herald

Monday 29 May 2017

CF patients' lives to be 'transformed' as drugs are approved

Jillian McNulty
Jillian McNulty
Simon Harris welcomed the news

Cystic fibrosis campaigner Jillian McNulty says she and hundreds of other CF patients' lives will be "transformed" after a deal was struck giving them access to ground-breaking drugs from next month.

The young Longford woman has spent close to three years fighting to have the Health Service Executive (HSE) make the cystic fibrosis drugs Orkambi and Kalydeco available to approximately 600 Irish CF patients.

The original price sought by the drugs' manufacturer, Vertex Pharmaceuticals, was too high to make access to the drug feasible.

It reportedly would have cost the State approximately €160,000 per patient per year to pay for Orkambi, which treats the underlying cause of the debilitating lung condition.

However, after Health Minister Simon Harris yesterday announced that the drugs should now be available by May 1, Ms McNulty said the lives of CF patients will be vastly improved.

"I hope it will transform the lives of other people with CF the way it has transformed mine," she said.

Ms McNulty has been taking Orkambi for the past four years as part of a drug trial.

Since then, she has gone from having to spend every few weeks in hospital due to frequent infections and complications from the disease, to leading a relatively normal life.

"I no longer have to live my life in a hospital bed," she said.

Although she still fears every cough and sneeze from the public, which forces her to wear a mask to prevent infection that could send her back to hospital, she said the drug has given her a new lease of life.

"I don't need to have a nap every day anymore," she said.

The breakthrough also means she can stop campaigning and "just relax and get on with my life".

Ms McNulty sent a letter to more than 30 senators and TDs urging them to fund the drug, which allowed her to breathe properly for the first time in her life.

Tireless

She said her phone was "hopping" yesterday as delighted CF patients and their families welcomed the news that the drugs should be available soon.

Cystic Fibrosis Ireland last night welcomed the news and thanked campaigners for their tireless efforts to make the drugs available here.

"Cystic Fibrosis Ireland pays tribute to all in the CF community who have spoken out so bravely in favour of Orkambi and Kalydeco in recent months, in particular Jillian McNulty, the Whitmarsh family and many others also," a spokesman said.

Meanwhile, Mr Harris confirmed that the HSE and Vertex are working to finalise the contractual arrangements and complete approval processes.

"I want to recognise the work the HSE has put into these negotiations over a long period and I thank them for that," he said.

"I also want to especially acknowledge that this has been an extraordinarily difficult time for CF patients, their families and friends as they have been waiting for this process to conclude."

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