Fine Gael Public Representatives meet with Biogen

Members of the Fine Gael parliamentary party met with Biogen, the biotechnology company which manufactures Skyclarys, a disease-modifying drug for Friedreich’s Ataxia.

Fine Gael Parliamentary Party Chairperson, Deputy Micheál Carrigy, who has met with Biogen previously, met with representatives from the company again this afternoon, along with his colleagues Deputy Catherine Callaghan, Deputy Seán Kyne, Deputy David Maxwell, Deputy Noel McCarthy, Deputy John Paul O’Shea and Senator Noel O’Donovan.

Deputy Carrigy explained: “We each have had a lot of contact with patients affected by this rare disease, as well as their families and advocacy groups and understand that the HSE’s drug group’s recommendation not to cover the cost of Skyclarys is devastating for them. 

“We are committed to continuing to represent them to all stakeholders and today’s meeting with Biogen will, we hope, assist progress between the company and the HSE.

“We understand there is a statutory process underway and we also understand that other EU countries, like Belgium, Sweden and the Netherlands have publicly acknowledged real challenges with the efficacy and impact of this drug and its very high price, while other countries have approved it. 

“Our objectives for this meeting were two-fold; to appeal to Biogen to engage fully with the HSE on what is possible to get patients access to this drug. We have also called on Biogen to give consideration to developing a Compassionate Access Programme for patients and for this to be done in advance of the next HSE senior management meeting on August 25th. 

“Our job as public representatives is to engage, advocate and try to help people at often the most harrowing and stressful periods in their lives. This is our greatest responsibility, and we do that with genuine care and concern and a desire to do all that we can for our constituents.”