A MOTHER who says her 18-year-old daughter might still be alive if age limits on cancer drugs were scrapped, will tell her heartbreaking tale to MPs and health chiefs.
Chloë Drury, from Purley, died on February 28 after suffering the rare bone cancer Ewing's Sarcoma. She had turned 18 just a month before.
She had been refused access to new drugs because of a ban on its clinical trial for anyone under the age of 18.
A campaign – In Chloë's Name – was set up by the Advertiser with the girl's family, MPs, health experts and cancer charities like the Teenage Cancer Trust (TCT).
Chloë's mother Debbie Binner is now taking the campaign to Parliament on July 11 where her story will be part of a meeting which intends to set the national agenda on teenagers and clinical trials.
Attended by senior MPs, top oncologists, health regulators and eminent cancer campaigners, Mrs Binner will open the meeting with a talk explaining what happened to her daughter.
"It's so important that we keep Chloë at the front of this campaign," said her mother. "So often scientists or researchers get lost in the data and forget the emotional element.
"I want to try and make everyone at the meeting realise the impact a young person's death has on friends and family.
"It gets worse as time goes on – you just miss her more and more. Her friends are desperately trying to do something in her name to help and are raising thousands of pounds for charity.
"We need this campaign to get the system working for patients with rare diseases, it's so inflexible and cruel."
The meeting will discuss why clinical trials are routinely restricted to over 18s, why there are delays to patients accessing new drugs and what can be done to increase drug development for rare diseases, especially in teenagers.
Chloë's doctors and Simon Davies, the director of TCT, lobbied hard to get her access to the clinical trial. Despite all their efforts, they were continually turned down. A boy with a worse case of Ewing's Sarcoma is still alive after he was given a similar trial because he was over 17.
