First, I want to pay tribute to the parents and families of young boys with Duchenne muscular dystrophy who have campaigned for access to givinostat. I commend them for their work, and I also acknowledge the work of colleagues in this House, such as Senators Teresa Costello and Anne Rabbitte, and Deputy Pádraig O'Sullivan, for their work in driving this from a parliamentary perspective. I also acknowledge the Taoiseach and the Minister for Health for their engagement as well. Many people in the House today have already spoken about the positive news that we got regarding givinostat. However, we are still waiting for that good news when it comes to skyclarys in relation to Friedreich's ataxia. This something that the Government and the HSE must prioritise, particularly its corporate pharmaceutical unit because, as other Deputies have said, time is something that these families do not have in abundance, and we need to ensure that these types of medications are in the hands of families to ensure that they can limit the impacts of these particular rare diseases. One thing that frustrates most people is the process and the time that it takes. We welcome the review into how rare diseases are dealt with. Deputy Barry Ward has already spoken about the need for a single European market when it comes to accessing drugs for rare diseases, and it is something that I was going to speak about. It makes sense. We are a small nation with a population of just over 5 million people and a small market to these pharmaceutical companies, but when we combine that with all of Europe, particularly when a lot of these drugs are being approved from European bases, we need to use that strength in numbers to ensure the access for people with these rare diseases. There is a bigger issue in Ireland when it comes to access to drugs. The long-term illness scheme has not been updated since the 1970s. I appreciate the costs that are involved in this, however, if we look at permanent anaphylaxis, for example, young children and adults who need access to EpiPens cannot get them. This is something that we really need to review, particularly when it comes to long-term illnesses. We need to review how people with rare diseases, and people with diseases that are not that rare, access drugs in this country.

Sentiment score: 0.19