Cancer treatments 'not being trialled in children'

Children with cancer could be missing out on potentially life-
saving drugs because EU regulations allow drug companies
 to opt out of running trials in children, cancer experts say.

Since 2012, 62% of approved EU cancer drugs were not
 tested on under-18s.

But cancer scientists say the rules should be changed so
 that adult cancer drugs have to be tested on children.

They are also calling for the age limit for adult clinical trials
 to be lowered to include teenagers.

The Institute of Cancer Research in London, cancer hospital the Royal Marsden and parents of children who have died from cancer say nowhere near enough cancer medicines
 are being trialled in children or licensed for use in children.

A consultation is currently running on the future of EU rules
 on clinical trials, which means there is a chance they could
 be changed.


What happened to Grace?

Grace Kelly was four years old when she died from a very
aggressive tumour in her kidney, just three weeks after she had
been diagnosed, in 2014.

Her mother, Jennifer, who is a GP, believes the regulations should
be tightened to allow more tests of cancer drugs on children to
take place.

"There could have been a treatment for her out there, but we were
told at her diagnosis that her cancer was [terminal]," she says.

She says huge progress could be made in treating rare cancers if
the rules were changed.

"They are not looking at the children right now," she says.

Why can drug companies opt out of trials in children?

The rules, called the EU Paediatric Regulation, which were set up
in 2007, allow drug companies to be granted a waiver by the
European Medicines Agency (EMA) when it comes to trialling
cancer drugs on children.

This usually happens if the drug in question targets a cancer such
as lung cancer that does not affect or is very rare in children.

But cancer researchers and charities say the way a drug works
may mean it could be effective in children - even if it does not
seem to be relevant.

Cancer medicines are changing, and they are often designed to
treat many different types of cancer, which may have the same
genetic target, rather than just one.

So they want fewer waivers to be issued and more trials on
children to take place.

Are drug trials on children really complex?

Doctors have to be very careful when treating children with
cancer, of course.

They will always follow up closely after drugs are given -
 but children with cancer are capable of being treated just
 like adults, often with the same drug doses.

What difference could tightening the rules make?

Prof Paul Workman, from the Institute of Cancer Research, says children are missing out on innovative cancer 
treatments now common in adults.

As a result, he wants the regulations to be updated so that
children with cancer - even if it is rare or terminal - get the 
best possible treatment with the latest medicines.

Prof Louis Chesler, honorary consultant in paediatric
 oncology at the Royal Marsden NHS Foundation Trusts, 
says access to cancer medicines has improved in recent years and more cancer drugs are being developed - but 
there are still improvements that could be made.

"Is there any reason why adult cancer trials can't lower 
their age limits to 16, or even 12?" he asks.

And he adds: "Everyone realises this is a challenge, but
 more incentives are needed for drug companies to make
 a return and to speed up the development of drugs."