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TEENAGERS AND YOUNG adults in Ireland are to get greater access to clinical cancer trials under a new HSE framework for patients aged 16-25.
Cancer is the leading cause of natural death in this population, with approximately 30% due to haematological malignancies such as leukaemia.
The incidence rate of some cancers such as germ cell tumours, sarcomas, Hodgkin’s lymphoma is higher in this age group than in both adults and children and the incidence rate of cancer overall is rising.
Today the HSE has launched a new framework for the care and support of adolescents and young adults with cancer in Ireland. Around 200 children are diagnosed every year with cancer up to the age of 16, with 180-190 people between 16 and 25 years diagnosed every year.
The HSE said studies over the past three decades have shown that while paediatric and older adult cancers have seen a large increase in survival rates, the same cannot be said for some specific adolescent and young adult cancers. This has become an increased area of focus in the oncology community in the recent past.
As part of the new framework targeted at adolescents and young adults, increasing access to clinical trials will be a key focus.
Speaking to The Journal, Professor Owen Smith, HSE National Clinical Lead NCCP Child, Adolescent and Young Adult Cancer said patients who participate in clinical trials do better but many trials have excluded this cohort.
“If we look at clinical trials for children, 65% of children in CHI Crumlin are entered into a trial. Across all eight cancer centres less than 5% of this age group of 16 to 25s are entered into a clinical trial. That’s a huge difference.
“Some trials up until now have excluded them, many would only allow participants up to the age of 18 while others start at 25, so we need to start designing trials around age and not the pharmaceutical industry.”
He said Children’s Hospital Ireland has entered a relationship with the Health Research Board and secured funding to recruit participants up to the age of 25. A new clinical trial will open later this summer which will include patients in Ireland aged 1-45 years who have acute lymphoblastic leukaemia.
Professor Smith said under the new framework, four centres – at CHI, St James’ Hospital, Cork University Hospital and University Hospital Galway – will ensure greater discussion on the inclusion of patients aged 16-25 takes place during the development of clinical trials.
“This group is developing unique types of tumours and the incidence of these is increasing all the time so we need to address that,” he said.
Patients live longer on clinical trials, they also get specimens taken like biopsies and they go to research, genomics, genetics. We want to know what the drivers are for the kinds of cancers seen in this age group and also what drives toxicity in some patients [due to treatments] as not all get toxicities. We believe we’ll be able to pull them out -the bad actors – and adjust the dosage or modify treatments so we can reduce toxicities.
Professor Smith said the needs of this cohort of young people is “completely different” to adults and younger children when it comes to treatment.
“They have unique needs like fertility preservation and survivorship transition from adolescents into adults as well as their psycho-social care,” he said.
“The way we treat them is totally inappropriate, up until now a 16 or 17-year-old has been treated in an adult section sitting beside 60 to 70-year-olds and a 14 or 15-year-old is treated beside two or three-year-olds.”
He said it is important for this age cohort to have contact with their peers.
The HSE has said the new framework will see care delivered locally where possible but centralised when necessary by providing separate facilities and specialist care teams in the new Children’s Hospital and three of the eight adult designated cancer centres around the country.
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Let’s not forget the back round these children come from. Abuse, alcoholic patents drug abuse and in some cases child abuse. There not all lucky enough to have well to do parents who themselves have been educated well enough to know how to provide a stable home for there children and by well educated I don’t mean schooling. Right from wrong comes from level headed parenting. A frankly stupid comment pat
The terrible thing about this is that no one reading it is surprised. We all know st pats has been a condemned, inadequate and an unfunny joke for years now.
Disgraceful.
Apparently only half of the criminals have access to a playstation. Lets not forget that in order to get into Pats a youth had to have used up all his many chances with the juvenile diversion program as well as appear in court on enough charges to bypass fines, probation and suspended sentences.
Sean, my point is not on their level of degeneracy but that adequate services should be provided for them. Doesn’t matter what they’ve done, they need to be treated humanely in a decent environment.
Treat them like crap and guess how they’ll turn out.
My point Ferg is that people who have gone to Pats have already had massive amounts of money sunk into them. Even if you ignore the cost of their crimes, both financially and mentally, they have still had lots of money invested in them via the juvenile diversion program and probation services. If they still want to keep making people lives a misery then they pretty much deserve what they get.
Think of all the ‘disturbing issues’ the delinquent inmates left their victims with.
Prison is not a holiday camp. It is a punishment and should be a deterrent. St. Pats inmates do not get sent there for 1st, 2nd or 3rd offences. They’re there because they have committed endless offences and as usual the bleeding hearts pity them because of their up bringing. They are old enough to know right from wrong and are of an age of criminal responsibility. If they do wrong, they should be punished to teach the little swines some respect. Not much point in having them out roaming estates terrorising decent folk.
I notice they found the worse possible photo of pats they could with the hut in it. Prisoners have it handy enough and only 1 landing has play stations the drug free one no one else has them
It is funny how judge Riley is now inspector for prisons and he had no problem sending 16 year olds to St. Patrick’s plus people to limerick. From my experience of him he sent people with drug problems to jail and drug dealers where left off. Rant over:) prison doesn’t work for kids nor adults it actually makes 90% of prisoners worse! This country needs fresh ideas
I WOULD SAY IT’S PAR FOR THE COURSE.
ALL PRISONS ARE FAIRLY SIMILAR. BRUTALISING PLACES, RUN BY BRUTES.
NOT TO MENTION GARDA STATION “CUSTODY SUITES”
AS THE OLD ADAGE GOES. “POWER REDUCES EMPATHY”
have your say