The decision-making process is not yet complete on whether a drug treatment for Irish patients with severe lung disease will be funded by the HSE, the Dáil has heard.
Minister for Education Richard Bruton said the question as to whether Repreeza should be State funded "will go to the HSE's management committee".
He said the HSE had a process for deciding what drugs were supplied with the public paying for them. “These decisions are made entirely independently of the political process.”
Independent TD Michael Healy-Rae referred to an Irish Times report that more than 20 Irish patients with severe lung disease – generic emphysema – were facing the removal of the drug, which he described as life-changing, following its rejection by the HSE on cost-efficiency grounds.
A number of the patients had been on the drugs for up to a decade through a compassionate-use programme. However, the manufacturer CSL Behring has set the end of the month as a deadline for withdrawal of the medication.
Mr Healy-Rae appealed to the Minister to provide the money, an estimated €100,000 a year for each patient. The Kerry TD said a very close friend of his relied on this life-saving drug.
Referring to the more than 20 patients on the drug, he said if it was taken from them “they will slowly fade away”.
Power in their legs
“It is not a huge number of people, but my God their lives are every bit as important as mine or the Minister’s any day of the week.”
Mr Healy-Rae said that if the drug was taken from them “the immediate effect will be that they will lose the power in their legs, they will not be able to breathe and will have to fight for every breath”.
He called for the money to be provided, and for drugs companies to be tackled as well.
Mr Bruton said “it is very unfair if the company has given 20 people compassionate access to a life-transforming drug and is seeking to withdraw it from these patients as part of a negotiation to get a better price deal or wider access”.
He said the drug had substantial economic cost. Minister for Health Simon Harris had negotiated a €650 million saving for access to new drugs “by taking a hard-headed approach to negotiation with companies, but these 20 patients should not lose their access to this produce so that a negotiation can be concluded on more favourable terms”.
