By Georgie Keate
Chloë Drury died one month after her 18th birthday. She had battled a rare bone cancer called Ewing's Sarcoma for three years and lost, leaving behind a devastated family who were dragged through hell and back by the crass bureaucracy of clinical trials.
I first met Debbie Binner, Chloë's mother, a week after her daughter's death. She was restless and manic, jumping from one sentence to the next before pulling out piles of paper work, letters, photos and research documents.
She told me how Chloë had been barred from accessing a new treatment for her bone cancer because of an arbitrary age restriction which came with the trial. Debbie wrote letters to the pharmaceutical company which made the drugs, she persuaded local MP Paul Burstow to lobby the NHS on her behalf, and she recruited Simon Davies from Teenage Cancer Trust to her cause.
All to no avail. Chloë was only given the trial once she turned 18 in January this year. By the end of February, her cancer was too far gone. Nothing could save her. Chloë died in her bed at home with her family and her golden retriever, cared for by NHS nurses who worked tirelessly round the clock.
Debbie described the experience of Chloë's treatment – which started at 15, when she was diagnosed - as "horrific". She was put onto chemotherapy, which kept her bed-bound and forced her to be fed intravenously. She also went though radiation treatment, surgery and stem cell transplants.
"This is a nightmare world where teenagers have their legs chopped off and are subjected to the most outdated and horrific treatment which has not improved for 25 years," Debbie said.
Chloë was only given one drug trial in her three-year illness, according to her mother, and that was only because she fought "tooth and nail for three years, kicking every door possible".
While Chloë went through this gruelling ordeal, an 18 year old boy in her ward made the grade for the clinical trial she was denied. He is still alive.
"Her doctor fought desperately for Chloë to be allowed another trial," said her mother. "The expert opinion is that there are no medical reasons for under 18s not being allowed on trials. It's purely bureaucratic."
Why was Chloë denied the drugs which could have saved her?
Simon Davies, chief executive of the Teenage Cancer Trust, said there was currently a “broken system” whereby young people with rare conditions are overlooked by pharmaceutical agencies, international regulatory bodies and the NHS.
"There are many stages which have to be passed for a drug to even become available in hospital," he said. "In Chloë's case, the clinical trial she needed originated in America and had been used for adults with breast cancer. Scientists realised it would help with Ewing's sarcoma, Chloë's rare bone cancer, and so patients with the disease were also allowed on."
Of course, Chloë was barred, because the trial had only been run for adults and she was just months shy of becoming 18.
"Everyone I've spoken to – medical professors, pharmaceutical companies, politicians, health groups – have said this should not be happening and that something needs to change so that teenagers like Chloë are given a chance to live," said Davies
A report from Cancer Research UK in March 2013 cited the low level of participation in clinical trials as the explanation for the chasm in survival rates between rare and common cancers. Fifty-six per cent of teenagers survive from rare bone cancers whereas most other cancers have an 80% survival rate.
Harpal Kumar, the charity's chief executive, said: "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."
Since Chloë died, Debbie has barely stopped for one minute. She has been up and down the country meeting health experts and regulators, scheming with the Teenage Cancer Trust and shooting off letters to anyone who might listen.
On July 11th, she is taking the matter to parliament for a meeting between politicians, campaigners, oncologists, regulators and pharmaceutical representatives. It hopes to set the agenda on teenagers, rare diseases and clinical trials, and begin to pull down the restrictions which cost lives.
Debbie will be there to tell Chloë's story, to urge the assembled to not get lost in the numbers and to take action to stop the thousands of silent families suffering the same fate.
This is not only a story about one mother's attempt to grapple with losing her youngest daughter – or "one half of all my hopes and dreams, my best friend", as Debbie described Chloë in her funeral address. It's about a growing recognition our current system cannot cope with patients who fall through the gaps. The patients who are not the right age or do not have the 'right' cancers. It does not ensure medicine for rare diseases are properly improved and developed.
You only need to look at how far treatment for breast cancer or leukaemia has come to see other diseases have been left in the dark ages.
Debbie's work has coincided with a handful of high profile figures demanding change in a similar arena. Maurice Saatchi lost his wife to ovarian cancer in June 2011 and launched the medical innovation bill in the House of Lords which went through its first reading in December last year.
Saatchi argues development for rarer diseases has stalled because doctors are too scared of being sued for trying something new.
Les Halpin is another campaigner – he was diagnosed with Motor Neurone Disease in May 2011 and is now bed-bound. He has launched the 'Halpin Protocol' – a legislative blueprint to allow patients with life threatening diseases to have more influence on drug development and trials. One of his biggest targets are EU Directives which are meant to protect patients from being treated as guinea pigs. Yet the rules have gone too far and are arbitrary in many cases.
Paul Burstow will be chairing the round-table meeting on July. He said: "We have identified a gap in the teenage years for certain clinical trials and it is our hope to find a solution. Hopefully the changes will only need to be made to the regulatory system but if it requires a legal change, I will take it up with government."
We have to hope rules, restrictions and regulations are put there to protect us. Yet if Chloë were your daughter, you would no longer believe that to be true. You would want to pull them down.
"I want to use her determination and energy for something good," said Debbie. "There are lots of promising drugs and we need to get access to them more quickly. There is not enough interest; the cancer is very rare so the companies do not make enough money out of it.
"All this potential is wasted, right at the start of their lives. Nothing in Chloë's body changed between being four months before her 17th birthday and four months later when she was 18 – except the growing cancer."
Georgie Keate is a reporter for the Croydon Advertiser. Follow her on Twitter.
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