Cystic fibrosis drugs deal hailed as ‘massive victory’

Politicians and advocacy groups have welcomed the deal between the State and the manufacturers of drugs used to treat people with cystic fibrosis (CF).

In March, hundreds of people with the illness demonstrated outside the Dáil in support of free access to Orkambi and Kalydeco for those living with the life-threatening condition.

After the deal was announced on Tuesday evening, Cystic Fibrosis Ireland (CFI) paid tribute to everyone who had "spoken out so bravely" in recent months.

Spokesman Philip Watt also welcomed an element to the agreement between the HSE and Vertex Pharmaceuticals which includes access to "pipeline drug therapies" that are currently showing promise in the advanced stages of clinical trials.

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Fianna Fáil leader Micheál Martin described the agreement as "great news for the hundreds of patients, and their families, who have campaigned for years to get access to this life-saving drug".

He said it was “testament to the hard work of Cystic Fibrosis Ireland, and those living with the disease” who, he said, “never stopped fighting [and] never gave up hope”.

Dramatically improve lives

He expressed the hope that Orkambi would dramatically improve the lives of CF patients. “They have been unequivocal in their belief that they deserve the chance to benefit from this drug. While it won’t work for every single patient, it will work for many, and give them a much better life,” he said.

Mr Martin added that he was "heartened" that the HSE and Vertex had concluded agreements on the future use of other similar treatments which may be used to treat different cohorts of patients.

Sinn Féin president Gerry Adams described the agreement as "a massive victory for those who have spent months fighting for access to what will be a life-changing drug" and he "wholeheartedly" congratulated the campaigners involved.

“We have heard from many with cystic fibrosis and their family members, emotive and heartbreaking stories. We have heard from parents who have buried their children, and patients who manage gruelling daily medical regimes and who endure recurrent hospitalisation. This is their victory and we must now ensure that Orkambi is made available without delay,” he said.

Concern

The Irish Pharmaceutical Healthcare Association also welcomed the deal struck by the HSE as evidence of a policy commitment to new patients getting access to new medicines.

However, while acknowledging the benefit for many cystic fibrosis sufferers and their families, the association also expressed concern at the many other drugs still awaiting reimbursement by the HSE.

“While there has been much publicity about this CF medicine, it should be noted that many more patients and their doctors are awaiting a decision from the HSE on the funding of other drugs, for example, in oncology, respiratory and cardio vascular care,” according to association chief executive Oliver O’Connor.