Gerald Nash (Louth, Labour)
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I thank the Minister of State for being in the Chamber to respond to this issue.

Alice Turner, Drogheda; Clodagh Daly, County Laois; Robin Smith, Dublin; Merryn Lacy, Bray; and Donal Parsons, Sligo, are infants affected by neuroblastoma. The first time most Irish people heard about this dreadful illness was when Lily-Mae Morrison, the "tiny dancer" from Galway, and her family captured their hearts last year and the year before when raising awareness of the condition and funds for her treatment in the USA. She is doing well. Thanks to the tenacity and determination of her family, friends and supporters across the country, she received the kind of treatment that at least six but possibly ten or 11 Irish children with the same condition need. The families affected by this often extremely aggressive childhood cancer are very grateful for the expert care they have received from, and the commitment shown by, medical staff here. The treatment and support provided are excellent.

A seriously sick child is every family's worst nightmare. Our hearts sink when we hear about a child diagnosed with any life-threatening condition. A diagnosis of neuroblastoma presents a whole new set of challenges for the family affected. It is the natural order for parents to do anything in their power to give their children a shot at life. In the case of neuroblastoma, this can mean having to raise up to $200,000 to meet the cost of getting onto a treatment programme in the United States that has a proven success rate and minimises the often catastrophic risk of relapse. Relapse rates are extremely high; they can be 70% to 80% in cases where the aggressive form of the condition is present. There are strong reports from the United States on the efficacy of this programme and treatment.

I do not have the answers to all of these challenges for families living with this waking nightmare. I do not expect the Minister of State to have the answers, but I appeal to him to find a better, more humane and supportive way for the State to assist these families in spending as much of the precious time they have available with their families, not going from cake sale to coffee morning, from fund-raising gig to table quiz, to ensure their children get the chance every child deserves.

Alex White (Dublin South, Labour)
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I welcome the opportunity to speak about the condition of neuroblastoma.

Neuroblastoma is a disease in which malignant cancer cells form in nerve tissue such as adrenal gland, the neck, chest or spinal cord. It most often begins during early childhood, usually in children younger than five years of age. Proven treatment regimens for children with neuroblastoma are provided at Our Lady's Hospital for Sick Children in Crumlin, the centre for paediatric oncology services. Treatment for neuroblastoma involves a number of diagnostic and treatment approaches which include surgery, chemotherapy and radiotherapy.

Under the treatment abroad scheme, the Health Service Executive, HSE, provides the cost of approved treatments in another EU or EEA member state or Switzerland. The application to refer a patient abroad must have been assessed and a determination given before the patient travels abroad. To qualify for the treatment abroad scheme, the treatment must be medically necessary and meet the patient's needs. In addition, it must be a proven form of medical treatment that is not experimental.

Ireland has focused on improving the quality of cancer services through reorganisation and expansion. The overall approach is set out in the strategy for cancer control. Great improvements have been made in cancer diagnosis and treatment. We have moved from a fragmented system of care to one that consolidates cancer treatment, with multidisciplinary care and decision-making. Survival rates for all cancers are rising. The five year survival rate has increased to 56.4% for people diagnosed between 2003 and 2007. It was 49.6% for those diagnosed between 1998 and 2002. The full impact of the reforms in cancer care should, in time, further improve survival rates.

I acknowledge that parents of children who have been diagnosed with neuroblastoma, or any other serious illness, will be concerned that their children receive the best care and treatment. I am informed by the HSE that Our Lady's Hospital for Sick Children in Crumlin provides proven treatment regimens for children with neuroblastoma which are of a world class standard.

Children are treated there according to the European neuroblastoma protocol, which incorporates all available therapies. There is no other recognised proven treatment anywhere in the world. In the last year, a new phase two trial has been opened in Our Lady's hospital and staff and experts operate proactively in this field in a structured and ethical way. The ongoing developments in this field are clearly welcome and we will do all we can to support the parents and families of young children with neuroblastoma.

Gerald Nash (Louth, Labour)
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The reason I raised this issue is because I have seen the direct impact on two families in Drogheda and Galway whom I know very well. The way in which the community in Drogheda has responded has, like other communities across the country, been phenomenal in terms of fund raising and the staff who provide the treatment regimen in Crumlin are a credit to the health service.

However, I raise the issue because I get the sense that diagnoses of this condition are on the rise. It is legitimate to inquire into how the State intends to manage neuroblastoma if it is becoming more prevalent. Funding will be particularly challenging in the absence of a comprehensive strategy on the part of the HSE to provide new or evolving treatments. The Minister of State will be aware of the types of treatment currently available in the United States. Many of these treatments are still under trial but their efficacy has been well proven. It has been drawn to my attention that a number of treatments have success rates of 100% in dealing with recurrence or relapse. It is imperative that the Department of Health and the HSE develop strategies and support mechanisms for families who are currently compelled to raise significant funds to give their children the best chance at life.

Alex White (Dublin South, Labour)
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Deputy Nash is correct in regard to the improvements that have been made in diagnosis and survival rates. We are focusing on improving the quality of cancer services through reorganisation and expansion. Previously we had a fragmented system but we have consolidated cancer treatment in eight designated cancer centres, not including Crumlin, with multidisciplinary care and decision making. Given the time required to achieve full national roll out and rapid access clinics in designated centres, the full impact of the establishment of the national cancer control programme and the introduction of cancer screening programmes will not be realised until we evaluate five year mortality rates for patients diagnosed from 2012 onwards. There are enormous opportunities in this area but they bring with them the kinds of challenges that Deputy Nash outlined. We will do all we can to assist families and provide cancer diagnosis and treatment at the highest international standards.