Belfast Telegraph

Family of Northern Ireland woman 'fighting for her life' in hospital issue plea for life-saving cystic fibrosis drug

Nicole Adams with her boyfriend Ciaran McVarnock
Nicole Adams with her boyfriend Ciaran McVarnock
Lauren Harte

By Lauren Harte

A Co Antrim woman is "fighting for her last breath" as she waits for life-saving cystic fibrosis medication.

A series of devastating infections have left Nicole Adams (28) from Newtownabbey in hospital for the last 12 days.

Her lung function has been reduced to around 13% and in recent months she has been relying on oxygen for small tasks such as walking up stairs.

Nicole's family and friends are now pleading with health chiefs to allow her immediate access to a specialist drug, which is not available on the health service.

They are pinning their hopes on part of a triple therapy treatment named Trikafta, which is currently available in America, but is not yet licensed in Northern Ireland.

Nicole's boyfriend, Belfast boxer Ciaran McVarnock (27) said yesterday she is being left to fight for her life but time is not on her side.

Nicole, who was diagnosed with the incurable respiratory condition when she was just six weeks old, contracted an airborne disease (burkholderia cepacia) while in Thailand in 2014.

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Since then her health has deteriorated rapidly, but she believes the drug Symkevi, which is part of the Trikafta treatment, could buy her precious time and give back her quality of life.

However, US pharmaceutical company Vertex, which manufactures the medication, has failed to strike a deal with the NHS to supply the product in Northern Ireland, England and Wales.

It is available in Scotland and the Republic.

Nicole in hospital
Nicole in hospital

Nicole was previously granted Orkambi before it was made available in Northern Ireland on compassionate grounds but had to stop taking it when she developed side effects.

The rare disease Nicole picked up five years ago means she cannot avail of a lung transplant, leaving a deal between NHS chiefs and Vertex chief executive Dr Jeff Leiden as her only hope.

The former gymnast and cheerleader is currently an oxygen 24 hours a day in Belfast City Hospital and is too weak to speak publicly. Ciaran revealed Nicole's current condition is "breaking my heart".

"On Tuesday Nicole was so ill that doctors suggested she go into intensive care and be put on life support but she refused, saying that no one ever comes back out of there again," he said.

"We had booked to go on a three-week holiday in the sun over Christmas.

"But now instead Nicole is fighting for her life.

"Nicole's consultant has applied for her to receive the medication (Symkevi).

"We keep hearing the word 'hopefully' they will be able to get the medication but that's not good enough.

"Her illness is just overpowering her and her lungs are failing. It's breaking my heart to see a young girl's life on the line but she needs to fight to get better in order to get the medication.

"I just hope and pray that the drugs will be ready for her when she is strong enough again."

The Health and Social Care Trust (HSCT) said: "Arrangements have recently been put in place to allow patients in NI to have access to three medicines made by Vertex (Kalydeco, Orkambi and Symkevi) following a clinical assessment and without reference to the HSC board.

"Use of medicines on a compassionate basis may be undertaken following agreement between the patient's consultant and a pharmaceutical company."

The HSCT added that for a patient to receive medicine on a compassionate basis, they may have to first meet criteria set by the manufacturer.

With time running out, family and friends have launched a GoFundMe page called Nicole's Fight to Breath to raise £20,000, which would pay for one month's supply of Symkevi.

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