Ms Loru Ruth Wogu:

I thank the committee for having me. The organisation was set up with the parents and carers of patients with sickle cell disease and the adults who have the disease. We are trying to encourage support as well as awareness because we know sickle cell disease is new in Ireland and most of the public is unaware of what it is. We are trying to raise as much awareness as possible and trying to see how we can support each other and the families going through sickle cell anaemia.

Our main campaign concerns genetic screening, whereby we hope we can have a newborn screening programme for all target groups. Dr. McMahon has spoken about that. During our campaign, we found that most people of African and Asian origin do not know about sickle cell disease and have not had the test. They do not know their status so it is important to have the screening programme in maternity hospitals for all newborns. We are also looking at knowing the statistics of adults who have sickle cell in Ireland. Through knowing the statistics, we know about the number of potential cases in the future. As the migration system is growing, there are many Africans and Indians, who are the target groups for sickle cell disease.

Dr. Conneally spoke about medical cards. Many patients find it very hard and will find it very hard in the future to be able to pay for medical services. They need to be considered for discretionary medical cards.

With regard to the training initiative, because we are working mainly on awareness, we hope that the committee can consider linking us to the HSE and the education system on providing more training on sickle cell disease in schools and colleges, especially for the medical students who should come out knowing more about it, how it is to be treated and how to treat a patient suffering from sickle cell anaemia.