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Campaign launched in memory of Purley teenager denied access to cancer treatment drugs

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Last week the Advertiser reported how fun-loving Purley teenager Chloë Drury died of cancer just a month after turning 18. Despite being on the cusp of legal adulthood she had been denied potentially life-saving drugs because of her age. This week we join forces with her family to launch a campaign in Chloë's name to stop this happening again... Only a month after her 18th birthday, Chloë Drury, a feisty, fun-loving teenager, died of a rare bone cancer.

She was denied experimental drugs because of restrictions preventing under-18s taking trial medication.

Chloë was born at East Surrey Hospital on January 25, 1995, and died at her home in Purley at 8.30am on February 28 this year.

For three of those 18 years, Chloë lived with Ewing's sarcoma, a rare bone cancer that occurs most frequently in tall, slim teenagers.

Her mother, Debbie Binner, and stepfather, Simon, are still reeling from their loss, which they think could have been prevented if the rules on teenagers accessing drug trials were different.

"This is a nightmare world where teenagers have their legs chopped off and are subjected to the most outdated and horrific treatment which has not improved for 25 years," said Chloë's mother of her experience of the teenage cancer ward.

"These are children who are cut off right at their prime and there is very little that can be done for them. However, this does not have to be the case – the medicine for young bone cancer sufferers could improve if only the barriers were pulled down. The drugs are out there, it's just teenagers can't access them.

"How many other families will have to go through this before something is done to change these rules?"

Chloë's case received much support from medical professionals at Royal Marsden Hospital in Sutton who all tried to put her on the PARP Inhibitor Trial Study BMN 673.

Despite all their efforts, Chloë was denied access. Mrs Binner even wrote to BioMarin Pharmaceuticals, the company running the trial, explaining her daughter's condition and begging it to lift the restrictions.

A boy with a worse case of Ewing's sarcoma was given a similar trial because he was over 17. He is still alive.

Debbie and Simon remember Chloë as a larger-than-life girl who refused to live as if she had cancer.

Her strength and determination have inspired them to start a campaign to change the situation faced by teenage cancer sufferers and their families.

"It's an incredibly complicated system with layers and layers of bureaucracy," said Debbie.

"It starts with the pharmaceutical companies and goes right up to the top with national regulations – it all needs to change.

"The death toll was the same with leukaemia and breast cancer originally – it was only when restrictions on drug trials were lifted that the medicine started improving. Survival rates for those cancers are now very high.

"We have to do something. How many other teenagers like Chloë have to die unnecessarily?"

More than 500 of Chloë's family and friends attended a service to celebrate her life on Saturday – a party her parents say she their daughter would have been livid to have missed out on. Debbie gave an account of Chloë's life, describing the 'savage grief' of losing half of all her 'hopes and dreams', but also the 'great honour' it had been to be Chloë's mother. Her sister, Hannah, with Chloë's nine-month-old nephew Roman, rode the carriage led by two white horses away from the church with the casket. Five of Chloë's closest girlfriends read out a poem they had written, which included the lines for Hannah and Roman: "To a dying sister, no more beautiful gift could be given. My nephew! I loved him, adored him beyond measure. It's so cruel not to see him grow up at my leisure" – and for Debbie and Simon: "Suspicious parents! what a nightmare – just give us a break! Yet deep down, their concern for me made my heart ache. My cancer was growing, my last throw of the dice." Boys from the John Fisher school in Purley also read out their own tribute for Chloë, as did her favourite school teacher from St Philomena's, John Hoardley. Chloë's beloved white retriever, Ralph, who she chose when she was first diagnosed with cancer, aged 15, also played a starring role as he followed the carriage with the words 'emotional support' on a scarf round his neck. Professor Jillian Birch, a Cancer Research UK expert said: "There remains a problem with getting teenagers and young adults on to clinical trials. "We need to drastically improve this so that we can develop better treatments, help more teenagers and young adults survive the disease and offer hope to patients with harder to treat cancers." Simon Davies, the chief executive of the Teenage Cancer Trust, said: "There's been little to no progress on many of the rarer cancers that affect young people, like sarcomas. "More investment in rare cancer research is urgently needed. We want to work with Cancer Research UK and the pharmaceutical industry to ensure better access to clinical trials for young people with cancer." Dr Harpal Kumar, Cancer Research UK's chief executive, said: "Being diagnosed with cancer is a devastating time for patients, their family and friends. More needs to be done to make treatments more effective and kinder. "Drug development and clinical trials are at the heart of helping more teenagers and young adults both survive cancer and live a full life after their treatment. "Too many young people are left out of clinical trials due to rigid age restrictions and this must change for us to continue to see improvements across all cancer types." A spokesman for the Royal Marsen Hospital, where Chloë was treated, said: "We support the campaign to relax the age restrictions for entry on to clinical trials so that it is more sensitive to individual circumstances while ensuring younger people are protected appropriately and safely."

Campaign launched in memory of Purley teenager denied access to cancer treatment drugs


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