THE mother of Chloë Drury – the Purley teenager who was denied medical drugs that may have saved her – has said she is "more hopeful than ever" after a meeting in Parliament last week discussed access to clinical trials.
Debbie Binner, who lost her daughter just before her 18th birthday on February 28, is heartened to see Chloë's story gaining publicity and the main issues hitting the national stage.
Last Monday, a panel of academic, political, pharmaceutical and patient experts came together to start the consultation process for a piece of legislation which will enable patients with life-threatening conditions like Chloë's to have more choice on whether they want to join drug trials.
Called the Halpin Protocol, it calls for a relaxation of regulations which prevent people like Chloë – who was denied access to treatment because she was not yet 18 – getting the drugs they want.
Chloë's mother said: "I am more hopeful than ever that something can change.
"We really want this for Chloë – there has been no improvement in treatment for some rare diseases like bone cancer. and when you think how much technology has improved in that time, it's shocking.
"Cases like Chloë's highlight how broken the system is. When someone is terminally ill, they already have a zero per cent chance of survival. Why then, can they not choose to take these experimental drugs in the hope something might work?"
The Halpin Protocol is calling for a relaxation of regulations governing the way drugs for people with serious and life threatening conditions are developed and prescribed, to speed up innovation and access in this field.
The protocol would allow patients to make their own informed choices about the risks of participation in clinical trials or taking drugs and therapies originally intended for other conditions.
