Joy at Northern Ireland deal for CF wonder drug
EXCLUSIVE
FAMILIES wept with joy yesterday after Northern Ireland joined England and Wales in agreeing a deal for the ultimate cystic fibrosis (CF) wonder drug.
CF is a cruel, life-limiting genetic condition which destroys the lungs with sticky mucus but US firm Vertex’s Kaftrio pill is dubbed “almost a cure”.
Last month the Daily Express revealed how NHS England signed a landmark deal with Vertex for this incredible treatment.
On July 22, Wales followed suit – and now Northern Ireland has also agreed terms, leaving just Scotland to sign a deal withVertex.
Liam McHugh – whose daughter Rachel, 28, has CF – has been campaigning for awareness and treatments in Northern Ireland for three decades.
Yesterday overjoyed Liam, 58, of Castlederg, County Tyrone, told us: “I never thought I’d see this day.
“After 28 years of fundraising £270,000 and campaigning for life-saving drugs for CF this is the best day of my life.
“My daughter Rachel has been on Vertex’s earlier drug Orkambi for seven years and it has transformed her life. We are so excited to see even greater benefits for her on Kaftrio.”
Rachel has used her Orkambi to study and is now a professor of psychology, helping college students combat mental health problems especially during lockdown.
Liam added: “The day Rachel
Campaigner Liam McHugh with daughter Rachel who suffers from CF
was diagnosed it felt like a funeral. Our world caved in.
“Now Rachel and others with CF can finally look forward to a bright, long and healthier future.”
Since February 2019 the Daily Express has been relentlessly crusading for a Vertex/ NHS drug deal.
Negotiate
Last autumnVertex finally signed deals with all four UK nations for access to their current pills, Orkambi, Symkevi and Kalydeco – suitable for around 50 per cent of sufferers.
But last month NHS England signed a landmark deal for Vertex’s fourth, latest and most superior drug Kaftrio – due to be licensed for use in Europe next month.
Kaftrio will eventually be able to be taken by 90 per cent of UK CF sufferers but as yet it is only licensed for adults and children aged over 12.
Until then young CF children, if medically able to, can only take Orkambi.
June’s NHS England contract allowed for Northern Ireland, Wales and Scotland to negotiate their own deals but on the same terms.
Yesterday’s news now leaves just Scotland to agree terms for Kaftrio – but health chiefs there are understood to be deep in talks.
Dr Keith Brownlee, Director of Policy, Programmes & Support at the CF Trust charity, said: “We’re delighted to see Northern Ireland andVertex reach a deal.
“It will ensure hundreds of people across Northern Ireland will access this truly life-saving medicine.”
CYSTIC Fibrosis victim Nicole Adams has told how Kaftrio has given her a new lease of life after fearing she was dying.
Nicole, 28, was being treated in intensive care when the Daily Express helped her get the drug directly from Vertex.
Now her lung function has trebled, she has gained 2st, is out running and enjoys bike rides.
Nicole, of Belfast, said: “Kaftrio is my saviour as I prayed to God to help me pull through this dark place I found myself. Last December my body was weak, my mind was weary and my lungs were failing.
“I ended up in ICU and my only chance to get through this was Kaftrio which I was given free from Vertex after a Daily
‘Dark place’...Nicole treated in hospital
Express campaign. And boy hasn’t it just changed how I live? Once I could not take 10 steps from my bed to the bathroom without oxygen. Now I’m running for 30 minutes on a treadmill and cycling 12 miles for the first in many years. “I had to give up my hair salon because of CF but now I’ve created my own clothing range 65rosesthebrand all inspired by CF. “Every item bought I donate £5 to my local CF unit. Kaftrio has brought back that happy go lucky girl I thought I’d lost. “This news for Northern Ireland, coming after Wales and England, is amazing. I cannot wait for the 90 per cent of the CF community who can take Kaftrio to be able to get this feeling and get an extra chance at having an amazing life.”