Rare Diseases: Statements Dail Éireann — 2026-06-18 ============================================================ Pádraig Rice (SD), Cork South-Central It is welcome that the issue of rare diseases is on the political agenda. It has been neglected for far too long. In a large part, it is thanks to the advocacy of parents and families as well as political allies within the system here. Members of the health committee, including Deputy O'Sullivan and Senator Teresa Costello, have raised this issue consistently. One of the things I find quite difficult as a health spokesperson is the fact we are constantly hearing from families and individuals who have to come to Leinster House and who have to campaign to get access to medication. We are talking about people who are sick, who have deteriorating diseases and who have limited energy. I do not think that energy or time should have to be spent campaigning, advocating and pushing the political system into reform. It is something we need to reflect on and try to achieve change for people, so that families, young people and people with rare diseases can live their lives to the full and not have to spend their time and energy campaigning and advocating for progress on these issues. Any real reform of services and reimbursement processes would be far more beneficial than anything that is said in this House in terms of statements. That is what is crucially important to families. Last August, the new rare diseases strategy was finally published but it should not have taken seven years for a new strategy to be published. The previous strategy expired in 2018. Such an extensive gap without any guiding services or rare diseases policy is unacceptable and cannot be repeated again. Equally, we cannot afford a repeat of the failure to implement all of the recommendations from the last plan. It is one thing publishing a plan but ensuring it is implemented is something entirely different and the latter should be our focus. We see this across the board. In this State, we have implementation deficit disorder when it comes to many of the State's strategies and plans. Too often, they gather dust on the shelves of Government Departments instead of being implemented in full. I accept that this time around with rare diseases, an implementation oversight group has been established and that is certainly welcome. We need to see an implementation plan published that will outline the necessary actions required to achieve the strategy's recommendations. That must have timelines and funding commitments. That is crucially important for all of our strategies, in that they are time-bound and within the budget and there are the resources and funding to make sure the actions happen. Otherwise, we will not see progress. The programme for Government committed to publishing a new rare diseases strategy and that has been delivered. However, other commitments remain outstanding. The first is a review of the entire reimbursement process. A year and a half into the Government's term, that work is just beginning. I understand the tender details were only approved at the beginning of this month. We were told that this review, once commenced, would take about six months but given past performance, there are serious question marks on the timeline. Mazars, which carried out the previous reimbursement process review, was tasked with that job in 2019 but it was 2023 - four years later - before the long overdue report was published. Rare Diseases Ireland has raised concerns about the next review, given how little change the last review brought about. I can completely understand these concerns. Rare disease patients have already waited long enough and many do not have the luxury of time. More immediate action is required - not more delays. The current reimbursement process is failing patients, in particular patients with rare diseases. They should not have to campaign tirelessly to progress decisions on orphan drugs or need to lobby Government and Opposition to reform the reimbursement process. This is a heavy burden which the rare disease community should not have to carry. Take for, example, the children who have Duchenne muscular dystrophy. Last week, they finally received the good news that the HSE drug group recommended givinostat for reimbursement but they have had to campaign tirelessly and fight to get to that stage, all the while watching the symptoms progress. --- Source: Houses of the Oireachtas. Licensed under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/). The Official Report is revised after first publication; the fetch timestamp below identifies the version quoted. Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-06-18/debate/main Retrieved: 2026-08-27T06:54:51+00:00 Sitting date: 2026-06-18