TÁNAISTE SIMON HARRIS has said he hopes today’s meeting of senior management of the HSE will bring “clarity” to patients suffering from Friedreich’s ataxia.

The HSE will decide today whether to fund the provision of a drug called Skyclarys, which has been shown to help alleviate the effects of the neuromuscular disease. 

In recent weeks, a HSE drug group recommended against funding the treatment, which costs €288,000 per patient per year.

It is manufactured by US biotechnology company Biogen.

The issue has become a political one in recent weeks, with opposition politicians calling for the HSE to approve the funding of the drug. 

Taoiseach Micheál Martin met families affected by the rare genetic disorder last week.

“I know that this is an extraordinarily difficult, anxious, and worrying time for patients, for families, for the communities where patients live,” Harris said this morning.

“I do hope that today can bring clarity to this issue, clarity for patients, clarity for families, clarity for doctors.”

Patients have argued the decision to fund the drug should not be made by the HSE but instead by the Department of Health. 

Harris said the process for making such a decision is set out in law.

“It is an independent statutory process. It is important that the process is robust,” he said.

He added, “with full empathy, full respect,” that while Skyclarys is the drug in question today, “there’ll be other patients and other new and innovative drugs, and there’ll be a need for that too”.

“So having a robust process in place that gets the best outcome possible to ensure as many of our citizens as possible can have access to innovative medicine is important.

He also said there is “a broader conversation to be had” about the development of new treatments in general these days. 

“We’re living through a time, which is a really positive thing, of lots of new innovations, lots of new drugs, lots of new medicines, perhaps at a scale we’ve never seen before.

“I think a broader conversation about how Ireland and how the European Union perhaps funds that and interacts with that is worth having.

“But today, in relation to the patients hoping for good news on Skyclarys, I know how anxious a day it is, and I really hope that later today there’ll be clarity brought to the matter.”