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Last Updated: Saturday, 27 January 2007, 01:21 GMT
'The extra months meant a lot to us'
Children with a wide range of diseases, including cancer, are set to benefit from new European Union legislation which will mean all drugs developed for adults must be investigated to see if they can also help children.

Nick Palmer aged 11
Nick began to have trouble walking

Richard Palmer, whose son Nick died of a rare spinal cancer 11 years ago, has been leading calls for more research to focus on the needs of children.

Now chair of the National Alliance of Childhood Cancer Parent Organisations, he welcomes the EU move.

"Nick developed a spinal cord tumour, which was diagnosed when he was 11.

"The tumour was crushing the nerves running down the spinal cord, which meant he couldn't walk.

"We went through the whole gamut of treatment.

"Nick had a 12-hour operation in a bid to remove the tumour, which wasn't successful. He also underwent radiotherapy, which again was unsuccessful."

'Meant a lot'

The family then heard about a trial of a new brain tumour drug which might help Nick.

As he had reached the age of 12, he was eligible to be accepted onto the trial of Temodal - but his family says he would not have been if he had been a year or two younger.

Richard said: "He was on the treatment for a year.

Nick after treatment
Apart from his physical symptoms he was able to have a normal life
Richard Palmer

"It gave him about nine months of good quality life. That meant a lot to him and to us.

"Apart from his physical symptoms he was able to have a normal life. He could talk to people and he loved drawing - it was how he expressed his feelings.

"As a family, with a cancer drug, you're always looking for a cure. But you're also looking to buy some good quality time."

Nick died, aged 13, in 1995.

The information gained from Nick's involvement in the research has since been used to help understand how to help other children with his cancer.

During the course of Nick's illness, and since his death, Richard - who had previously worked in the pharmaceutical industry - became involved in support groups for parents of children with cancer.

The alliance now also plays a role in shaping guidelines on childhood cancer care, including being part of the National Institute for health and Clinical Excellence committee which drew up new treatment guidelines last year.

Richard welcomed the new law.

"The intent is to make sure any drug being developed for adults that may have an application to benefit children will have to be at least looked into.

"Twenty-five per cent of children with cancers won't be alive after five years.

"The only way we can change that is with new science."


SEE ALSO
Children's drug treatment boost
27 Jan 07 |  Health
'Tailor child cancer care' call
24 Aug 05 |  Health

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