Parents 'exploited' by overseas youth cancer treatments

Hope offered by experimental cancer treatments abroad is “unrealistic” and, in some cases, may harm children, two leading childhood cancer specialists have warned.

Consultant Prof Owen Smith and oncologist Dr Michael Capra of Our Lady's Hospital for Sick Children in Crumlin, Dublin, said they fear parents of seriously sick children are being "exploited".

The perception that treatments abroad can offer hope to very sick children is not unique to Ireland, Dr Capra said.

“It is an international problem and it has got worse in the last five years because social media is [now] involved,” he said.

Our Lady’s is the childhood cancer centre for under 16s in Ireland and each year treats most of the 170 children newly diagnosed. The overall survival rate for paediatric cancer is between 75 and 80 per cent. The most common childhood cancers are leukaemia, brain tumours and neuroblastoma. Leukaemia has a survival rate of over 90 per cent.

Dr Capra and Prof Smith work as part of a team of five consultants at the hospital and attribute the improvement in survival rates “to international collaboration in the form of clinical trials where internationally we all work together rather than as single units”.

International trials

Children in Ireland take part in international trials and Ireland is at the forefront in cancer treatment, Dr Capra and Prof Smith said. Our Lady’s has the same trial portfolio as Great Ormond Street Hospital in London, the leading paediatric cancer unit in the UK.

They also said the Health Service Executive has "never" refused them funding for any drug shown to add to survival. And, if appropriate treatment is only available overseas, they "will fight tooth and nail" to get the Government to fund it.

Dr Capra said if a condition is diagnosed as “high-risk”, with survival after relapse in the region of 4-8 per cent, patients and families will understandably “try and move heaven and earth”.

In North America, an individual hospital may open its own novel trial, Prof Smith said. The market there is competitive and therefore “the more patients they treat, the more money they earn”. Dr Capra said the treatments are giving hope they believe is unrealistic. “I say to the parents it is your decision to go, it is not my recommendation. . . In some cases I have said what you are doing will harm your child.”