Belfast Telegraph

Co Down mum vows to ‘chain myself to the railings’ to get cystic fibrosis drug for child

Jen Banks and her son Lorcan, who has cystic fibrosis
Jen Banks and her son Lorcan, who has cystic fibrosis
Donna Deeney

By Donna Deeney

The mother of a two-year-old boy diagnosed with cystic fibrosis has urged health officials to act and make the life-extending drug Orkambi available in Northern Ireland.

Jen Banks from Downpatrick had no first-hand experience of the crippling condition until the birth of her son Lorcan.

But over the past two years and nine months she has had to nurse him through crippling bouts of chest infections that can last for months.

This week NHS England said Orkambi, a drug that gives dramatic protection to the lungs of children and adults, will now be accessible there on the NHS, as it is in Scotland.

The Welsh Assembly is expected to follow, and the drug is already available in the Republic of Ireland.

However, it has not yet been extended to Northern Ireland.

Mrs Banks said it is imperative the Department of Health's top official here, permanent secretary Richard Pengelly, uses extra powers granted to civil servants last November to enable the drug to be prescribed on the NHS here.

It is estimated that around 100 people could benefit if Orkambi is introduced here, among them Mrs Banks' son.

She said: "As it stands Richard Pengelly has the power to make the decision to make Orkambi available in Northern Ireland.

"It has been agony waiting for this decision to be made. I have only been waiting since my son was born but there are people who have been waiting for the past four years since this wonderful drug came along.

"The difference it will make to people living with cystic fibrosis like Lorcan is incredible.

"At the minute all of Loran's treatment is geared towards his symptoms but Orkambi would treat the causes and it will slow down the decline of cystic fibrosis by up to 42% and reduce hospitalisation by up to 61%.

"Lorcan does two sessions of physio each day, he uses a nebulizer five times a day and takes 22 tablets to absorb fat from his food every day. He takes vitamins because he can't absorb them properly, so if we got Orkambi the difference would be huge.

"He is only going to get sicker and sicker and in fact he is still fighting an infection he got last November called pseudomonas that damages your lungs and shortens your life expectancy, so you can see how desperate we are to get Orkambi for Lorcan."

Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system, causing chest infections and problems with digesting food. Mrs Banks said: "Before Lorcan was born the only knowledge I had of cystic fibrosis is what I saw on TV.

"The worst aspect of it all is knowing there is a drug that could help Lorcan out there but we don't have access to it.

"I will chain myself to the railings if this drug isn't made available to families like ours." SDLP health spokesman Mark H Durkan supported Mrs Banks' call for the drug to be made available here. He said: "Access to the drug Orkambi will save lives and enhance the quality of life for so many people. It is necessary and as witnessed in Scotland and now England, access to this once declared 'unaffordable' drug is doable.

"The price of good health and improved quality of life cannot be quantified. Now is the time to move beyond talking and to start acting. Now is the time for the North to ask for the same, there is no reason why we can't achieve the same outcomes.

"We need a restoration of our institutions and we need a Health Minister making these life-changing decisions in defence of the health interests of people here. We need to call it out for what it is, this is the denial of health care to some of our most vulnerable."

Mr Pengelly said his department is exploring the possibility of making the drug available in Northern Ireland and he would do whatever possible to progress the issue. He said: I very much welcome the announcement that (Orkambi's maker) Vertex has come to an agreement with NHS England.

"I have asked colleagues in the Department and the Health and Social Care Board to now initiate urgent discussions on the implications of this decision for Northern Ireland.

"Commissioning these drugs would, of course, have budgetary implications at a time of serious financial pressures for health and social care.

"Notwithstanding the challenge that presents, we will endeavour to take this issue forward expeditiously."

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