Darren J. Prior
The ataxia community in Ireland received great news last Tuesday (25th) that the HSE is going to allocate funding so that people with Friedreich’s ataxia in Ireland can access the drug Skyclarys.
There are estimated to be up to 400 people who have some form of ataxia in Ireland, and Friedreich’s ataxia is the most common genetic form of the condition.
A march and demonstration was held in Dublin city on Sunday, August 23, organised by Ataxia Foundation Ireland.
It was well attended and was described as “a fantastic effort by everyone” for the ataxia community and their supporters in Ireland. Just days later, the HSE made its decision on Skyclarys.
Speaking to Dublin People, Maureen Sweeney, Head of Operations at Ataxia Foundation Ireland, welcomed the HSE decision.
“We campaigned very hard. We had a lot of public interest.
“The politicians were very slow to get behind us initially, but they did get on board. It was spread throughout the country.
“Everybody in every county did their part, which was fantastic.
“It was a very tough campaign. But the people most affected were very happy to speak out and advocate for themselves, and I think that was one of the reasons why we were so successful.”
In September, Ataxia Foundation Ireland will mark their 10th anniversary.
As well as marking and celebrating its 10-year anniversary in September, according to Maureen, she and AFI still have a lot of work to do in the upcoming weeks and months because ataxia is still not recognised under the Long Term Illness Scheme.
“It is because it is so rare it is not recognised,” according to Maureen.
“So a lot of people run into problems with their OTs and their speech therapists getting funding for speech therapy, wheelchairs and everything because it is not recognised.
“And we need the Government to address that and get us on the Long Term Illness Benefit and see what, you know, we need.”