THE mother of a teenage cancer victim has hailed a change in the way patients can access new treatments as testament to her daughter's "legacy".
Chlöe Drury, from Purley, died from bone cancer in February last year after she was denied new drugs which may have saved her, because they had an arbitrary 18 years age restriction attached to them.
By the time she reached her 18th birthday in January 2013 and was allowed the treatment, Chlöe's cancer – a rare form called Ewing's Sarcoma – was too far developed and nothing could save her.
Since then, her mother Debbie Binner has been campaigning to the Department of Health (DoH) and pharmaceutical companies to change the way patients with few medical options left to them can try new drugs.
The DoH has now committed to an early-access scheme which will focus on patients who are running out of time and help bring down barriers which prevent them from accessing treatments.
"If this had happened two years ago when Chlöe was ill, it would have made such a huge difference to our journey," Mrs Binner said.
"With this we would have had a much better chance of getting the new drugs Chlöe needed to try. It may have not saved her, but the point is we will never know because she couldn't have them.
"Yet this change is a recognition of all our work and it is really something positive and an amazing move forward."
At a meeting at the House of Commons on Tuesday, Chlöe's story was highlighted to show the effect arbitrary restrictions have on patients and their families.
"It sounds mad but many people within the health system had not even thought about why age restrictions on some treatments are there," Debbie said.
"There's no reason for them, they haven't been checked, and then it becomes embedded in the way drugs are accessed and it takes so much upheaval to get it changed.
"Unless people stand up and shout about it like me, nothing changes."
A ground-breaking article on age restrictions and drug access which is due to be published in the medical journal, The Lancet, has been dedicated to Chlöe.
"The UK is now falling behind the rest of Europe on developing new drugs because of all the layers and different regulations," said Debbie. "There is now a recognition that there has to be a cultural shift, especially within NHS Trust boards, to be more flexible and allow new treatments through.
"It's a legacy for Chlöe and I'm really proud of that."
The scheme will be introduced in April.
