There is welcome news for the Coady family in Buttevant, with the HSE today approving reimbursement of Skyclarys following a substantially improved commercial offer from pharmaceutical company Biogen.
The decision means 16-year-old Paudie Coady, one of around 200 people living with Friedreich’s ataxia in Ireland, will now have access to the treatment his family has been campaigning for.
The announcement has been welcomed by campaigners and public representatives, with particular praise for the families who continued to push for access to the treatment following the HSE Drugs Group’s initial recommendation against reimbursement.
Independent TD Ken O’Flynn described today’s decision as a “victory that belongs to the families”, paying tribute to those who campaigned publicly and stood up for people living with Friedreich’s ataxia.
He specifically praised Niamh Ní Hoireabhard, Emily Felix and Aoife Gavan, who led Sunday’s demonstration in Dublin, as well as everyone who shared their stories and continued to campaign.
O’Flynn also paid particular tribute to Buttevant’s Craig Coady, who has been at the centre of the campaign while fighting for access to treatment for his 16-year-old son Paudie.
He said Craig “played a vital role in all of this”, adding that his work and determination were “central to getting us over the line”.
John Paul O’Shea TD also welcomed the announcement, describing it as “Excellent news coming through this afternoon…”.
The development follows a significant change in the HSE’s position.
Earlier this month, the HSE Drugs Group recommended that Skyclarys should not be reimbursed by the State, essentially on cost grounds.
However, Biogen subsequently made a substantially improved commercial offer to the HSE.
The HSE Senior Management Team met today, August 25, to consider the revised commercial terms and decided, “on balance”, to approve reimbursement for Skyclarys.
In a statement, the HSE said Biogen had “moved substantially from its previous position” and expressed its appreciation for the company’s “flexible and constructive approach”.
The decision means Skyclarys will now be reimbursed for eligible patients living with Friedreich’s ataxia in Ireland.
The National Centre for Pharmacoeconomics had previously recommended against reimbursement, citing concerns around cost-effectiveness and clinical effectiveness.
Skyclarys is the first approved treatment for Friedreich’s ataxia and is approved for use in the European Union. The treatment can slow the progression of the rare genetic condition, which progressively affects the nervous system, mobility and independence.
For the Coady family, today’s decision comes after an intensely difficult period.
Paudie’s father Craig previously lost his son Rory to Friedreich’s ataxia last year. Since then, he has continued to care for Paudie while campaigning for access to Skyclarys and the opportunity for his son to benefit from treatment while he still can.
