Please give me a chance... i’m scared of dying
backed up against the ropes knew she needed to fight back.
“Nicole refuses to go anywhere. She isn’t leaving her brother and mum. But where are the drugs that are available?
“When they were not available why wasn’t she getting them anyway on compassionate grounds? When will the drugs be here?
“Nicole is going to do herself and her family proud.What a fighter.”
Nicole first told us of her desperate need for US drug firm Vertex’s Symkevi pill on compassionate grounds in September, but never got it.
She fought on gasping for breath until last month we urged doctors and Vertex to give her new wonder drug Trikafta.
But despite meeting requirements for compassionate access to both Symkevi and Trikafta, Nicole has been left despairing after failing to receive either.
On Sunday, she rang the Daily Express in tears from hospital, telling us: “I’m so scared – I’m dying. What can I do?”
Ciaran added: “I told the doctors her life is in their hands. I can’t understand why for months she has not had either Symkevi or Trikafta.
“It’s heartbreaking. I’m stood here helpless with all these doctors around her. We’ve been fighting for months with no answers.”
Vertex’s compassionateand use programme sees their drugs given free to suitable patients whose lung function is repeatedly below 40 per cent.
Since last summer ex-hairdresser Nicole, who gave up work due to illness, has struggled with a lung function at a critical 20 per cent. Last month saw NHS drug deals for CF pills Orkambi and Symkevi struck across the UK after a determined crusade by the Daily
Express. We then launched a campaign to see Trikafta made widely available next year on the NHS. Currently it is only available on trials or for compassionate use.
Health Secretary Matt Hancock helped push through our fight for Orkambi and Symkevi after he met Daily Express writer and CF sufferer Carlie Pleasant, 29.
But healthcare is one of the devolved powers in Northern Ireland, meaning it is not overseen from Westminster’s Department of Health and Social Care. Instead,
NICOLE Adams contacted the Daily Express from hospital on Monday just before falling critically ill, telling us about her fear that she was dying.
In a heartbreaking plea for help she wrote of her frustration that doctors were unable to say when, or if, she would get wonder pill Trikafta.
She wrote: “Had a terrible morning, doctors said I’m quite sick.
“I asked them about the drugs and why haven’t I got them yet. They simply said I need to be stable.
“I’ve just asked them, am I going to die? What 28-year-old has to ask that question?
“I cried and told them I feel like I’ve given everything and for what?
“I’ve just had to tell my mum I’m scared, I’m scared of dying. I’ve emailed Vertex to plead and beg for them to give me a chance.”
Last Saturday Nicole told us how she is not allowed on Belfast City Hospital’s CF Unit due to having a nasty lung bug. She said: “I’m not allowed on the CF Ward, so they have me on a transplant ward and staff are amazing, but know little about CF.” responsibility belongs to Northern Ireland’s Department of Health, which is part of the Northern Ireland Executive.
When we contacted the hospital about the case yesterday, they told us the matter was out of their hands and responsibility lay with the province’s Department of Health.
But the department claimed that was not the case – and Nicole’s clinicians and the hospital were responsible.
Last week we revealed how Nicole had fallen critically ill when rushed to hospital with a temperature. She told us: “If there is one thing CF sufferers don’t have on their side it is time.
“I desperately want Symkevi or Trikafta and to have it by Christmas as I know it will make me feel a whole lot better.
“I have a very nasty lung infection and I’m getting that treated, so I am able to take the drugs as soon as they become available.”
Vertex – who like to boast how they give free drugs to extremely sick patients via their “compassionate use” scheme – confirmed they have had Nicole’s application but refuse to explain their delay.
‘I’m stood here helpless with all these doctors – we’ve been fighting for months with no answers’