Belfast Telegraph

Northern Ireland hairdresser can hardly breathe but unable to get life-saving drug

Nicole Adams remains in hospital
Nicole Adams remains in hospital
Nicole Adams remains in hospital
Brett Campbell

By Brett Campbell

A Co Antrim hairdresser who is in hospital "fighting for every breath" is begging for Cystic Fibrosis medication which she believes could save her life but is not available on the health service.

Former dancer Nicole Adams (28) from Newtownabbey was hospitalised two weeks ago as a result of a series of devastating infections which have reduced her lung function to around 20%.

"My baseline is 26% and although it might not sound like much of a difference, it is," she said, speaking from her infection control room in the City Hospital.

"I used to go to work and would be at the gym attending fitness classes after but now I can't even walk up stairs without collapsing.

"I've just been told I'll have to give up work."

The young woman, 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.

Since then her health has deteriorated rapidly, but she believes the drug Symkevi could buy her precious time. "It would give me my quality of life back," she said.

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 of Ireland.

"I used to be so active - I was the Northern Ireland disco-dancing champion for three years running," Nicole recalled.

"Now I struggle to keep up with my physio and my body is becoming immune to antibiotics - I'm fighting for every breath but starting to fear time is running out."

Nicole is trying to get Symkevi on compassionate grounds, but keeps coming up against obstacles.

She said her situation was "heartbreaking", adding: "I've got so much to give and I'm struggling to keep up my fight without these drugs."

The former gymnast and cheerleader is currently receiving intravenous antibiotics and uses an oxygen mask to breath.

The rare drug resistant bug she 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.

A Department of Health spokesperson said policy is set by ministers and must follow National Institute for Health and Care Excellence (NICE) recommendations which has yet to issue any decision on Symkevi.

"While the department cannot diverge from ministerial policies, it fully appreciates the frustration and concerns of people with cystic fibrosis and their families on this issue," he added.

It vowed to monitor the situation but warned that the health budget is "under serious pressure" from competing demands.

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