Mark Daly (Fianna Fail)
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I welcome the Minister of State at the Department of Health, Deputy Feighan, to the House.

Erin McGreehan (Fianna Fail)
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The Minister of State is very welcome. I wish to raise the issue of sickle cell disease and patients with the disease. Last weekend, I attended a fantastic celebration in Malahide to raise awareness of sickle cell disease. I have been to several awareness days in recent years. The organisation in question is an incredibly positive one, even when it comes to dealing with such a serious condition.

There are more than 600 people in Ireland with sickle cell disease. More than two thirds of those with the disease are under 18 years of age. The majority of those with sickle cell disease are treated at two centres of expertise, namely, Our Lady's Children's Hospital, Crumlin, and St. James's Hospital. It is really important to get early diagnosis in order to prevent early deaths. The team at Crumlin hospital have done incredible work over many years and have organised neonatal screening that is now carried out at the majority of maternity hospitals.

The Minister of State is aware that the migrant population in Ireland has increased in recent years. Many of those among the migrant population are genetically predisposed to sickle cell disease. It is one of two major genetic blood disorders that affect red blood cells. Those living with sickle cell disease experience many significant difficulties. My priority in tabling this Commencement matter is to raise awareness of sickle cell disease within the migrant community and for migrants to be empowered to undergo genetic testing. I very much welcome the fact that the national screening advisory committee has added sickle cell disease as one of its priorities this year.

I know the Minister of State will have a comprehensive answer for me, so, rather than asking questions, I wish to highlight a particular family. Esther Onolememen is the founder and CEO of Sickle Cell Society Ireland. She is the mother of two children with sickle cell disease. She has identified to me the importance of a registry of children at risk of this life-threatening genetic condition. As a result of the lack of screening, there was a delay in finding out that her children have sickle cell disease. One of her children suffered a stroke at eight months, prior to accessing adequate care in Ireland. Her daughter suffered life-threatening multiple organ failures while accessing care and spent approximately nine months in hospital, with three ICU admissions. She completed her junior certificate from a hospital bed in Crumlin. Thankfully, due to the support of international experts and improved medical care within Ireland, she has recovered. She is still accessing care in hospital, but more regularly than other cohorts. Not all of the children with sickle cell disease are lucky enough to survive. There was a terrible incident in 2019 when a young boy with severe sickle cell disease who fought a deportation order died from complications resulting from his ill health.

I have a few asks of the Minister of State. There is a need to work on awareness and a national screening database. There is a need for awareness in direct provision centres because many people who come here are carriers of the disease but are unaware of that fact.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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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.

Erin McGreehan (Fianna Fail)
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This is a growing medical issue for Irish citizens across this island. We must grow our medical intelligence to assist doctors to get the best research and care to be passed on to these patients.

I reiterate the few proposals I would like the Minister of State to bring back to the Department. I would like it to focus on the cohort of people who are genetically predisposed to this disease, particularly in direct provision centres, to make sure they have screening for sickle cell disease. Like cystic fibrosis, it takes two carriers to have a child with sickle cell disease. Children are been born in Ireland and their parents do not know that they have sickle cell disease. I called for the setting up of a database and registry to examine the geographic spread and to consider the possibility of having satellite care clinics. If one is based in Galway or Cork, travelling to St. James’s Hospital or CHI Crumlin would involve a major financial cost and often those people do not have those financial resources. Research in the area and an awareness campaign are needed, particularly for people who are genetically predisposed to the condition.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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I have listened to the Senator and can assure her the Minister appreciates the difficulty faced by people suffering from this awful condition. She spoke about those who are genetically predisposed to this disease living in direct provision centres and requested a database be set up and satellite care centres be provided. That is a very worthy solution to a very difficult issue.

There is no doubt with the growing prevalence of the disease, services for adults are stretched. The services available for those with sickle cell disease faced capacity challenges in recent years as the demand for both paediatric and adult services have increased. I am pleased to inform the Senator the HSE continues to enhance and develop these services in order to provide the necessary level of care to those suffering from this condition.

It is encouraging that the centre at CHI Crumlin has been designated as an expert centre for haemoglobin and red cell disorders. The good work of the HSE at the expert centre in Crumlin was reflected in the approval in 2017 by the European Commission for the inclusion of CHI in the European reference network, EuroBloodNet, and further developments at the centre have been prioritised by the HSE in 2022. I again thank the Senator for raising this issue.

Erin McGreehan (Fianna Fail)
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Go raibh maith agat.