Cystic Fibrosis sufferer pleads for access to ‘groundbreaking’ drug

An Irish woman suffering from cystic fibrosis (CF) has called on the HSE and the Government to fund the Orkambi drug which is used to treat the underlying causes of the disease.

CF campaigner and fundraiser Jillian Mc Nulty has spoken of her dismay upon learning the HSE has ruled out funding for Orkambi.

Chief executive Tony O’Brien has said the HSE cannot afford to pay for the drug, which will reportedly cost €160,000 per patient per year.

In a letter posted to Mr O’Brien and the National Centre for Pharmacoeconomics (NCPE), Ms Mc Nulty described how her life transformed after she began taking Orkambi two years ago as part of a trial of the drug.

“Within a few months my body started changing, during my runs I could breathe deeper, it’s not something I can explain correctly because I don’t think I’ve ever known what it’s like to breathe properly,” Ms McNulty said in the letter which was also sent to over 30 senators and TDs.

Ms McNulty said her health was deteriorating before taking the drug and she relied on frequent naps to make it through the day. She was being admitted to hospital every four to five weeks.

As a keen runner, she pushed herself to keep active despite the exhaustion she experienced. "I would push myself beyond the limits I'm capable of, I don't want CF to define me," Ms Mc Nulty told The Irish Times. She said her health rapidly improved when she began taking the drug. "I had boundless energy, I was like a Duracell bunny."

When Ms McNulty finished her trial of the drug two weeks ago she immediately felt the symptoms of CF returning. “Within 24 hours my chest felt heavy again. I had so little energy, I was so breathless.”

She says access to Orkambi gives people with CF a new quality of life and they shouldn’t have to fight for it.

“This should be our right, we’re human beings, we’re not animals,” she said.

“Life is hard enough, it’s a horrible and unforgiving illness, people die way before their time.”

Orkambi will reportedly cost € 92 million each year - the equivalent of annual funding for Temple Street Children’s Hospital.

Cystic Fibrosis Ireland said 60 per cent of people with CF could benefit from the "groundbreaking" drug, which it said had the potential to lengthen lives, increase quality of life and delay the need for lung transplantation.

“The HSE appear to have acted as judge and jury on this drug before it has even gone through their own procedures and before a price is negotiated,” said Philip Watt, head of Cystic Fibrosis Ireland . “It has created fear among many in the CF population in Ireland and is highly insensitive to say the least.”