Cystic Fibrosis Ireland welcomes medication deal

Cystic Fibrosis Ireland has welcomed the long-awaited deal completed by the HSE and drug manufacturer Vertex to make a wonder CF drug available.

Cystic Fibrosis Ireland welcomes medication deal

Almost 600 patients will benefit from Orkambi and Kalydeco because of their particular CF genotype. These drugs slow the progression of the illness, reduce hospitalisation caused by sudden worsening of the condition, and reduce dependency on other drugs like expensive antibiotics.

CFI chief executive Philip Watt said there “ is a very innovative element to the agreement which is that it is inclusive of ‘pipeline drug therapies’ from the same company that are currently showing promise in the advance stages of clinical trials”.

“Even with Orkambi and Kalydeco, there will be around 30% of the CF population that still has no drug that treats the underlying cause of their condition in Ireland. This is why a pipeline deal is so important. There also may be better drugs for those on existing Vertex drugs coming down the line.”

Health Minister Simon Harris told the Dáil that agreement had been reached “ in principle” between the HSE and Vertex on the commercial terms for the supply of Orkambi and Kalydeco to patients from next month.

Orkambi can be used by patients aged 12 and over while Kalydeco can be used on children aged 2-5.

Mr Harris said: “Both parties are now working to finalise the contractual arrangements and complete approval processes in advance of May 1. I want to also especially acknowledge that this has been an extraordinarily difficult time for CF patients, their families, and friends as they have been waiting for this process to conclude.”

About 40 people with CF had been receiving the treatment on a trial or compassionate-use programme.

Once the deal has been scrutinised by HSE lawyers, it will go before Cabinet for final approval.

Fianna Fáil TD Marc McSharry said “while the agreement in principle is welcome, the fact that it has taken this long to get to this point is beyond reprehensible”.

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