Reimbursement of drug a 'huge relief' for Longford Friedrich’s ataxia patients
There are at least 12 people with FA in County Longford who are set to have an opportunity to benefit from the reimbursement of Skyclarys and 200 people with the disease across Ireland.
A Longford TD has said the decision by the HSE to approve the reimbursement of Skyclarys for patients with Friedrich’s ataxia will come as a huge relief for patients and their families.
Longford families are delighted today after it emerged shortly after 12-midday that the Health Service Executive has approved the reimbursement of the drug Skyclarys for people with Friedreich's ataxia (FA).
There are at least 12 people with FA in County Longford and 200 people with the condition across Ireland.
FA is an inherited genetic disorder that causes progressive damage to the nervous system, heart, and pancreas.
The positive development came after the drug company Biogen made a significantly improved offer to the HSE.
Fine Gael Parliamentary Party Chairman, Micheál Carrigy, who had met recently met with Skyclarys manufacturer, Biogen, along with his Fine Gael colleagues Deputies Catherine Callaghan, Seán Kyne, David Maxwell, Noel McCarthy, John Paul O’Shea and Senator Noel O’Donovan, said he was very pleased by the positive conclusion to the HSE reimbursement process today.
“We welcome the conclusion of the statutory assessment process and today’s positive outcome.
“In our meeting we encouraged the company to engage seriously with the HSE so that a route to reimbursement might be found, and it is very welcome that this positive outcome has happened.
“We have a statutory process for the assessment of new medicines in this country, which must be respected, but it is very important that everyone comes to the table and negotiates for the benefit of patients.
“I want to express my appreciation to all sides for their dedication to get this vital agreement in place.
“We want to thank the Minister for Health Jennifer Carroll MacNeill for her work on this and will continue to work with her to ensure arrangements are finalised and in place as soon as possible.
“We also pay tribute to the campaigners who advocated so hard for this decision, many of whom we know personally, and we know this will be an important day for them and their families.”
A HSE spokesperson said Biogen "has moved substantially from its previous position, and the HSE wants to express its appreciation of the flexible and constructive approach shown by the company".
The HSE Senior Management Team met this morning to discuss the matter and they said that following the "very different commercial offering to that which the HSE Drugs Group considered", they decided "on balance" that it would "approve reimbursement for Skyclarys based on the new commercial offering".