Friday 28 October 2016

Lives 'at risk' if approval for CF wonder-drug is delayed

CF sufferer Jillian McNulty
CF sufferer Jillian McNulty

Patients will die unless a life-saving drug is sanctioned by Irish authorities for immediate use in Ireland, according to cystic fibrosis sufferer Jillian McNulty.

Orkambi is already in use in the US and was approved by the European medicines agency last month. The drug has been hailed for saving and transforming the lives of a significant percentage of cystic fibrosis (CF) lung disease patients.

"I am pleading for swift action to approve its use in Ireland. The health of many with CF is failing and they are now in dire need of Orkambi," said Ms McNulty (39).

She said NCPE Ireland, the National Centre for Pharmacoeconomics, which decides on the cost-effectiveness of new drugs, took more than a year to approve an earlier CF drug. Some people with CF who could benefit from the drug will not survive a year, she said.

Longford-based McNulty said a cost of more than €200,000 a year per patient was far less than providing months of hospital care for each patient.

She has received the drug on a trial basis and it transformed her life.

"I used to be in hospital for up to nine months each year, but with the drug I haven't needed a hospital for the past 11 months," she said.

Ms McNulty said her own health had been "in sharp decline" until she was accepted to be part of a trial for the new drug. It led to an enormous improvement in her condition, she added.

"There is no argument that this new drug is worth the money. The alternative is months getting treatment in hospital, undergoing procedures and getting very expensive antibiotic IV treatment.

"I appeal to the authorities not to put a price tag on my life or on the lives of other people with cystic fibrosis."

Ms McNulty said she wanted to meet with Health Minister Leo Varadkar to urge him to fast-track approval for the drug.

She said the drug could make a great, positive difference to around half of Ireland's 1,200 CF sufferers.


She said it would be "crazy" if the process of allowing it to be dispensed to Irish patients were to take many months or even a year.

"I've had countless friends with CF who have died. I have an awful lot of Facebook friends around the world who have CF and up to 50 of them, many aged in their 20s, have died in the past month," she said.

She supported Dublin Fianna Fail Senator Darragh O'Brien in urging the HSE and Minister Varadkar to fast-track its use in Ireland.

"We have been very slow to give effect in Ireland to EU (drug) approvals," he said.

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