Dad’s ‘dream COMEFRIDAY true’ over deal for new CF treatment

Liam’s delight at life-extending drug breakthrough

Liam Mchugh has campaigned for sufferers since Rachel was diagnosed with the condition 28 years ago.

He said news the Health and Social Care Board and Vertex Pharmaceuticals are on the brink of a landmark deal to supply patients here with life-extending Kaftrio is a “dream come true”.

Trikafta, now called Kaftrio in Europe, is the first drug to treat the disease in around 90% of sufferers.

A deal has already been agreed by NHS England, but a tag-along clause in the contract allows Northern Ireland to also sign up for the treatment.

Mr Mchugh, from Castlederg in Co Tyrone, revealed Health Minister Robin Swann wrote to him this week to confirm the HSC had been instructed to begin deal talks for the life-prolonging drug.

The Department of Health said “sensitive negotiations” are ongoing.

Earlier this month, the European Medicines Agency gave the thumbs-up based on scientific evidence, meaning it could be just weeks from approval.

CASTLEDERG YESTERDAY EMOTIONAL

Mr Mchugh said: “I never thought we, all of the people who have been fighting for this for so long, would ever get here.

“Orkambi and Symkevi have been working wonders for so many years but this will transform people’s lives, it will save thousands.

“Young people who are born today with cystic fibrosis will be able to live full lives, it is just incredible.

“We have been fighting so long for this treatment and it will be an emotional day when we finally get it.

“I have been in contact frequently with Robin Swann’s office and the news sounds good.

“I don’t think people quite understand, unless you are affected by this disease then people don’t get the enormity of this decision.

“It will be the biggest day in cystic fibrosis history.”

However, Mr Mchugh acknowledged not everyone will be celebrating.

There are around 1,800 mutations of cystic fibrosis with 10% unable to access any form of drug. He added: “I know they will be happy there is progress being made and for a drug to be able to treat around 90% is incredible.

“I’ll not stop campaigning for those people, they deserve to have treatment too and we will continue to fight for them.”