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
‹ Order of Business

Respreeza access for alpha-1 patients

Summary

Deputy Butler warned that alpha-1 patients face uncertainty over continued access to Respreeza. The Taoiseach said it was an important patient issue and undertook to have the Minister reply directly.

Page 64 of the programme for Government refers to driving down costs to provide new treatments, drugs, etc. and asserts that the Government will examine opportunities to leverage purchasing power. As the Taoiseach may be aware, time is running out for the 21 alpha-1 patients who are receiving Respreeza on a compassionate basis from CSL Behring. The patients, some of whom started the trial ten years ago, were receiving the drug on a month-to-month basis. Last week, they were informed that it would only be available to them on a week-to-week basis with no guarantee for the future.

I appeal to the Taoiseach to ensure that this life-saving drug is made available without delay. He oversaw the provision of Orkambi for cystic fibrosis sufferers. Twenty-one people are on this trial and a further 40 are awaiting it. Ensuring that this is handled would be a great use of his time in the next few weeks.

Comment on this
Enda Kenny The Taoiseach Fine Gael

This is an important issue for the patients and the families involved. It is not just a question of general legislation. I will have the Minister respond directly to the Deputy.

Comment on this

I thank the Taoiseach.

Comment on this