The HSE’s senior management will decide on Tuesday whether a treatment for a rare genetic disorder, Friedreich’s ataxia, should be funded for Irish patients.The disease causes progressive damage to the nervous system, and individuals with the condition have a shorter than average life expectancy.In February 2023, the drug omaveloxolone, branded as Skyclarys, was approved in the US for the treatment of the disease. Europe followed suit 12 months later.Skyclarys is not a cure, but patients and advocates say it has the ability to slow the progression of Friedreich’s ataxia by up to 55 per cent.Last December, the National Centre for Pharmacoeconomics issued an assessment on the “cost-effectiveness” of Skyclarys. It recommended that the drug not be considered for reimbursement by the Health Service Executive (HSE), stating it would cost about €280,000 per patient annually.On July 14th, the HSE Drugs Group did not recommend the drug for reimbursement and referred the application to the Rare Diseases Technology Review Committee “to seek further input”.On August 11th, following the committee meeting, the HSE Drugs Group recommended that the drug should not be reimbursed. It stated the estimated cost of the drug was too high, as well as questioning the effectiveness of the treatment.This decision was then put forward to the HSE’s senior management team, who will make the final decision on reimbursement after a meeting today.It is understood communication between the health service and drug manufacturer Biogen continued after the recent drugs group decision, with the aim of securing access to the treatment for Irish patients.About 200 people in Ireland are living with the disease, with many taking part in a public campaign calling for the drug to be reimbursed.On Monday, Rare Disease Ireland urged the HSE to continue negotiations on the price of Skyclarys, in the first such intervention the group has ever made.Representative groups have called for political intervention, but Government officials maintain the process is non-political and independent of Leinster House.