A NEWTOWNABBEY woman says she feels like a weight has been taken off her shoulders after it was announced a life-changing drug to treat cystic fibrosis will finally be made available here.
Last month, the North Belfast News brought you the story of 28-year-old hairdresser, Nicole Adams who was diagnosed with the disease when she was just six years old.
Her condition took a serious turn for the worse when she visited Thailand when she was 22 and caught a deadly airborne bug known as burkholderia cepacia.
Nicole was treated with the drug Orkambi but after suffering a bad reaction, her attentions turned to a new drug by US drug firm Vertex known as Symkevi.
However, a payment row between the company and NHS England meant the drug was not available here – until this week.
Last Tuesday, the Department of Health confirmed its intention to make Symkevi, along with Orkambi and Kalydeco, available to cystic fibrosis patients.
Although the drug is not a cure, it improves lung function. For Nicole, whose lung function is around 20 per cent, the drug could improve her baseline to 26 per cent, which, while sounding modest, will make a major difference to Nicole.
Speaking to the North Belfast News after Tuesday’s announcement, Nicole said: “It feels like it is not real. I am absolutely ecstatic.
“I was in the hairdressers when I got the call and I just went from laughing to crying. My emotions were all over the place.
“I couldn’t speak. I was so so happy. The first thing that came into my head was that I can actually look forward to moving on with my life and planning things like a normal person.
“Tuesday night was the best sleep I have had in years. It feels like a weight has been lifted off my shoulders.
“I am so grateful for all the support I have had since I publicised my story.
“I know the drug is not a cure but for me, but it is life-changing. If I am able to walk up two flights of stairs, it is two more than I could now.”
In an emotional video posted on Twitter, Nicole fought back the tears as she thanked people for their support in her campaign to get access to the life-changing drug.
“I lived my life in denial until recently because I didn’t want anyone to feel sorry for me. Everyone has been supportive and I can’t thank them enough. My life is going to change.”
Nicole is due to visit the clinic next week to find out how long it is before she can access the drug, but the timeframe for Nicole is expected to be no longer than a month.
Department of Health Permanent Secretary Richard Pengelly welcomed the news.
“The Department is delighted to be able to confirm its plans.
“This has been a very difficult and sensitive process. For patients with Cystic Fibrosis and their families, it has been a long and frustrating road.”
