Local politicians have welcomed the HSE’s decision to fund Skyclarys for people living with Friedreich’s ataxia.
Politicians from both government and opposition parties backed a campaign by activists who said that the drug, more widely available to other people living with the condition in Europe, was not being funded in Ireland.
Politicians have noted that the HSE’s process for approving drugs is slow compared to other European countries, and delays in the context of a progressive ailment like Friedreich’s ataxia are a luxury that families, carers and patients can not afford.
Sinn Féin leader Mary Lou McDonald said that campaigners had fought a multiple-year battle to force the HSE’s hand on the issue.
The Dublin Central TD said that the campaigners showed “huge bravery” but by the same token “should never have had to battle so hard.”
“It is critical that there are no further delays,” she said.
“For two years, those living with Friedreich’s Ataxia have campaigned day and night to ensure that their doctors can have access to Skyclarys, a treatment which is available in many other countries.
“Two years is a very long time, and there has been no pause in the progress of this disease. Every delay has had real consequences,” the Sinn Féin TD said.
“I have met so many of those living with Friedreich’s ataxia. They are remarkable people who have shown huge bravery and resilience and continued to fight despite being knocked back, being given the run around and having to campaign just to be listened to.
McDonald said, “this was always about choice and ensuring that doctors have access to all available medical treatments; that was not too much to ask for.”
“The government need to ensure that there are no further delays and this decision is actioned quickly.”
Fellow Dublin Central TD and Labour health spokesperson Marie Sherlock said the whole affair is a reminder of how languid Ireland’s healthcare system is.
“People living with rare diseases, who are already dealing with debilitating and life-changing conditions, should not have to endure an excruciating process simply to access potentially transformative medicines.”
The Labour TD said, “we need a specific and more compassionate approach to providing access to medicines for people with rare diseases.”
“There is also a much bigger question about how Ireland negotiates with pharmaceutical manufacturers on high-cost medicines,” she noted.
“The government must examine how we can secure fairer prices and faster access, including through greater cooperation at EU level. This decision is hugely welcome, but it must also be a catalyst for a better approach,” Sherlock said.
Fianna Fáil Senator Teresa Costello said the decision was the “right” one, and one that around 200 patients and their families have waited for.
“The stress that comes with campaigning while managing a progressive illness, work, families, and daily life cannot be underestimated,” the Fianna Fáil Senator said.
“Families should never again feel they have to take to the streets or bare their souls to be heard; their willingness to do what they did is the reason this decision has been made.”
Costello and her Fianna Fáil colleagues stated “this decision should never have taken as long as it did.”
“Patients waited through an initial HSE Drugs Group recommendation against reimbursement, a deferral for further review, and months of uncertainty, while a progressive and life-limiting condition did not wait with them.”
Fianna Fáil, who controlled the health ministry in the last government, stated “Ireland’s system for approving rare disease drugs needs to change.”
“It is slower, more bureaucratic and more resistant to using its own discretion than our European neighbours. We will continue to push for reform of how Ireland assesses and approves treatments for rare conditions,” Costello said, alongside junior minister Christopher O’Sullivan.
“This decision is significant for the patients and families who campaigned for it. We thank them for their persistence,” they said.