Children’s cancer centres funding trebled to fight parents’ agony

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Teiva is left exhausted after her treatment (Image: Supplied)

Funding for Britain’s network of children’s cancer research units will be trebled today – in a huge boost for the battle to end families’ heartache. Scientists at 12 paediatric experimental medicine centres use clinical trials to check drugs’ efficacy and safety.

This means young patients can access promising new therapies close to home if there are no approved treatments available.

The network was funded by Cancer Research UK, the National Institute for Health and Care Research and Scotland’s Chief Scientific Office.

Now they are being joined by the Little Princess Trust and Health and Care Research Wales. And the group will increase the network budget from £2.3million to £6.6million over five years.

It will fund more nurses, staff and storage capacity for patient samples, plus training for researchers specialising in children and young people’s cancers.

Michelle Mitchell, of CRUK, said: “These experimental cancer medicine centres ensure that the best clinical trials take place across the UK.

“Without them, families would have to travel long distances to get desperately needed treatments for their children.”

Phil Brace, chief executive of The Little Princess Trust, said: “Our commitment will help to develop future treatments and we hope the knowledge gained will not only save lives but also lead to kinder, less toxic, medicines.”

Around 4,200 children and young people are diagnosed with cancer each year.

Survival rates have more than doubled since the 1970s thanks to research. Around 80 percent of children now survive for at least 10 years after a diagnosis.

However, treatments are needed for cancers with worse survival rates. And experts are striving to find better therapy with fewer long-term side effects.

Dr Guy Manakin, a consultant paediatric oncologist working in Manchester, said many children are cured with chemotherapy.

He explained: “Most of the drugs we use to treat children with cancer have been around for 40-plus years and we carry on using them because they work. But they produce side effects – short, medium and long-term.

“If you cure someone at the age of five and they are going to live for another 80 years, the long-term effects of that treatment are very important.”

Studies undertaken by the ECMCs could lead to less toxic treatments which can be targeted to each patient and their tumours.

Research into experimental drugs is also important for children whose cancer returns.

Some such as ­neuroblastoma don’t respond to the same treatment a second time. Dr Manakin said: “What the ECMC has done is allowed us to have experimental trial options available more widely. Fifteen years ago you probably had to go to London and we had lots of families going to other countries to access drugs.

“Now, whenever you happen to relapse, there will be an experimental treatment that’s available somewhere reasonably close to you so you won’t have to travel.” Dr Sara Ghorashian, a consultant in paediatric haematology, is one of the network’s immunotherapy leads.

She said years ago drugs were not tested in children and doctors tried to determine care from research in adults. She said: “Then we understood that’s not the way things work. Children metabolise drugs differently to adults.”

Dr Ghorashian added that funding from charities and governments is vital to drive forward research. She said: “Childhood cancers are different to adult cancers and rarer.

“As a commercial venture, there’s very little interest in paediatric cancer because the market is so small.

“Without funding from other sources, we wouldn’t have the ability to investigate childhood cancers in the same way we can investigate adult cancers.”

ECMCs are in Birmingham, Bristol, Cambridge, Glasgow, Liverpool, Cardiff, Leeds, Manchester, Southampton, Newcastle and two in London.

Meanwhile, the Daily Express Back Britain To Beat Childhood Cancer crusade is calling for ministers to fund research into a vaccine that could cut relapse risk. Families are spending hundreds of thousands of pounds to travel to the US to join a study of the jab.

Teiva is struggling every day with chemo after-effects

Teiva is struggling every day with chemo after-effects (Image: Supplied)

”Chemo left my daughter with long-term issues”

Teiva Collins rang the bell on her hospital ward to mark the end of her treatment in December 2021.

But more than a year later the 13-year-old is still suffering side effects of the intense chemotherapy needed to eradicate her cancer.

After Teiva started feeling breathless and lost her appetite, her doctor diagnosed her with acute lymphoblastic leukaemia in May 2019.

Teiva’s mum Dawn, 45, recalled: “That’s when our world turned upside down – and it hasn’t been right since.”

Two years of chemotherapy to kill the problem cells have left Teiva with adrenal gland problems, stomach-related issues and regular headaches.

Dawn, of Four Marks in Hampshire, said: “I don’t feel like our lives have changed from when we were going through the cancer. We’re still hugely affected and in hospital at least twice a month.

“You think that once they ring that bell, everything’s going to return to normal. But Teiva barely manages a full week in school.

“She literally does not have one day where she just feels well.”

Teiva, who is an ambassador for The Little Princess Trust, has shared her journey on social media to raise awareness of children’s cancers.

Dawn said she fully supports research into kinder treatments that would help children survive, without being plagued by side effects, as Teiva has been.

She added: “We welcome anything that might help other families in the future.

“Teiva has always shown incredible courage and bravery, with a smile on her face, and such politeness with all of the doctors and nurses.

“But the ongoing issues are taking their toll. We hope that this funding will help bring about progress.”

Research being carried out by ECMC

StratMedPaediatrics

Analyses tumours in youngsters after they have relapsed to find genetic features that could be targeted by existing treatments. The team has profiled more than 650 tumours since 2017.

ESMART trial

Matches less common cancers to a therapy based on bespoke testing on a tumour.

DETERMINE trial

Aims to find out if existing drugs, including those licensed for more common cancers, could also benefit rare types that the cure is not licensed for.

Pharmacology TDM

Provides chemo dosing guidance for those complicated to treat – premature babies, infants and kidney patients.

ACCELERATE FAIR Trials initiative

Trying to improve access to clinical trials for teens and young adults, who often face barriers. It offers a “stamp” to those offering equal access.

VIVO biobank

Stores a wealth of samples and data from youngsters’ cancers. Resource will support researchers and clinicians.

MiNivAN

Looks at combining three drugs to treat neuroblastoma that grows during treatment or comes back after treatment.

BEACON Neuroblastoma trials

Designed to achieve a better understanding of what the best chemotherapy and chemo-immunotherapy drug combinations are to treat neuroblastoma that has recurred or is hard to treat.

Regional Relapse MDTs

Four teams bring innovative trials to youngsters. They ensure that new therapies are considered for all children when cancer has returned.

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Comment by Michelle Mitchell – Chief Executive of Cancer research UK

Some of the stories that stay with me the longest are those of families whose children are receiving treatment for cancer.

I understand the immense heartache parents experience not knowing whether their child will survive, or whether the treatments will leave a long-lasting impact on their health.

This partnership with The Little Princess Trust will provide essential support for our UK-wide network of experimental cancer medicine centres, which aim to develop more effective treatments with fewer side effects – giving the next generation the best possible chance of beating cancer.

These experimental cancer medicine centres ensure that the best clinical trials take place across the UK.

Without them, families would have to travel long distances to get desperately needed experimental treatments for their children.

This uplift in funding to £6.6million will enable staff across the network to do so much more.

They’ll appoint research practitioners to ensure samples are collected for future research, plus a trial development fellow to ensure that they are designing new and innovative studies.

And they’ll develop a programme to amass valuable patient data that can help doctors make better treatment decisions for children and young people.

I know more needs to be done for children and young people with cancer.

We, The Little Princess Trust and our partners are all determined to help researchers develop better, more personalised therapies – and bring forward the day when all children and young people can survive cancer and lead long, healthy lives.

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