Adams calls for urgent clarity on Orkambi
Sinn Féin President Gerry Adams TD today questioned the Taoiseach about media reports that the HSE drug committee has decided against recommending the Orkambi drug for CF sufferers.
The Louth TD described the Taoiseach’s response and correspondence that he received today from the drug company Vertex, as “creating serious confusion and upset for CF sufferers and their families”. Teachta Adams called for urgent clarification from the Minister for Health.
Gerry Adams said:
“This morning’s media reports that the HSE drug committee has not recommended the use of the drug Orkambi for more than 550 Irish CF sufferers will cause serious concern to those citizens faced with this life threatening condition.
“Before Christmas, Oireachtas members heard distressing first-hand accounts of CF sufferers and their families. Orkambi and Kalydeco can save lives. They can dramatically improve the well-being of hundreds of patients.
“The HSE’s drug committee has now referred this issue to its executive management team but media speculation also claims that it is unlikely to give the go ahead for an agreement with Vertex.
“However, the Taoiseach’s response to me in the Dáil suggests that discussions with Vertex have not closed.
“Vertex in its letter to me says that ‘in the last six months, we have put multiple proposals to provide access to Orkambi, including options available in other European countries like Germany and Austria. Our latest proposal – which we have developed with input and direction from the HSE – would provide access to Kalydeco and Orkambi and we believe meets all the criteria set by the HSE’.
“In light of the media reports, the distress that these will have caused to hundreds of CF sufferers and their families, and the confusion that now exists I am calling on the Minister for Health Simon Harris to immediately clarify the state of discussions and decisions to be taken on this issue.”