Mary Seery Kearney (Fine Gael)
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I appreciate that the Minister of State is here at very short notice. I acknowledge that the Department of Health has emailed myself, and Senators Gavan and Conway, to explain that the Minister for Health is not available. Issuing an email is an improvement on the usual lack of communication.

I am here to discuss an issue that pertains to a small group of people whose quality of life is very much affected. I will quote from a letter written by a person with cystic fibrosis, CF:

I am a 36 year old CF patient and received a double lung transplant in May 2006. I was 19 years old at the time. I was a patient of Crumlin Children's hospital until January 2006 and was transferred over to St. Vincent's hospital for a short few months until my transplant where my care was taken over by the Mater Hospital.

In recent years, this lady's quality of life has seriously deteriorated. She has had multiple hospital admissions. She has lost a serious amount of weight. She suffered from bronchiolitis obliterans syndrome, which also deteriorated her lung function. She mentions in her letter that she is "currently able to manage on my current [lung capacity] level of around 25%", but it is difficult because she has a young child.

In October 2022, her consultant suggested that she would be a really good candidate for Kaftrio because it would address the issues that affect her quality of life. She sent a letter to the professor who is over all of this asking that they consider prescribing her Kaftrio at the centre in the Mater Hospital. To date, there has been no progress on this issue aside from the news that there may be a committee established to look into similar cases. Such a situation is extremely frustrating, seriously reduces her quality of life and detracts from her ability to engage in normal family life.

I raised this issue, at her suggestion, with Cystic Fibrosis Ireland, CFI. During our conversation, representatives of CFI told me that they understand that the HSE and the national clinical programme for cystic fibrosis have agreed to appoint a consultant for post-transplant cystic fibrosis care, particularly among people who have had a double-lung transplant in the Mater Hospital. CFI is concerned that there has been a significant delay in the appointment despite the fact that it has already been approved. I have some questions for the Minister. Has the appointment been advertised?When will the consultant be appointed? What is the timeline in that regard?

This is a serious and urgent issue for post-transplant CF sufferers. Having a transplant is not the end of it. CF does not suddenly go away. All the other issues still go on in the person's life. If the person then experiences deteriorating lung capacity, he or she is back to the same full-blown CF he or she experienced prior to the lung transplant. Cystic Fibrosis Ireland has been campaigning on this issue for more than three years but we still do not have anyone who will prescribe Kaftrio to CF sufferers. I am seeking an update in that regard.

Kieran O'Donnell (Limerick City, Fine Gael)
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I thank the Senator for raising this issue. I will speak on CF overall and go into the details. Is the patient to whom she referred a woman?

Mary Seery Kearney (Fine Gael)
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Yes.

Kieran O'Donnell (Limerick City, Fine Gael)
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If we can do anything for that lady, I ask the Senator to provide me the details and I will follow up on it. I know many people who have CF. They are a group I admire. Many of them are highly successful. A member of my extended family who has CF is a credit to her parents and leading a very full life. I fully support the provision of any supports that are required in the context of CF.

I thank the Senator for raising this issue and giving me the opportunity to speak on it in the Seanad on behalf of my colleague,the Minister for Health, Deputy Donnelly. The Government is committed to increasing organ donation and transplantation rates in Ireland and making organ donation the norm in situations where the opportunity arises. Organ donation is among the most selfless acts people can bestow on each other. The improvement in the quality of life for organ recipients and their families cannot be overstated. We have a duty to do everything we can to ensure that as many people as possible benefit from organ donation.

The Government has taken a number of measures in recent years to improve organ donation and transplantation services in Ireland. Since 2020, an additional €2.25 million in funding has been allocated to support the ongoing development of transplant services. This funding has enabled the HSE to: develop the staffing and infrastructure of the organ donation and transplant system; prepare the online opt-out register for the upcoming system of opt-out consent to be implemented with the Human Tissue (Transplantation, Post-Mortem, Anatomical Examination and Public Display) Bill 2022; undertake a pilot potential donor audit through the National Office of Clinical Audit to better understand and improve donation rates; and enhance our ability to assess organ donors from abroad.

In addition to funding, the Government has introduced the human tissue Bill to provide a national legislative framework for operating donation and transplant services in Ireland. This Bill, which is currently progressing through the Oireachtas, will support organ donation and transplantation through the introduction of a soft opt-out organ donation system. Under this system, when a person dies consent to donation will be deemed unless the person has registered his or her wish not to become an organ donor after death. Family members will continue to be consulted prior to removing any organ. If the next-of-kin objects to the organ donation, the donation will not proceed. The Bill further legislates for living organ donation and will provide pathways for non-directed altruistic donation. The introduction of this system, together with an extensive communication and education programme, will help raise awareness of organ donation and ultimately encourage more people to donate.

I will deal specifically with the issue of the consultant physician post. This is the kernel of the matter raised by the Senator. We have been informed by the HSE that engagement is ongoing between organ donation and transplant Ireland, ODTI, and the cystic fibrosis national clinical programme regarding the structuring of this post. It is expected the post will be approved shortly and recruited, subject to suitable candidates applying, in 2023. I will follow up with the Department and get precise dates for when it will be advertised, when the recruitment will take place and when it is expected to have a consultant in place. I undertake to go back to the Minister to obtain those details for the Senator. This appointment will ensure the effective management of the transplant waiting list and minimise the requirement for post-transplant care through the provision of medical support tailored to the needs of this complex patient group of CF sufferers.

Mary Seery Kearney (Fine Gael)
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As a party colleague and since he took up his post as Minister of State, Deputy O'Donnell does nothing but work diligently, and he is very good at following up with his colleagues. However, the speech he has been given is three minutes of absolute piffle that has nothing to do with the question that was asked. It is an obscenity that someone in the Department of Health thought it fit to provide a Minister with a speech that goes on with a load of stuff that has nothing to do with the question I asked.

Paul Gavan (Sinn Fein)
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Well said.

Mary Seery Kearney (Fine Gael)
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There is small group of people whose lives and quality of life depend on action being taken. The advocacy group Cystic Fibrosis Ireland has spent more than three years asking for a consultant who will prescribe kaftrio for post-transplant CF sufferers but what I have got back are vague phrases like "being approved shortly" and "will be recruited". There is no urgency shown towards the people of the Republic the Department of Health is there to serve. That is its job. It is obscene that the Department is not serving the people and thinks the reply it has provided to a Member of the Oireachtas is appropriate. It is an absolute disgrace of an answer.

Kieran O'Donnell (Limerick City, Fine Gael)
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I make the point to Senator Seery Kearney, soon to be Deputy Seery Kearney, that although it is regrettable that recruitment for a consultant respiratory and lung transplantation physician in the Mater hospital has been delayed, the HSE ODTI is working to recruit to the position as soon as possible. Once in place, this consultant physician will provide greater support to lung transplant recipients, including those with CF. I have undertaken to go to the Minister, Deputy Donnelly, and the Department to get the information the Senator is seeking, that is, ultimately, when that consultant physician will be in place in the Mater hospital and, working way back from that, when the post will be advertised, what will be the interview process and when a candidate will be recruited. I have undertaken to follow up in that regard. It is a straightforward request from the Senator and, in the circumstances, I do not intend to cover anything else. That is the heart of her question. I undertake to follow up on that and I will get the Minister to issue a direct response to her.

Mary Seery Kearney (Fine Gael)
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I thank the Minister of State. I do not doubt his sincerity but I doubt that of the Department.