REIMBURSEMENT ARRANGEMENTS FOR a drug for patients suffering from Friedreich’s ataxia will be in place from 1 October. 

Last month, the HSE approved funding for the drug called Skyclarys, which has been shown to help alleviate the effects of the neuromuscular disease. 

A HSE drug group first recommended against funding the treatment, which costs €288,000 per patient per year.

The HSE then said its senior management team “took account of a substantially improved financial offer made in recent days by the company Biogen to the HSE arising from intensive discussions”.

Fianna Fáil representatives including TD Pádraig O’Sullivan and senators Teresa Costello and Anne Rabbitte welcomed news that reimbursement is to be in place from 1 October. 

“For people living with Friedreich’s Ataxia and their families, this has been an incredibly long and difficult wait,” said O’Sullivan.

“The approval in August was a hugely important step, but families understandably and rightly wanted to know when that decision would translate into access to the treatment,” he added.

Costello meanwhile remarked that there has been “a significant amount of work behind the scenes to get us here, and the 1 October date finally gives families something concrete to plan towards”.

“For people living with a progressive condition, every month matters,” she added.

Elsewhere, Rabbitte said the “focus now must be on ensuring the administrative arrangements are completed and reimbursement can commence as smoothly as possible from 1 October”. 

Independent TD and Minister of State Seán Canney also welcomed the development.

He said that the HSE has been “progressing the administrative and logistical arrangements needed to enable reimbursement as soon as possible”.

“This is an important update for people with Friedreich’s ataxia and their families who have been waiting for access to this treatment,” he said.

“The HSE is working to have reimbursement arrangements in place from 1 October, and I hope the remaining processes can now be completed as quickly as possible.”

In a statement to The Journal, the Department of Health said that this is a matter for the HSE.

The HSE meanwhile has been approached for comment.

-With additional reporting from Diarmuid Pepper