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Please give me the drug I need

PLEA: Nicole Adams says an increase in lung capacity would change her life
PLEA: Nicole Adams says an increase in lung capacity would change her life
By Conor McParland

A YOUNG Newtownabbey woman has made a plea for a specialist drug to improve her life as a cystic fibrosis sufferer.
28-year-old hairdresser Nicole Adams was diagnosed with the disease when she was just six years old. However, in recent years her health has deteriorated and has been in the City Hospital for the last two weeks.
Now a row over money between the NHS and a drug manufacturer means she can’t get access to a drug that would expand her lung capacity and change her life immeasurably.
Speaking to the North Belfast News from her hospital bed, Nicole explained how a rare and drug-resistant bug picked up in Thailand has changed her life for the worse.
“As a child, I never had an admission to hospital. It was because I was so active. I was a disco dancer until I was 14. I did cheerleading, gymnastics and football too.
“When I was 22, I was first admitted to hospital with a flu. I was kept in for a few weeks due to the swine flu outbreak but thankfully I was ok.
“A year later, I went to Thailand and caught an airborne bug, known as burkholderia cepacia. It is one of the deadliest bugs you can get.
“I have had it for five years now and can’t get rid of it and automatically takes me off the lung transplant list because it is too much of a risk.
“I am a hairdresser and have my own studio. In the last couple of years, my health has declined.
“Not being able to get a lung transplant has left me with not many options.”
Nicole believes her hopes for improving her health lie with US drug firm Vertex and their latest drug known as Symkevi – but a payment row between the company and the NHS means the drug is not available in the North.
The Republic of Ireland and Scotland have both cut deals to give patients access to the drug, but patients here as well as England and Wales just can’t get it. And Nicole is pleading for that to change.
“Vertex have two types of drugs,” she explained. “The first one is Orkambi. I reacted badly to it and had to stop. It made me worse with very bad chest tightness.
“There is now a newer version of the drug out called Symkevi which I am trying to fight for on compassionate grounds. My lung function is 20 per cent but the drug could improve my baseline to 26 per cent, which is a big difference in my wee world, although it may not sound much.
“The drug is legal but the problem is money. The government won’t fund it on the NHS because it costs £104,000 per person per year.
“There is also the issue of no functioning government here to work on any deal and make decisions.
“I have asked to get it on compassionate grounds but there doesn’t seem to be an answer as to why they won’t give me it.
“The drug is not a cure but would stabliize my life. I am 28 now and have always worked and have just been told this week that I should stop working. I cried my eyes out because it’s all I have ever known.
“My oxygen levels are so low now that I may need oxygen support when I get out of hospital. I am frustrated knowing the drug is out there but I can’t get it.
“I want to spread a bit of awareness. I hid behind it for so long and people don’t realise how sick I can be. I cough a lot and I can’t breathe at times. It is tough going.”
Talks between NHS chiefs and Vertex Chief Executive Dr Jeff Leiden are expected to take place next month. Meanwhile, Nicole can only wait and hope.

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