The Government and HSE have been urged to approve Skyclarys after a protest was held in the capital yesterday.
Patients, families and campaigners gathered in Dublin yesterday to demand access to Skyclarys, the only licensed treatment for Friedreich’s Ataxia, in a demonstration organised ahead of a critical decision by the HSE this week.
The protest brought together people living with the rare, progressive neurological condition, along with their families, to publicly appeal to Government and health officials to reverse course on reimbursement for the drug, which has already been approved by the European Commission and is available in several other European countries.
Independent Ireland Leader Michael Collins TD has since made a direct appeal to the Taoiseach, the Tánaiste, Minister for Health Jennifer Carroll MacNeill and the HSE to approve the treatment, saying the scenes and testimonies from patients and families at yesterday’s demonstration should leave nobody in any doubt about the urgency of the decision now facing the HSE.
“Not asking for special treatment”
Approximately 200 people in Ireland live with Friedreich’s Ataxia, a rare inherited condition that progressively damages the nervous system, affecting movement, coordination and, over time, heart function. There is currently no cure, and Skyclarys is the only treatment licensed to slow its progression.
Deputy Collins said the families who took part in yesterday’s protest were not seeking anything beyond what patients elsewhere in Europe already have.
“Yesterday, families and patients once again had to take to the streets and publicly plead for access to a treatment that could slow the progression of this cruel and relentlessly progressive disease,” he said.
“These are people who are not asking for special treatment. They are asking for the opportunity to access a medicine that is already approved and available in other European countries.”
He said the stakes for those affected could not be overstated. “For them, this is not an abstract debate about budgets, cost-effectiveness or administrative procedures. Every week and every month matters because this disease does not wait for the HSE.”
The protest comes just days before the HSE Senior Leadership Team is due to make a final decision on reimbursement, on Tuesday, 25 August. The HSE Drugs Group has already recommended against reimbursing the drug, but Collins stressed that this recommendation is not the final word.
“Yesterday’s demonstration was a powerful reminder of the human cost of continued delay. Families spoke about watching their loved ones deteriorate and about the fear that time is running out,” he said.
“The HSE Drugs Group has recommended against reimbursement, but that recommendation is not the final decision. The HSE Senior Leadership Team is due to make that decision on Tuesday, 25 August.”
Collins called on senior figures in Government to intervene directly. “I am calling directly on the Taoiseach, Tánaiste and Minister for Health Jennifer Carroll MacNeill and the HSE to look beyond spreadsheets and bureaucracy and look directly at the people whose lives are being affected.”
Central to the standoff has been disagreement over the cost of the treatment. While the HSE has cited cost as a barrier to reimbursement, Collins noted that the manufacturer disputes the figures that have been reported publicly.
“Skyclarys has been approved by the European Commission and is available in a number of other European countries. The Rare Diseases Technology Review Committee has also provided positive evidence on the benefits of the treatment,” he said.
“We have heard the arguments around cost. We have also heard that the manufacturer disputes the figures being publicly reported by the HSE. That makes it even more important that every avenue is explored to reach an agreement and get this treatment to patients.”
Collins said Government figures, including the Taoiseach, had previously signalled support for getting the drug approved, and he is now calling for that commitment to be honoured.
“The Government has repeatedly told families that it wants to get Skyclarys over the line. The Taoiseach himself previously said he wanted patients to have access to the treatment as quickly as possible.
“Now is the time to turn those words into action.
“I am asking the HSE Senior Leadership Team to approve reimbursement for Skyclarys, and I am asking Minister Carroll MacNeill to do everything within her power to ensure that happens.”
Paying tribute to those who took part in yesterday’s protest, Collins said families should not be left to carry the burden of campaigning while dealing with a progressive illness.
“Yesterday, the families made their case with courage and dignity. They should not have to keep protesting, lobbying and begging for a treatment while their condition continues to progress.
“The Taoiseach, Tánaiste, Minister and the HSE must do the right thing,” he said.