Lorcan’s mum hits out over Orkambi call ‘delay’

Lorcan’s mum hits out over Orkambi call ‘delay’

20 March 2019

A DOWNPATRICK mother has claimed that the province’s Permanent Health Secretary is stalling for time in taking a decision about introducing the Orkambi drug for cystic fibrosis sufferers.

Jen Banks and her husband Dermot have had their hopes quashed that Richard Pengelly would intervene on behalf of patients to have the drug made available on the NHS.

The couple believe that the life of their two year-old son, Lorcán, would be greatly improved and extended in the longterm if he was to start taking Orkambi right away.

Orkambi is the only drug of its type available for children as young as Lorcán to take which treat the causes of the symptons of CF, not just the symptoms.

However, it is not available on the NHS due mainly to price. There are on-going discussions with the drug company whether Orkambi can be introduced into England at the right price.

The couple are moving to Louth within a few weeks as the drug has been available free of charge to CF patients in the Republic since 2017.

Under the Good Friday Agreement, they qualify as citizens and they will get Orkambi for their son as soon as they are residents.

Lorcán’s parents had hoped against the odds that Mr Penegelly would intervene and introduce an interim licence, as Scotland has done, to help Lorcán and other young sufferers.

Jen and the Cystic Fibrosis Trust enlisted the support of Jim Wells, the South Down MLA  and former Stormont Health Minister, to ask the head of the health service for a meeting.

He received a letter recently suggesting that any lobbying event in Stormont should wait until after negotiations between the drug company Vertex and the National Institute for Health and Care Excellence (NICE) are concluded.

However, Lorcán’s mum says that delay is unacceptable.

“This is just a stalling exercise,” said Jen. “I think it was incredibly rude for him to take a whole month to reply with a no. “Mr Pengelly has been aware of this issue for a long time and has had the power to do something about since November.

“It seemed very callous and I think he should have the decency just to meet with parents, the CF Trust and MLAs to discuss this.

“I think he wants and see and wait what England does so that they don’t have to make the decision themselves. For children like Loran they need to have Orkambi and they need it now. They can’t wait. We are fortunate in that we can move to Louth but many others can’t.”

A spokesman for the Department and the Health and Social Care Board rejected the claim that it did not want to meet with parents of children with CF.

He said: “The Department is continuing to work hard on this issue and are very committed in trying to bring about the necessary arrangements to enable patients in Northern Ireland to have access to Orkambi. 

“It is simply not the case that the Permanent Secretary or his officials do not want to meet with families, patients or representatives, but this is a complex process involving a commercial pharmaceutical company which will take time to progress.”

Mr Wells said he was also “disappointed” with Mr Pengelly’s response and supported the parents’ campaign.

“I was led to believe that the meeting would happen,” he said. “I suppose it’s a case of waiting to see if orkambi might be introduced into England which in turn would mean that it would be introduced throughout the rest of the UK.

“There’s around 300 patients in Northern Ireland who could take orkambi and at a cost of £100,000 per patient per year it’s extremely expensive.

“I do wonder, however, how much money the drug company needs to make to cover its research costs as it has already made £500m in the last five years.”