A WEST Cork woman who was at the forefront of a national campaign to have Skyclarys reimbursed for patients with Friedreich’s Ataxia (FA) said she feels let down yet again by the health system.
Emma O’Shea (26) won her fight for the life-changing drug to be reimbursed after the HSE reversed an earlier decision in late August. But it is now feared that it could take a year before all FA patients have access to Skyclarys due to lack of capacity at the national clinic.
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Emma’s older brother Timmy sadly died of FA in 2016 at the age of 29. And just weeks ago an estimated 400 people attended a public meeting in Kealkill NS, where Emma went to school, to back her and the 200 others who lobbied for Skyclarys.
Emma took her fight one step further and met with Taoiseach Micheál Martin asking him to intervene. But she said she has heard nothing since the decision to reimburse the drug, even though it is due to be prescribed for patients from October.
She told the Southern Star: “We have received very little information. I was so naïve to believe this would be the easy part, after months of hard work put in by myself and my fellow advocates.
“We shared very private personal and family stories, put ourselves out there to the public. We fought and we won, got Skyclarys reimbursed, but for what? More delays, more failures by our health system?
“All we’re asking for is a basic need, it shouldn’t be this difficult.”
Independent Ireland leader Michael Collins has backed Emma and other campaigners in their fight. Earlier this week his party colleague, Cork North Central TD Ken O’Flynn, called on Health Minister Jennifer Carroll McNeill to fund extra capacity at the Combined Ataxia Clinic at Tallaght University Hospital immediately.
Friedreich’s Ataxia Research Alliance (FARA) Ireland has now written to the minister to say patients cannot get an appointment with their neurologist in time to be prescribed the drug, even though many have already had the required blood tests done by their GP.
At a meeting with FARA Ireland on September 22, neurologists and administrators at Tallaght said that if the service stays as it is, not all patients would be prescribed the treatment until June 2028. Even with temporary measures, including cancelling other clinics, the rollout is expected to run until late February 2027.
Deputy O’Flynn said: “In August we celebrated a hard won victory when Skyclarys was finally approved. Families had waited years for that day. Now they are being told they may have to wait until 2028 to actually get it. That is not acceptable.
“Friedreich’s Ataxia is a progressive condition. It takes a little more from people every month. A treatment that sits on a shelf because there is no appointment to prescribe it helps nobody.
“The staff in Tallaght have been running this clinic without proper funding for years, and they have been honest about that. The problem is not their commitment. It is a failure to fund the service needed to deliver a treatment the State has already agreed to pay for.”
The Cork TD has tabled questions for the Health Minister calling for dedicated resources to be put in place immediately, to allow for every eligible patient to be seen and prescribed by December 31.
“Approval was the first step. Now it has to reach the people it was meant for,” he said.
Deputy O’Flynn paid tribute to FARA Ireland and its chairperson Noel McGrath for continuing to advocate for patients and families.
