Duncan Smith
Question:12. Deputy Duncan Smith asked the Minister for Health the plans he has to improve treatment for sickle cell and thalassaemia in Ireland; and if he will make a statement on the matter. [16982/22]
View answerThursday, 31 March 2022
Questions (12)
Oral answers (6 contributions)
I would like to ask the Minister what plans he has to improve the treatment and resources for sickle cell and thalassaemia in Ireland.
I thank the Deputy for raising this very important issue. I fully appreciate how sickle cell disease and thalassaemia can place a substantial medical, social and financial burden on patients and their carers.
There are some positive developments in terms of services for children but more needs to be done in the transition for adults. Children can access services provided by Children’s Health Ireland at Crumlin Hospital which, I know, the Deputy will be familiar with. The centre at Crumlin is supported by a multidisciplinary team and it is now designated as an expert centre for haemoglobin and red cell disorders. A priority for the HSE this year is to further advance the non-malignant haematology service at CHI Crumlin. That is very welcome. In support of these services, the HSE currently reimburses a number of medicines under the community drugs schemes. I am further advised that a number of new therapies are in development for the diseases. I would very much like to see those coming on stream as soon as possible, if they are proven to be clinically effective.
All of that is good news. However, more work needs to be done. I am advised by the HSE that the transition of patients over the age of 16 to adult services is a challenge due to capacity at St. James’s Hospital. There are some real challenges there. To address this issue, a business case is under consideration with HSE leadership to further increase capacity at St. James's to meet the growing demand. I will ask the HSE for a speedy consideration of that business case so that we can begin to see improvements in access to services not just for children but for adult patients as they transition to St. James's Hospital.
I thank the Minister. I am very encouraged by the final part of his response. I met with Ms Lora Ruth Wogu, the CEO of Sickle Cell and Thalassaemia Ireland, and Ms Ijeoma Nwabuezi, who is on its board. One of their key concerns is how under pressure the St. James's service is. The service at St. James's Hospital, and the clinicians, are fantastic but they are under pressure. The Minister has acknowledged that. We need to improve resources there.
One of the things I have learned about sickle cell disease is that we need early diagnosis. We may need improved training for our front-line health professionals, GPs and nurses, to help them identify it earlier. It is a rare condition. We also need to consider a universal newborn screening campaign that can be done with the heel prick test. This is a condition that mainly impacts people of African heritage and some people from the Middle East. There are ways in which this could be done efficiently and in a targeted fashion to help follow-on services and the provision of new therapies.
I thank the Deputy for his ongoing advocacy in this area. These are red blood cell disorders that can affect adults and children. The children can access the services of the paediatric haemoglobin and red cell disorder programme in Children's Health Ireland. In 2000, a maximum of 20 patients with such a disorder had been identified. Today, nearly 400 patients have been identified. That is a considerable increase. As the Deputy said, adults can access services in St. James's Hospital and have been able to do so since 2014. There was a very low base of patients who needed services.
There are currently 34 patients with sickle cell disease and thalassaemia in St. James's Hospital. They are on a chronic transfusion programme. In my final response, I will give the Deputy the rest of the information.
This condition is incredibly painful. When it flares up and is in crisis, the pain throughout the body is indescribable. It is a serious, painful and debilitating condition.
We need to consider an improved blood donation campaign. I know that is true across the entire county for a range of conditions, but there are a number of rare subtypes of blood that we need greater supplies of. We need specific campaigns to try to get members of the African community to donate blood, particularly rare subtypes such as Ro, to have sufficient supplies as part of a multifaceted response to treat this condition.
I commend the work of Sickle Cell and Thalassaemia Ireland. Their campaign is ten years old this year, so if we could see some progress in the next few months, that would be great.
I thank the Deputy for his suggestions. I will refer his suggestion on the heel prick test. We have a group examining these issues. One of the things we want to do is to expand the number of conditions that are tested for. That is, in part, a result of the phenomenal advocacy work of Mr. Les Martin in terms of newborn screening. I will also refer the Deputy's suggestion around blood donation.
While the business case to expand access is being looked at in St. James's, there are no issues at the moment around the availability of the medicines, which is welcome. The medicines to treat the complications are available for reimbursement. We have approximately 41 patients who are awaiting transfer to CHI at the moment, and for all the reasons the Deputy has laid out, we need to make sure that can happen for those people as quickly as possible.
Question No. 13 replied to with Written Answers.