Erin McGreehan (Fianna Fail) | Oireachtas source

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.