Vincent P Martin (Green Party) | Oireachtas source

The Minister of State, Deputy Chambers, is welcome to Seanad Éireann. Friedreich's ataxia is a rare, progressive, life-limiting neuromuscular condition. This disease was first recognised in 1863, and after many decades of research, the first and only treatment called omaveloxolone has recently been discovered. It can slow progression of this illness by 50%. I commend the groundbreaking work of Reata Pharmaceuticals, Texas, on delivering this cutting-edge medication.In the US where it has been approved it gives a precious lifeline to those suffering from Friedreich's ataxia, but Ireland is sadly a different story. The Irish Pharmaceutical Healthcare Association said last month that Ireland is one of the slowest in Europe to reimburse and make available new approved innovative medicines. I ask the Minister of State to assure me that the Government will give this medication to those who urgently needed without one day's or one hour's unnecessary delay.

When, as is anticipated, the EU approves this drug, based on verified track records, it is expected that the new drug will be readily available within weeks in France and Germany, yet Irish patients fear they will be facing a potential wait of up to two years. We have seen this before. In the past we have seen the Government's initial refusal to fund Orkambi, a vital intervention for suffers of cystic fibrosis. The late Vicky Phelan had to persist and plead for pembrolizumab, a life-saving cervical cancer treatment, to be made available. This was eventually done in exceptional circumstances without EU approval showing that where there is a will there is a way.

A Sallins native Niamh Ní Hoireabhaird, her brother and persons living in my home county in Maynooth and Newbridge are some of the 200 people in Ireland suffering with this rare disease. Niamh Ní Hoireabhaird is clearly a courageous, resilient warrior who wants to speak up for these 200 people. In a recent letter to me she stated:

Dear Senator Martin,

I was diagnosed with Friedreich's ataxia when I was 13, I am now 26 and have been progressively losing my mobility and my independence. A decade ago, I was able to walk without assistance but now I'm a full-time wheelchair-user. I often wonder where I'll be ten years from now.

When this drug was approved in the US, I initially felt hopeful for the future in a way that I have rarely felt since my diagnosis. But unfortunately Senator, that hope quickly faded when I remembered Ireland's atrocious track record for approving and funding rare disease treatments. I'm worried I will have to spend years of my already-limited life campaigning for funding of this drug.

I have constantly been told by officials about the cost of these medicines. What about the cost of a life lived dependent on services of the state? What about the cost of the years we will have to spend pressuring the government to do the right thing.

Let me be clear: This issue Senator, goes beyond this drug. We need a proper and equitable strategy for rare disease treatments. As a member of the rare disease community, I have little faith in this country's ability to care for me, my brother and other Friedreich's ataxia patients. Can you blame me for that? Senator, Please help.