I again raise the issue of rare diseases, which I have raised consistently in the House for the past five years. I have spent the past hour and a half with Senator Costello, who was meeting with parents whose children suffer from Duchenne muscular dystrophy. They received the good news this week that the treatment drug is on its way to the HSE management team for consideration, having been positively recommended for reimbursement. It is a great relief for the families but the victory is bittersweet because they know that every week they lost waiting for the drug over recent years has led to a deterioration in their children's condition. Those parents are not alone in their story. There is a campaign currently under way by parents whose children primarily suffer from Friedreich's ataxia and who urgently require the drug Skyclarys. I understand that matter is at a sensitive stage of negotiations with the HSE and I do not expect the Minister to comment on it.
On the overall picture, the Minister made an important point in his interaction with Deputy Paul Murphy. The Minister is a father and, like me, he understands how difficult it is for parents of children who are ill. No child should have to wait for healthcare but we consistently have a system in this country under which children are waiting. On average, children in Ireland wait 800 days for rare disease drugs. That is in contrast with the situation in other EU and EEA countries. I am not talking about the big countries with the big economies and the big patient cohorts. I am talking about smaller countries, some of them with smaller economies than our own, like Iceland, Luxembourg and Denmark. They are reimbursing drugs at twice and three time the rates we are reimbursing them. We are consistently laggards in the league table when it comes to reimbursement of these drugs.
I commend Senator Costello and the families on their campaign over the past few months. It came to fruition this week and they have achieved the result they want. However, there must be dozens of families at home looking on enviously while they wait for the drug they need to be assessed for reimbursement. It is a cruel and horrible situation for any family to be in. It is inhumane. I am asking for follow-through on the two commitments on this issue in the programme for Government. One relates to the early access scheme and the other is for a review of the reimbursement process as a whole. To my knowledge, action has not commenced on either recommendation. I am hearing about bits and pieces going on but when I talk to clinicians and consultants, they tell me nothing is happening. The Government is a year and a half into its term. The Minister knows as well as I do that anything involving a review or report will take God knows how long. It could take a year, two years or three years, if we are lucky.
I ask the Minister to urgently speak with the Minister for Health to ensure those two commitments in the programme for Government are honoured and prioritised with immediate effect.
