Martin wants quick decision on Friedreich's Ataxia drug
Taoiseach Micheál Martin has said he wants to see patients living with Friedreich's Ataxia in Ireland have access to the first treatment for the condition "as fast as we possibly can".
He was responding to Sinn Féin leader Mary Lou McDonald who asked in the Dáil why the drug Skyclarys was not on the agenda for tomorrow's HSE Drugs Group.
The drugs group is the HSE’s national committee that makes recommendations on the pricing and reimbursement of medicines.
Ms McDonald said: "Further delay is intolerable and cruel because there is no pause in this disease.
"Every day lost has consequences."
Ms McDonald highlighted the plight of patients who were protesting outside Leinster House this afternoon and were also present in the public gallery at the time.
She asked for a commitment that these patients will get access to the treatment.
Mr Martin told Ms McDonald he was interested in "getting this drug over the line" and not in "playing games".
"We need to get this decided upon as quickly as we possibly can.
"There are many, many families out there worried and stressed," he said.
He said the drug for the rare disease will not be on the agenda tomorrow, but said the Government is endeavouring to have it on the agenda at the July meeting.
Independent Ireland TD Michael Collins also asked for the Taoiseach to intervene for the drug to be included in tomorrow's meeting.
He said he has raised this multiple times and directly written to the Minister for Health on the issue.
"But here we are again, left in limbo," he said.
He called Friedreich's Ataxia a "cruel" and "relentlessly progressive disease".
He said the drug is approved in other European countries but "once again Irish patients" are left waiting, adding that their "time and their health slips away because of bureaucracy".
The Taoiseach told the Dáil decisions need to be made quickly regarding the drug
A spokesperson from the Department of Health said the Minister for Health Jennifer Carroll Mac Neill and Mr Martin met with the families affected by Friedreich's Ataxia and "are acutely aware of their plight".
The spokesperson said the HSE met with the applicant on 12 February and on 18 May, and, as part of the next step in the process, the HSE's Drugs Group will "consider all evidence, including outputs of commercial negotiations and recommendations of the NCPE, and issue a recommendation to the HSE Senior Leadership Team, which holds final decision-making authority on the reimbursement of a medicine".
Taoiseach 'sympathetic' and 'emotional' during meeting
Yesterday, Mr Martin met Craig Coady, whose son Paudie has Friedreich's Ataxia in Cork.
Mr Coady’s youngest son Rory, 13, "passed away eight months ago with this horrible disease".
Last month, Mr Coady said: "I lost a son. I don’t want to lose my second son."
He described the Taoiseach as "emotional" and "sympathetic" during the meeting.
Among the patients protesting this afternoon was Emily Felix, 28, a trainee solicitor from Co Kilkenny with Friedreich’s Ataxia.
Ms Felix told RTÉ News in February that she needs "this treatment now or else it might be too late".
This afternoon, she said: "We need a decision now. We need this drug to be on the agenda tomorrow.
The Kilkenny woman said: ""I am losing ability. My swallow is deteriorating. My speech is going. My transfers are getting harder and harder.
"Fo them, it's only an administrative delay, for me that will be permanent loss that I can never regain," said Ms Felix.
The HSE said decisions on which medicines are reimbursed by the taxpayer are made on "objective, scientific and economic grounds".
It said when it is making its decisions it "considers the health needs of the public, the cost-effectiveness of meeting health needs, the availability of items, the proposed costs and benefits, the clinical need for a medicine, the level of clinical supervision required, a drug’s performance in trials and the resources available".
The HSE said the application for Skyclarys remains under consideration.
The company that makes the drug, Biogen, previously said a revised proposal for Skyclarys has been submitted to the HSE.
It said it recognises that delivering sustainable access to rare disease medicines depends on "constructive collaboration" with health authorities.
"Our collaborative approach has supported national availability of omaveloxolone in 10 countries, including nine in Europe: Germany, Slovenia, Luxembourg, Austria, Switzerland, Poland, Slovakia, Italy and Spain.
"In Ireland, Biogen is actively engaged with the Health Service Executive to help make this medicine available to people living with Friedreich's ataxia."
