We use Google Analytics to see which pages are read and how the site is used, so we know what to improve. This only runs if you accept. See our privacy notice for details.

Dáil
‹ Ceisteanna ar Pholasaí nó ar Reachtaíocht - Questions on Policy or Legislation

Access to Skyclarys treatment

Summary

Thomas Gould pleads for Skyclarys for Paudie Coad, who has Friedreich’s ataxia, describing the family’s losses and the drug’s potential benefits. The Taoiseach expresses sympathy and says discussions with the company and Health Minister are continuing.

Most days, the Taoiseach and I fight and argue about policy and politics. Today, is not one of those days. I come in here today to speak on behalf of Craig Coady. He had a family, a wife and two sons. His wife now is in long-term hospitalisation. She has Huntington's disease. They buried their 13-year-old son Rory, who died as a result of Friedreich's ataxia. Their second son Paudie, who is 15 years old, is dying of the same disease. Skyclarys is not a perfect medicine. It is not a cure, but it has been shown repeatedly to have clinical benefits in slowing the disease. I am asking that under the compassionate access programme, as happens in France, this drug be provided to Paudie.

Comment on this
Verona Murphy An Ceann Comhairle Independent

Thank you.

Comment on this

Can I just say this?

Comment on this
Verona Murphy An Ceann Comhairle Independent

No.

Comment on this

I spoke to-----

Comment on this
Verona Murphy An Ceann Comhairle Independent

The Taoiseach will respond.

Comment on this

I spoke to Craig this morning. He is pleading from his heart that the Taoiseach and the Minister for Health see to it that this drug is provided.

Comment on this
Verona Murphy An Ceann Comhairle Independent

Deputy Gould is really making it difficult for other people.

Comment on this

I thank Deputy Gould for raising the issue. He is correct in that this is not an issue that anybody wants to have a dispute over. Deputy Pádraig O'Sullivan raised it this morning. I spoke to the Minister about the case last week. My understanding is that there are ongoing interactions with the company involved. There has been a health technology assessment and so on. This has proven problematic.

My heart goes out to the Coady family. They have lost their son Rory. The situation is very challenging for Paudie unless he can get access to this drug. I will work with the Minister to see what we can do to try and help the family. I appreciate the Deputy raising the matter in the manner in which he has raised it.

Comment on this