Fianna Fáil Spokesperson on Health, Billy Kelleher has said that the decision to refuse funding to provide Respreeza for people with Alpha-1 is disappointing and will leave those currently on the drug in limbo.

“Reports in the media seem to indicate that the HSE has failed to agree a price with the drug’s manufacture, CSL Behring after many months of protracted negotiations.

“The 21 patients currently taking Respreeza on compassionate grounds will be left in limbo by this decision.

“Their health and wellbeing has been dramatically improved since they began taking the drug.

“Last April, I along with my Fianna Fáil colleagues, brought the issue to Leinster House where patients currently on Respreeza had the opportunity to put forward their concerns to members of the Oireachtas.

“There is a deep anxiety, worry and indeed fear among these patients and their families about their futures if access to Respreeza is ended.

“How can the HSE allow a situation whereby this drug will be taken away from them knowing that their health will undoubtedly deteriorate?

“Respreeza has been approved for use in 12 other EU member states yet the Department of Health and the HSE have deemed it to be insufficiently effective to fund.

“The cost of paying for this medication is substantial but the effect on the quality of life of people with Alpha-1 is equally profound.

“Cost alone cannot be used as the primary criteria for the funding of high-tech drugs such as Respreeza.

“Minister Harris cannot allow this decision stand and must provide leadership.

“The Minister must also show political will and support. If he does, I have no doubt that a successful outcome to these negotiations can be found.

“He must show leadership on this issue and find a solution. He cannot leave these 21 patients in limbo worried and concerned for their wellbeing and future health,” concluded Kelleher.