Aisling Golden, who lost her sister to cystic fibrosis last year.

Aisling Golden, who lost her sister to cystic fibrosis last year.

“SEVERAL CHILDREN HAVE died” waiting for the life-saving cystic fibrosis drug, Orkambi, according to Fianna Fáil’s Willie O’Dea.

It’s well over a year since the new cystic fibrosis drug was licensed, but the Health Service Executive (HSE) is yet to make a final decision on whether to reimburse the cost of the drug.

The country’s medicines watchdog, the National Centre for Pharmacoeconomics (NCPE), previously said Orkambi, an expensive ‘miracle’ drug that treats the life-shortening condition, was not cost-effective and advised against buying it.

Orkambi was estimated to cost €159,000 per patient per year when discussions began last year with manufacturer Vertex Pharmaceuticals.

Pressure mounting

Fianna Fáil’s Marc McSharry told the Taoiseach Enda Kenny today to prioritise the issue, stating: “people are dying”.

As we continue to procrastinate, sick children are getting sicker; some will die.

Pressure has been mounting on Health Minister Simon Harris to get the drug approved for patients, with protests taking place around the country.

Families and support groups have held candlelight vigils, with one taking place outside the minister’s constituency office in Bray on Friday evening.

Ireland is the country with the highest per-capita rate of cystic fibrosis, or CF, a fatal, genetic disease that causes severe problems with the lungs and digestive system.

It affects around 70,000 people worldwide and around 1,200 in Ireland. About 50 new cases of cystic fibrosis are diagnosed in Ireland each year.

Sam Mulan (7) who has cystic fibrosis with his mother outside Leinster House in Dublin last year. Source: Leah Farrell

Candlelight vigil

Willie O’Dea reminded the Taoiseach today that it’s been almost three months since there was a “very moving” demonstration outside the front gates of Leinster House.

“I attended a candlelight vigil in the rain in Limerick on Friday night with parents of children suffering from cystic fibrosis.

“They told us that since that demonstration outside Leinster House several children have died for want of that drug,” said O’Dea.

He asked when the drug will be made available to people “who are literally fighting for their lives”.

The Taoiseach said the decision to approve the drug was not one for Health Minister Simon Harris, explaining there is an independent process in place that makes the decision on clinical grounds.

I regret of course, and sympathise with those, where the death of anybody has occurred, never mind children.

“Sitting on the decision”

Fianna Fáil leader Micheál Martin accused the Taoiseach of “sitting” on the decision and called for urgent action.

Having spoken to Vertex (Orkambi’s manufacturer), McSharry said the decision is somewhere between the HSE and Cabinet.

However, Kenny disputed this in the Dáil today.

“Can the Taoiseach not knock heads together this week with the young Minister for Health, Deputy Harris [and] take a decision on this matter?” asked the Sligo-Leitrim TD.

McSharry claimed Vertex has put forward a proposal and are awaiting to hear back from the HSE.

“There is no excuse for the continuing delay,” said McSharry.

CF Ireland has warned there will be a strong backlash from families if no agreement is reached with the manufacturer Vertex Pharmaceuticals.