Families in Dublin have gathered in a public demonstration to demand faster approval for the reimbursement of the drug Skyclarys, used to treat a rare inherited neurodegenerative disorder. The protest, organized by patient advocacy groups, highlights the urgent need for access to the medication, which helps manage symptoms that can severely impact movement and coordination, often beginning in childhood.
The disorder, which affects the nervous system, is rare and requires long-term treatment. Advocates argue that delays in reimbursement place patients at risk and strain family resources. They have called on the government to expedite the approval process to ensure timely access to the drug.
Health officials have not yet announced a timeline for reviewing the reimbursement request. The protest underscores growing concerns about the availability of treatments for rare diseases in Ireland.
The demonstration took place in the city center, drawing attention from local authorities and healthcare professionals. Organizers hope the pressure will lead to a quicker decision on the drug’s reimbursement.
