Monday 13th June

CFI urges Vertex to come to a rapid accommodation with the HSE on access to Kaftrio for the 35 excluded children

Monday 13th June 2022

CFI urges Vertex to come to a rapid accommodation with the HSE on access to Kaftrio for the 35 excluded children

CFI urges Vertex to come to a rapid accommodation with the HSE on access to Kaftrio for the 35 excluded children

CFI met with senior representatives from VERTEX at the European CF Conference in Rotterdam on Friday 10th June. The meeting was at the request of CFI and the tone of the meeting was robust but constructive. It was an important opportunity for CFI to outline the impact of the recent decision that has left 35 children aged 6-11 'out in the cold' in respect of access to Kaftrio.

Philip Watt CEO of CFI stated "we have met with VERTEX and they have now heard our concerns directly. We continue to press for and expect a similar meeting with the Minister for Health. Responsibility for resolving this dispute lies with both parties. The 35 children with CF should not continue to suffer because of an issue that should have been foreseen and avoided."

Please note there will be an update webinar for concerned parents on Thursday 16th June at 7pm.