Mary Seery Kearney (Fine Gael) | Oireachtas source

Yesterday there was a protest by those affected by cystic fibrosis. I have no doubt that other Members mentioned it yesterday. A number of people's lives and health outcomes are impacted by the failure of the HSE and the pharmaceutical company to find a resolution in the row on the Kaftrio medication. That is one instance.

In another instance, a product called Ozempic is used for people with type 2 diabetes. It is a weekly injection. Another similar product requires a daily injection. It has also been proven to assist where people have obesity. Over the summer some parents whose children have intellectual disabilities met me and pointed out that it is very helpful in moderating where there are appetite issues. In cases of Prader-Willi syndrome, moderating and self-regulation on appetite are important given all the attendant effects that flow from obesity. However, the HSE mechanisms only allow that to be acquired on a medical card or on the long-term illness scheme in cases of type 2 diabetes. This has been proven worldwide to provide support. However, the parent of a child with an intellectual disability who needs this product will need to pay up to €300 a month for treatment with this drug. That is not okay.

I call for a debate on the regulation of drugs and how drugs are approved to qualify under the long-term illness scheme or to be covered by a medical card. What is that mechanism? Who makes those decisions? Where is the transparency and accountability for that? Real people's lives and medical outcomes are being affected by procedural and administrative issues when we need to get underneath that. A debate in the House will give us the opportunity to hear how prevalent this is and how inhibiting it is to people's lives and health outcomes.