Double blow for couple battling for sick Lorcán

Double blow for couple battling for sick Lorcán

10 April 2019

A DOWNPATRICK couple have received a devastating double blow in their fight to get life-extending medication for their son who has cystic fibrosis.

Jen Banks and her husband Dermot Maguire have been campaigning to have the drug Orkambi made available in Northern Ireland free on the NHS. 

The couple had relied on a temporary move to Louth in order to start their two year-old Lorcán on Orkambi as soon as possible as it is provided free to cystic fibrosis patients as young as two in the Republic.

The move was made even more urgent when, just before last Christmas, Lorcán developed the bacterial infection, pseudomonas. This bacteria increases the rate of lung decline and puts him at a greater risk to other infections.

The hopes of Lorcán’s parents crumbled when they heard last week that the house purchase, made possible by Jen’s parents, had fallen through due to a legal issue.

Then just five days later, the couple learnt that the intensive antibiotic treatment that Lorcán had been receiving over the past three months had failed to treat the bacteria.

Jen told the Recorder last night that she and her husband “were at their wits end” at the current impasse.

“The medical team are going to try two weeks of a different nebulised antibiotic with Lorcán and then if it still there, it’s two weeks of IV treatment in hospital,” she explained. “They will try alternative antibiotics and treatment for the next six months. It is such bad timing with the house falling through last week.

“We just think he could be on Orkambi right now if we were across the border. 

“It’s such a hard thing to talk about to people at the moment about that the treatment not working and hard to explain as Lorcán looks so well.

“I haven’t been out much since the news and when I went to one of Lorcán’s wee groups all I could do is cry.”

An option for the young couple is to possibly consider is making a permanent move to Louth and sell their Downpatrick home. 

Lorcán was diagnosed with cystic fibroris at 12 days old. It is a genetic condition that causes the body to produce thick mucus, which mainly affects the respiratory and digestive system but also affects multiple organs throughout the body.

Orkambi is the only drug of its type available to treat the causes and symptoms of CF for children as young as Lorcán.

It costs £110,000 per year to treat a CF patient and parents claim it can add 20 years on to a CF patient’s life expectancy.

It was licensed for 6-11 year-olds by the European Medicines Agency in Europe in January 2018, and was again licensed for 2-5 year-olds in January.

While thousands of parents of CF patients throughout the UK believe that it will treat the underlying cause of CF, not just the symptoms, it has not yet been been approved by the National Institute for Health and Care Excellence (NICE) for England and Wales.

NICE has also failed to reach a purchase agreement with the drug’s manufacturer Vertex.

The Scottish Medicines Consortium recently introduced Orkambi on a case by case basis for interim access.

However, Lorcán’s parents are so desperate to get the drug for him that they, along with other CF parents here, have been calling for Stormont to adopt a similiar arrangement. 

The 34 year-old mum of two admitted that she had made a desperate call to the Permanent Health Secretary Richard Pengelly’s office last week and burst into tears talking to his secretary.

Mr Pengelly’s office sent a letter on April 4  in reply to the mother’s latest enquiry regarding Orkambi for Northern Ireland which stated: ‘This is a difficult issue which includes consideration of questions relating to cost and clinical effectiveness and access to commercially confidential information, which adds further complexity. However, I would hope that these discussions will be concluded as soon as practically possible.’

The couple say that they feel that their options are limited, particularly in the absence of a Stormont executive and the ongoing uncertainity regarding Brexit.

Jen said: “I blame Brexit as everyone is waiting around to see what happens and I think Stormont would have been up and running again if it hadn’t been for that.”

A recent petition to have Orkambi introduced in line with other EC countries has gained more than 100,000 signatures to have it debated in parliament.

“The petition getting 100,000 signatures last week is the only good news we have had, but the earliest it can happen is June,” said Jen.

“I would like to thank everyone who as signed the petition as we know that a high percentage of those who did came from Northern Ireland.”

Jen, in agreement with her husband, has been very vocal in telling Lorcán’s story to the media but says it’s a position she would rather not have to take.

“It’s very, very hard to stay positive at the moment and very hard to keep going with Lorcán’s treatment when you feel that it’s not working. The treatment so far has only kept the levels of the bacteria at a low level, not to clear it up,” she said.

“I hate having to spill my guts to the media but the reason for sharing his story is to implore the public, politicians and media to support the Orkambi Now campaign.”