Fidelma Healy Eames (Fine Gael) | Oireachtas source

The Minister, Deputy Hogan, is very welcome. My request to him is to ask the Minister for Health to outline the criteria used to determine the eligibility of children with rare life-threatening cancers and other illnesses for financial support from the Health Service Executive in order that they may be included in clinical trials in foreign jurisdictions. Moreover, if this is not possible, the Minister for Health should outline the reason. It is with some regret that I note the Minister for Children and Youth Affairs, Deputy Fitzgerald, has left the Chamber given this issue also would fall within her remit.

Considering the recent passing of the children's referendum and its purpose to put children first, it is important to explore every opportunity for life, for saving lives and for the health care of our children in foreign jurisdictions, particularly children with neuroblastoma. The Minister may have heard of a little girl called Lily Mae Morrison, who is four years of age, is from Claregalway, County Galway, and who suffers from stage 4 neuroblastoma. Her parents are Judith Sibley and Leighton Morrison, both of whom are self-employed professional ballet dancers. Neuroblastoma is a rare childhood cancer of the nervous system affecting one in 100,000 children, primarily under the age of five. Between six and eight cases per year are reported in Ireland and while the prognosis for survival at stage 4 is poor, a number of treatments are available in Ireland through the HSE that improve the survival rates of sufferers. The treatment takes two years and involves chemotherapy, radiotherapy, surgery, stem cell harvesting and rebuild and it involves many inpatient and outpatient visits. At the end of the treatment, there still is a 70% chance of relapse and the treatment options in Ireland after relapse are limited, the most common option being palliative chemotherapy. A number of clinical trials for treatments for relapsed neuroblastoma are under way, one in the United States and another in Germany. These trials indicate an improved survival rate of more than 50% for those children availing of the trials.

The cost of the trials are between ¤500,000 and ¤750,000. There are anecdotal accounts of adult cancer sufferers, in particular those suffering from brain tumours, being facilitated by the HSE with financial assistance to go on clinical trials in foreign jurisdictions for cancer treatment. Could the Minister confirm if that is the case and if so, why they would be extended to adults and not children? Is it not the case that all cancer treatments are trials by their very nature, whether or not approved by the HSE for treatment. What trials are going on in this country that could help and what partnerships exist, if any, between Irish hospitals and other EU jurisdictions that could assist children with neuroblastoma?

In the United States in 2009, a total of $5.6 billion in funding was spent on cancer research. The sum of $3 million went towards research on neuroblastoma. The average life person years lost due to neuroblastoma is 67 years. The average loss for breast cancer is 16 years, which illustrates that neuroblastoma is a particularly aggressive form of cancer.

Lily Mae has become a national treasure. The Minister may know of her. She has been on every media outlet and her story has been covered extensively by the Irish media on television, radio and in print, including ?Nationwide?, ?The Late Late Show?, the ?Craig Doyle Show?, ?Ireland AM?, "Midday", ?The Afternoon Show?, and by theIrish Independent and the tabloid press. The campaign behind her has recorded the song "Tiny Dancer" ? she is a tiny little girl ? the song by Elton John and Bernie Taupin, who both endorsed her campaign. That is an indication of the extent of people she has reached. She has a weekly following of more than 450,000 people. On average, more than 45,000 people engage with her story on a daily basis either liking, sharing or commenting on a story on her page. It has been shown that 52% of fans are aged between 24 and 44 and two thirds of them are female. She is building up a considerable following. This is now a national story.

To date, the campaign supporting her treatment is somewhere in the region of ¤50,000 but it is not just about the amount of money raised, which is significant; it is about the value of the media coverage the charity single has garnered for neuroblastoma and the increased awareness of the disease it has created in this country and internationally. The beneficiaries of the project are the Sunni Mae Trust, established to help with the care and future medical needs of Lily Mae and the Neuroblastoma Society, a United Kingdom-based charity established by the parents of children with this disease or those whose children have died of the disease that endows neuroblastoma research with financial support in order to promote the discovery of new treatments and potentially a cure for the disease. I have deliberately put all of that on the record. This is a serious case that touches the lives of many people in Galway and across the country, in particular the four-year old girl. It affects six to eight little children every year in this country. I await the Minister?s response.