Demonstrators gathered in Dublin city centre on Sunday, urging the HSE to approve reimbursement for Skyclarys, a drug that studies suggest could slow the progression of Friedreich’s Ataxia by up to 50%
Friedreich’s Ataxia campaigners protest in Dublin to push for Skyclarys approval in Ireland(Image: Sam Boal/Collins Photos)
Protesters took to the streets of Dublin city centre on Sunday, demanding that the HSE approve reimbursement for Skyclarys, a medication used in the treatment of Friedreich’s Ataxia.
This follows a decision by the HSE Drugs Group to recommend against covering the cost of the drug, with the committee citing concerns over “limitations and uncertainties” surrounding the medication’s effectiveness and its current pricing. The recommendation is set to be reviewed by an HSE senior management team, which will deliver a final ruling on Tuesday, August 25.
Friedreich’s ataxia is a rare, progressive neuromuscular condition that affects approximately 200 people across Ireland. While there is currently no cure for the disease, which leads to nerve damage, muscle weakness and loss of mobility, the drug Skyclarys has demonstrated encouraging results in slowing its progression by as much as 50%.
Despite this, the treatment remains financially inaccessible for patients in Ireland, as the HSE has yet to agree to cover its cost, leaving affected families in an agonising state of uncertainty, reports the Irish Mirror.
Campaigners gathered at the Garden of Remembrance in Dublin on Sunday afternoon to demand access to Skyclarys for those living with Friedreich’s Ataxia in Ireland. Those involved in the demonstration are urging the Government to step in and approve funding for the treatment, warning that further delays could prove life-changing for those affected.
Campaigners are calling on the HSE to approve reimbursement for Skyclarys, a drug used to treat Friedreich’s Ataxia(Image: Sam Boal/Collins Photos)
Families impacted by the condition have vowed to continue campaigning for access to Skyclarys, in the hope that their efforts will bring about change before further lives are lost.
In a statement issued to RTÉ last week, the HSE said its Drugs Group had “considered an assessment from the National Centre for Pharmacoeconomics which found that while there is some evidence that this drug may slow disease progression in Friedreich’s Ataxia, that there remain limitations and uncertainties associated with the available clinical efficacy data”.
It continued: “They also concluded that the current price was substantially above the level typically regarded as cost-effective in Ireland having regard to the limited efficacy of the drug.”
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