Fianna Fáil TD for Cork North Central Padraig O’Sullivan and Fianna Fáil Senator for Dublin South West Teresa Costello have called for the review of the drugs reimbursement process to be expedited following last week’s decision not to support a treatment for Duchenne Muscular Dystrophy (DMD).
The Programme for Government commits to a review of the Drugs Reimbursement Scheme, with the National Centre for Pharmacoeconomics (NCPE) playing a central role in the assessment process.
Deputy O’Sullivan said the language used in recent communications has caused pain among many families affected by rare diseases.
“This week the Minister for Health described the language used in the assessment process as ‘brutal’. To us, that signals a system that is not showing the necessary compassion or understanding for people across Ireland living with Duchenne Muscular Dystrophy and other rare diseases.
“The description of a drug as simply ‘not cost-effective enough’ is extremely difficult for families to hear. Behind these decisions are real people whose conditions are worsening day by day without access to treatments that could help them.”
Senator Costello said that while the NCPE has an important role in assessing value for money in the health system, the process must also recognise the realities faced by patients and families.
“We understand that the NCPE has a job to do and that there are limits on public expenditure. However, the way these decisions are communicated matters, particularly for families who are dealing with progressive and life-limiting conditions. On a human level, the right thing to do is to give them the medication that they need to keep them on their feet and protect their little bodies until more drugs come along.
Shedding light on a family she has worked with who have two brothers with DMD, Senator Costello said:
“We know of a family who have two boys with DMD. One of them boys is 22 years old and has accessed Givinostat up the North through a clinical trial. He’s walking, he’s driving and he’s living his life to it’s fullest. In contrast with his brother who is 11, and he is deteriorating. The process needs to be expediated.
Both representatives said the issue extends beyond a single decision and reflects wider concerns about access to treatments for rare diseases in Ireland.
“This is not an isolated case. We have also seen treatments such as Skyclarys for Friedreich’s Ataxia, which has been approved in the UK, other EU member states and the United States, refused here on cost grounds. Earlier this year we also saw the refusal of Omaveloxolone.
“These decisions are leaving many people across Ireland without access to treatments that could improve their quality of life. That cannot continue.”
Deputy O’Sullivan added:
“This decision highlights what many families feel is a lack of understanding and empathy at the heart of the current system.”
Both representatives said the Government’s planned review of the reimbursement process must now be progressed without delay to ensure patients with rare diseases receive fair and timely consideration for new treatments.
ENDS