I struggle to breathe every second says dancer victim of life-saving drugs snub
A CYSTIC fibrosis victim says she is struggling to breathe every second as she is denied life-saving drugs in their maker’s payment row with the NHS.
Former dancer Nicole Adams, 28, who has only 20 per cent lung function, says that the drug Symkevi could improve her health.
But US drug firm Vertex has failed to strike a deal with the NHS to provide her with the medication for free.
As a youngster, Nicole was Northern Ireland’s disco-dancing champion, a gymnast and cheerleader.
But now, after a series of devastating lung infections, the Belfast hairdresser is in hospital, receiving intravenous antibiotics and breathing with the help of an oxygen mask.
She has been told Symkevi could help but Vertex does not supply Northern Ireland, England or Wales.
Doctors say she cannot have a lung transplant after picking up rare and drug-resistant bug Burkholderia cepacia on a trip abroad. Nicole is pleading with NHS chiefs and Vertex chief executive Dr Jeff Leiden to agree a deal for the wonder pills.
Nicole said: “I was given Orkambi previously on compassionate grounds but I reacted badly to it and had to stop. Now Vertex’s newer version Symkevi – and their future wonder drug Triple Therapy – are my only options but I’ve yet to manage to get Symkevi on compassionate grounds.
“It’s heartbreaking. I’ve got so much to give and I’m struggling to keep up my fight without these drugs.”
Nicole was diagnosed with CF at three months old but managed to live an active life and, incredibly for a CF sufferer, was not admitted to hospital until she was 22.
She said: “I had an amazing childhood, I was so active. I was the Northern Ireland disco-dancing champion for three years running. But as I hit my 20s things started to change.”
Nicole, who is dating Northern Ireland boxing star Ciaran McVarnock, 27, said: “I’m unsure why I can’t get Symkevi on the same compassionate Nicole was disco-dancing champion
grounds like Orkambi. Now my only hope is for a swift deal between the NHS and Vertex.” The firm said Nicole’s doctors need to apply to them to confirm she is eligible for free “compassionate use” Symkevi.
The Daily Express has been crusading for NHS England (NHSE) to agree a deal with US drugs firmVertex.
For over a year Vertex has stalled over a £108million-a-year NHS England offer for medicines like Orkambi and Symkevi. Since Orkambi has been licensed worldwide but unavailable here, 269 UK adults and children are estimated to have died needlessly. The CF sufferer has to stay in hospital
Dr Leiden – who earns a £14.8million basic salary – has repeatedly snubbed Daily Express requests for an interview over the crisis. Two weeks ago Scotland joined Ireland in sealing a deal with Vertex, but patients in Northern Ireland, England and Wales cannot be given it for free.
NHS England has dismissed suggestions the rest of the UK would wish to replicate Scotland’s deal, branding Vertex “an extreme outlier in its monopoly pricing”. Hopes are pinned on talks planned next month between Health Secretary Matt Hancock and Dr Leiden.