Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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8. To ask the Minister for Health if he will appoint a HSE patient liaison team official with a special focus on rare disease patients; and if he will make a statement on the matter. [26591/23]

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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Will the Minister appoint a HSE patient liaison team official with a special focus on rare disease patients?

Stephen Donnelly (Wicklow, Fianna Fail)
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I thank the Deputy and acknowledge his ongoing work on behalf of patients and families with a rare disease diagnosis.

We are fully committed to doing everything possible to assist people living with a rare disease and to support their families as well. Good progress was made under the national rare disease plan, including the establishment of a national clinical programme for rare diseases and, critically, a national rare disease office. While there is currently no HSE patient liaison team official with a special focus on rare disease, the national rare disease office established the national rare disease information line which provides current and evidence-based information on rare conditions and signposts to available expertise in Ireland and across Europe.

Patients can seek information, advice and support through the patient advocacy service. It is a free and confidential service, independent of the HSE, providing information to support people who want to make a complaint about their experience or give feedback on their experience in an acute hospital. Then we have the Your Service Your Say process as well. Responding effectively to feedback and learning is essential in providing very high quality services. As such, the patient liaison officers referred to in the Deputy's question are located in each hospital group and community health organisation to support patients, service users and staff in the implementation of the complaints management process.

In February I announced a plan to develop a new national rare disease plan, in line with the commitment in the programme for Government. Work for the new plan has commenced and, critically, the voice of patients and families will be central to the development of this policy. The measure the Deputy is proposing through his question is one that we will consider through this forum. A patient liaison officer with a special focus on rare diseases can be put in place within the HSE potentially as part of the new plan.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I welcome that the Minister took the initiative to publish the Mazars report recently because it was sitting there for an awful long time. I acknowledge and welcome that. The Minister is quite aware of its contents and what it proposed. There are various steps being taken on the positive front on foot of that, including increasing transparency through an online portal that will keep people informed about the progress of the drug in question in terms of reimbursement. The problems still prevail in respect of waiting times for reimbursement, however. I also welcome the fact that the Minister has commenced a review of the rare disease plan. It is much needed. I appreciate that he has said that through that process he will consider the appointment of a specific rare disease officer. That is also something I would welcome. Initially when that Mazars report was commenced and recommended by the Oireachtas Joint Committee on Health, it was to have a specific focus on orphan medicinal products. Can we go back and revisit that?

Stephen Donnelly (Wicklow, Fianna Fail)
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Starting, if I may, with the patient liaison, the Deputy and I had a really positive and useful meeting with patients and families who are dealing with rare diseases. The point they were making was that there is all manner of frustrations, blockages and complications in the system and they would really benefit from having someone within the HSE who engages with them and can take on board what may be fairly minor improvements that would make a big difference to the children, adults and families involved. In the first instance, I want to continue that conversation as part of putting this new plan together. I am certainly very open as per the Deputy's question to having a specific point person. Because these are rare diseases and the numbers of people involved are so low, the patients and families do not have the same share of voice and representation, let us say, as oncology patients or others. That is something I am very open to. I will answer the Deputy's second question when I come back.

Pádraig O'Sullivan (Cork North Central, Fianna Fail)
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I appreciate that the Minister is considering that request in the process that is to come. If I can go off on a bit of a tangent around the greater reimbursement process, does the Minister have any proposals in terms of allowing early access to drugs? Is that being considered by his Department or by himself? Will he be doing any review or report on it? Previously I spoke to the Minister about risk-sharing initiatives that could be done with partners in industry. Is that being considered by the Department at present? I spoke to the Minister yesterday about the report in The Lancetthat was published earlier in the month. It shows that time lags here in Ireland are considerable compared to our EU counterparts. Could the Minister give us an update on any other initiatives, be they legislative or non-legislative? I am probably more interested in any non-legislative measures that the Minister might be considering taking, if he could give us an update specific to orphan drugs.

Catherine Connolly (Galway West, Independent)
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Before the Minister responds, Deputy Durkan wants to come in briefly.

Bernard Durkan (Kildare North, Fine Gael)
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In support of my colleague, I want to ask the Minister if any measure is taken of the number of patients reporting with heretofore unidentified conditions that might come under the guise of rare diseases, on a monthly or yearly basis, in order to reassure patients.

Stephen Donnelly (Wicklow, Fianna Fail)
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I will have to come back to Deputy Durkan on that. With regard to Deputy Pádraig O'Sullivan's question, the short answer is "Yes". We can do more and we can move faster. I believe we are now moving faster. The article in The Lancetreferenced by the Deputy quite rightly looked at Ireland's slower response historically. A lot of money has been put in place in the last three years. As the Deputy will be aware, 127 new drugs or new uses have been approved and 50 of them are cancer drugs. There is a lot going on. Can we do more? Yes. Can we be more transparent? Yes. Ultimately patients and clinicians want to know where any drug is in the process. That is really the benefit of implementing the Mazars report. To the Deputy's question as to whether we need to legislate for that, we do not. That is just about getting on and putting a more transparent process in place where everyone can see where the drugs are in the process.