Colm Burke (Fine Gael) | Oireachtas source

I welcome the confirmation from the Minister for Health today that the company that manufactures Spinraza has agreed to make further submissions to the HSE. Spinraza is a very important drug for children with spinal muscular atrophy. I understand this drug could assist the small number of people affected. I know the HSE has previously turned down the submissions made by Biogen that the drug be covered by the drugs payment scheme because of the price demanded by the company. I understand it would cost €600,000 per patient in the first year and €380,000 per patient for each year thereafter. It is helpful to hear that the company is now prepared to make further submissions. Hopefully, the HSE will take those on board and this drug can be approved because it is important for patients and their parents that the medication they require is made available to them. It is also important that the drug company acts in a reasonable manner regarding the price in order that the budget is not cut elsewhere if the drug is included in the scheme. That time has been extended by the HSE to allow the company to make final submissions is a welcome development. Hopefully, agreement can be reached following those submissions.