Frank Feighan (Sligo-Leitrim, Fine Gael) | Oireachtas source

I thank Senator McGreehan for raising this issue and providing me with this opportunity to discuss developments in the area. The Minister for Health and I fully appreciate that sickle cell disease can place a substantial medical, social and financial burden on patients, their families and their carers. The Senator outlined exactly what Ms Esther Onolememen and her children had to go through regarding the lack of screening. It is a lifelong, inherited condition that affects both children and adults. At present, we have a two-centre approach to treating patients. Children can access services provided by Children's Health Ireland, CHI, at Crumlin hospital, supported by a multidisciplinary team. Adults can access the services of the haemoglobinopathy service at St. James's Hospital. In support of these services, the HSE currently reimburses a number of medicines under the community drugs scheme for the treatment of both adults and children.

I am advised a number of new therapies are in development for sickle cell disease. The Minister hopes to see those coming on stream as soon as possible, if they are proven to be clinically effective, in line with the Health (Pricing and Supply of Medical Goods) Act 2013. The Senator will be aware the 2013 Act gives full statutory powers to the HSE to make decisions on reimbursement of medicines. In doing so, the HSE takes account of a range of objective factors and expert opinion, as appropriate.

The service at Children's Health Ireland has expanded rapidly since 2000 to cater for the increased prevalence of the disease. In 2000, 20 children were undergoing treatment for sickle cell disease. Last year, 385 children were attending the service, as well as 18 with the related condition of thalassemia. I am pleased to advise there have been other positive developments in terms of services for children. The centre at Crumlin is now designated by the HSE as an expert centre for haemoglobin and red cell disorders. A priority for the HSE in 2022 is to further advance the non-malignant haematology service at CHI Crumlin.

As regards adult services, St. James's Hospital has provided these services since 2014. The scale of activity has also grown from 32 patients in 2014 to more than 220 patients attending the service in 2021. Since the service was set up in 2014, service growth and development has been ongoing, including the following: the establishment of multidisciplinary outpatient clinics; the development of transition clinics involving regular collaboration and communication with CHI Crumlin; and the development of a maternity service in conjunction with the Coombe hospital.

However, due to the increased demand, I am advised by the HSE the transition of patients over the age of 16 years to adult services is currently a challenge due to capacity constraints at St. James's. In order 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 for these services. The Minister hopes this business case can be considered by the HSE in as timely a manner as possible in order that we can begin to see improvements in access to services for adult patients at St. James's as soon as possible.

I again thank the Senator for raising this issue. I do not think many people are aware of it. The number attending adult services has increased from 32 patients in 2014 to 220 patients in 2021. Some 385 children attended the service last year, which was a major increase from 20 in 2000. This is an emerging and very serous issue.