Hopes for sick children who go abroad may be ‘unrealistic’

Specialists say Ireland is at the forefront of medical developments and the HSE never refuses seriously ill children the best treatment

Prof Owen Smith, haematologist, and Dr Michael Capra, oncologist, at Our Lady’s Children’s Hospital, Crumlin: certain treatments abroad are “giving hope we believe is unrealistic. In some cases I have said, what you are doing will harm your child”. Photograph: Cyril Byrne

Prof Owen Smith, haematologist, and Dr Michael Capra, oncologist, at Our Lady’s Children’s Hospital, Crumlin: certain treatments abroad are “giving hope we believe is unrealistic. In some cases I have said, what you are doing will harm your child”. Photograph: Cyril Byrne

Wed, Aug 20, 2014, 14:07

Some treatments offered abroad “give hope which we believe is unrealistic and without foundation”, say two of Ireland’s leading children’s doctors.

In a frank interview with The Irish Times, consultant paediatric haematologist Prof Owen Smith and consultant paediatric oncologist Dr Michael Capra, both of Our Lady’s Children’s Hospital, Crumlin, say they fear there can be “an exploitation of hope,” involving seriously sick children.

They are worried that parents could, as a result, feel “children in Ireland were being underchanged” by the health service.

The perception that treatments abroad can offer hope to very sick children “is not unique to Ireland. It is an international problem and it has got worse in the past five years because social media is [now] involved,” says Dr Capra.

The doctors say children in Ireland are taking part in a number of international trials and that Ireland is at the forefront of developments in cancer treatment.They also say the HSE has “never” refused them funding for any treatments or drugs that have been shown to increase survival rates.

“We have the same trial portfolio as Great Ormond Street Hospital in London, which is the leading paediatric cancer unit in the UK,” he said.

Dr Capra and Prof Smith are in a team of five consultants at Crumlin hospital, which is the childhood cancer centre for under-16s in the country.

Each year some 170 children are diagnosed and, while some cancer care can be given at home, “the lion’s share of treatment is delivered here”, said Dr Capra.

The overall survival rate for paediatric cancer is between 75 per cent and 80 per cent and the doctors attribute this improvement to “international collaboration in the form of clinical trials, where internationally we all work together rather than as single units”.

“Participation in randomised, peer-reviewed, clinical trials has really stepped up the cure rates by 30 per cent in the past 30 years,” says Prof Smith.

The number of patients needed for the trials mean that Ireland must work with other countries. This allows access to trials in other countries in Europe and in the US.

“We couldn’t do those [trials] on our own; we have to get into bed with other international collaborators. So if a child is diagnosed here with a cancer and there is a clinical trial open or available, that child will be entered into that clinical trial,” he says. They say every parent and patient is spoken to about the trials. “Most of them incorporate chemotherapy that is well known, tried and tested, but [the trial relates to] the way in which it is given, the dose, the sequencing and minor variations in the types of these chemotherapies,” says Dr Capra.

“Some trials include new or novel drugs that have gone through a whole maturation process of trials. A maturation of a trial would be a laboratory where no patients are tested – so just on cells; they then transfer that into an animal-type model, then into the human model, and to different phases of trials,” he says.

Prof Smith and Dr Capra prefer to use the word protocol instead of trial, which is an emotive word.

“Some of our parents say, ‘What are you trialling here? Why are you putting my child on a trial?’

“If we have a result from a protocol that has, for example, an 85 per cent cure rate, the next protocol will ask another two, maybe three questions and it is highly unlikely that the cure rate will fall below the previous trial. If you look at our outcomes, they go up and rarely, if ever, go down,” says Prof Smith.

Trials

Our Lady’s Children’s Hospital is involved in a number of trials in collaboration with other international groups including the predominantly UK-based Children’s Cancer Leukaemia group, the pan-European International Society of Paediatric Oncology (SIOP) and the North America collaborative organisation the Children’s Oncology Group, and it has recently joined with the Innovative Therapies for Children with Cancer consortium, which is European based and uses new agents (see panel).

The latter, by definition, “looks at new or experimental treatment and how to bring it into the clinical arena. “If there is something new, it will predominantly come from that group and the other international groups will follow that with protocols across the world,” says Dr Capra.

This collaboration by Crumlin hospital means Ireland is as much at the forefront of treatment as any other country in Europe.

According to Prof Smith, a benefit of Crumlin’s participation in the large international trials is, “in a big trial these novel agents come free”.

The most common childhood cancers are leukaemia, brain tumours and neuroblastoma. Leukaemia has a survival rate of more than 90 per cent but not every prognosis is that good.

Dr Capra says that if a case of neuroblastoma is diagnosed as “high risk”, the survival rate is between 30 and 50 per cent.

“There is approximately a 60 per cent chance that patients, once cured, will relapse and relapse is invariably fatal.”

“Figures [for survival after relapse] are in the region of 4 per cent, possibly 8 per cent, but that is optimistic and there lies the emotion. If you are dealing with a patient who has a high chance of relapse we know is invariably fatal, patients and families will try to move heaven and earth: understandably.”