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

William Jonathan Moore treatment

Summary

Deputy Newsome Drennan raised the case of four-year-old William Jonathan Moore, who needs treatment for Duchenne muscular dystrophy in the United States. The Taoiseach said he would examine the case, noted current guidelines usually cover the EU and UK, and said if treatment is only available in the US something should be done.

I raise the case of a young William Jonathan Moore, a four-year-old boy from Kilkenny who has been diagnosed with a life-threatening condition, Duchenne muscular dystrophy, DMD. This condition is so rare that no treatment is available in Ireland. William has been accepted at the Boston Children's Hospital for treatment. However, as I am sure the Taoiseach is aware, the treatment abroad scheme does not currently cover the United States. The State has a duty to provide care to children such as William to be treated in Ireland or abroad. At the moment, William's future is dependent on the goodwill of the public via a GoFundMe page for treatment and local fundraisers. We have had bespoke arrangements in the past for children with rare conditions, where the only treatment options were in the United States. I am asking that the Minister for Health engages with the HSE and William's family to ensure that they are supported to get the treatment and that the Department works to develop support for any future cases of DMD.

Comment on this

I thank the Deputy for raising the case of William Jonathan Moore.

Normally, the treatment abroad section is very responsive to cases. I understand that the guidelines stipulate treatment should be within the European Union, although with the common travel area with Britain, we also send people with rare conditions to get treatment in the UK. If the Deputy can send me the full details of the case, I will certainly examine it. The child should get-----

Comment on this

It is only available in the United States.

Comment on this

If it is only available in the US, we should do something about that. I will come back to the Deputy about it and will talk to the Minister for Health.

Comment on this