THE campaign in the name of teenage cancer victim Chloë Drury has reached the corridors of power.
The Purley schoolgirl died just one month after her 18th birthday. Because of an arbitrary age restriction, she was denied the drugs which may have saved her from a rare bone cancer called Ewing's Sarcoma.
Since her death in February, her mother Debbie Binner has campaigned tirelessly to have these restrictions removed so patients like Chloë can have a better chance of living.
The Advertiser started a campaign – In Chloë's Name – to raise awareness and support for Debbie's cause.
Now she has joined forces with Lord Saatchi and MP Michael Ellis, who are using Chloë's story to launch a Bill in Parliament and improve the access to drugs for rare diseases.
In a briefing about the Bill at the House of Commons on Monday, Mrs Binner said: "I had the most horrific journey with my daughter and thought I was going mad – that I was the only one who thought treatment for rare cancers was medieval, with no innovation.
"There is nothing more wasteful than children getting cancer in this way. At the beginning of her diagnosis we were hopeful that our beautiful, beautiful daughter would be OK.
"But nothing can prepare you for walking onto a teenagers' cancer ward.
"For Chloë it was too late – the cancer had spread to her lungs and she was put on the standard treatment of chemotherapy, radiation and stem cell transplants, which has not changed or improved for 40 years."
Although Mrs Binner managed to have Chloë put on one trial, she was denied further possibilities because they had been developed for over-18s, despite medical experts saying that the restriction was purely bureaucratic.
Once Chloë turned 18 in January, she was given a new trial, but by that point her cancer was too far gone. She died at home, surrounded by her family.
Maurice Saatchi – a peer in the House of Lords who lost his wife to ovarian cancer – told the meeting how the UK's current health system leaves doctors open to litigation if they try a new treatment, ensuring that cures are not found for rare diseases.
"Doctors cannot deviate from standard procedures for fear of being sued. They can be taken to court and prosecuted for medical negligence," he said.
"However, without deviation, treatments cannot improve; leaving them degrading, humiliating and ineffective.
"This Bill will allow the patient the option of consenting to new types of treatments – to see what works best for them and giving them a chance to survive."
MP Michael Ellis, who put the Bill forward during a ten-minute motion on Wednesday, said the cost of litigation to the NHS had doubled in the past four years; costing the public purse billions.
"I am going to do the parliamentary equivalent of throwing a brick through a window," he said.
A second reading of the Bill will take place today (Friday).Friend to do skydive for charity ONE of Chloë's best friends – Sarah Savage – is raising money for the Teenage Cancer Trust by doing a skydive in October. The charity worked exceptionally hard for Chloë and her family and have helped Debbie Binner in her campaign to have restrictions of drug trials lifted. "Chloe's death had a profound effect on me, and in the hope of raising awareness of this terrible illness, I am doing a sponsored skydive in Chloe's memory," said Sarah, who is planning to train as a nurse in her friend's memory. "TCT was a life-enhancing charity for Chloe and is dedicated to improving the lives of young people diagnosed with cancer, giving them and their families the support and specialist care they need to give them the best chance of survival." Sarah has raised just over £350 so far but is hoping to exceed £500. Anyone who wishes to support Sarah's fundraising challenge for TCT can visit www.bmycharity.com/chloedrury