Mary Seery Kearney (Fine Gael) | Oireachtas source

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.