Senator seeks clarity on financial support for sick children’s treatment abroad

Galway West senator Fidelma Healy Eames is to seek a meeting with the Minister for Health in the new year to examine what financial support is available for children with rare life-threatening cancers and other illnesses who may require treatment abroad or could benefit from clinical trials.

The senator recently put forward a motion asking for clarity on Government financial support options for children such as four-year-old Lily Mae Morrison from Claregalway, who is suffering from stage four neuroblastoma. Senator Healy Eames told the Advertiser that it is vitally important these children and their families to have access to such funding when looking at treatment or clinical trials aboard.

“The motion made a case for funding for trials in countries such as Germany and the US where there are advances being made on illnesses like neuroblastoma. There is funding available for treatments but not for clinical trials,” said Senator Healy Eames who added that the criteria this type of financial support needs to be clarified and expanded.

In the motion Senator Healy Eames urged the Minister of 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 HSE in order that they may be included in clinical trials in foreign jurisdictions. Moreover, if this is not possible, the Minister of Health should outline the reason”.

“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.

“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 four 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 per cent 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 per cent 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?”

The response to the motion stated that the HSE operates a treatment abroad scheme called TAS which is open to persons entitled for treatment “in EU or EEA member states or Switzerland under EU Regulation 1408/71, as per the procedures set out in EU Regulation 574/72, and in accordance with Department of Health guidelines”. Applications for the scheme are accessed in accordance with legislation and guidelines and on the basis of a review by clinical experts. It was also stated that applications to the scheme are “only accepted where a patient, adult or child, are being referred outside the State for proven treatment that cannot be obtained within the state”.

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