Troy urges Minister to ensure CF drug available to children

Fianna Fáil TD Robert Troy has called on the Minister for Health to ensure all children suffering from Cystic Fibrosis can access “life-changing” drug Kaftrio within the “next number of weeks if not days”.

The Longford-Westmeath TD said the drug is not being made available to 35 children who “desperately” need it, including a young boy in Westmeath, due to an ongoing price dispute between the HSE and pharmaceutical company Vertex.

He added that every single delay is causing “irreparable damage to the children”.

“There is a cohort of about 35 children who are aged between six and 12, who were excluded from this drug because of their genotype,” Deputy Troy told the Dáil on Thursday.

“And that's despite medical people knowing that this drug will work and will greatly enhance the quality of their lives.”

He urged the Minister for Health Stephen Donnelly to ensure that a Health Technical Assessment (HTA) on the matter is concluded without delay with a “positive outcome”.

“Every single delay is causing irreparable damage to these children and potentially reducing their life expectancy,” he added.

Deputy Troy shared the issues facing the child in Westmeath who he said could not interact with his classmates as normal because of fears over infections.

He said he wants the process “concluded without delay to ensure that we have a positive outcome and ensure that he, and the 34 other children…can get access to this life-changing drug and can go on and live their lives normally".

In response, Minster of State Niall Collins, who was answering Topical Issues for the Minister for Health said access to drugs like Kaftrio was what the Government expected when the HSE signed their agreement with its manufacturer, Vertex, in 2017.

"That deal stipulated that our patients would have access to Vertex's whole portfolio of Cystic Fibrosis drugs for a capped yearly cost,” the Fianna Fáil TD for Limerick said.

“We entered this agreement. in good faith, expecting that as new licenses were approved for their medicines, the HSE would receive access at no additional cost....However, for this particular subtype, affecting a small group of children, Vertex are requesting additional funds to provide access.”

Deputy Collins added: “The Minister is pushing to have the HTA completed as soon as possible.

"In the meantime, the HSE's Corporate Pharmaceutical Unit (CPU) continue their open dialogue with Vertex and have met them a couple of times in January."