coincided with CFI's annual fundraising day today.

He said the deal "comes after a long and often challenging campaign by people with cystic fibrosis and their families to achieve a positive outcome".

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