NI mum devastated over failure to make breakthrough medication available

Jen Banks and son Lorcan
Jen Banks and son Lorcan
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The mother of a young boy with cystic fibrosis has said she is devastated by the refusal of Northern Ireland health bosses to commission a breakthrough new drug.

Jen Banks, whose two-year-old boy Lorcan’s life could be “transformed” by a drug known as Orkambi, has been campaigning for the medication to be made available in Northern Ireland for some time.

Scotland’s health minister announced on Thursday that Orkambi, along with another cystic fibrosis drug known as Symkevi, would be available to patients there,

But the Department of Health here said yesterday that it does not plan to follow suit, unless the drug is approved by the National Institute for Health and Care Excellence, a body which makes decisions for NHS patients in England and Wales..

Despite her disappointment at hearing that news yesterday, Co Down mum Jen Banks believes the department could yet “find a way” to help Northern Ireland patients get access to the new medicines.

“It’s now available in the Republic of Ireland and in Scotland, so we’re in a situation where if we went south it would be available and if we went east to Scotland, it would be available,” she said.

“But we’re here in the middle and we can’t get it.

“The Cystic Fibrosis Trust are due to meet with the Permanent Secretary at the Department of Health, Richard Pengelly, for the first time so I have not given up hope that something might be worked out.

“I am so pleased for all the patients in Scotland who this is going to help. It’s just so wonderful.”

She continued: “I love what they’ve done in Scotland and I hope the Department here might find a way to follow suit.”

A spokesperson for the Department of Health said: “The Department has a formal link with the National Institute for Health and Care Excellence (NICE) under which NICE Technology Appraisals are reviewed locally for their applicability in Northern Ireland. Where found to be applicable they are endorsed by the Department for implementation within the Health and Social Care system.

“NICE has not recommend the use of lumacaftor/ivacaftor (Orkambi) or tezacaftor/ivacaftor (Symkevi) for treating cystic fibrosis and so they are not offered as a routinely commissioned treatment for cystic fibrosis in Northern Ireland.”