By Liz Lane, Sky Reporter
The family of a teenage girl who died from a rare form of bone cancer is calling for the relaxation of rules governing who is eligible to take part in potentially life-saving drugs trials.
Despite the pleas of her parents, doctors and politicians, Chloe Drury was refused access to treatment being trialled by American pharmaceutical company BioMarin.
Her family says she was told last September, when she was 17, that she was too young to take part, and that her participation could "jeopardise [her] safety and the integrity of the trial data".
Chloe, from Purley in Surrey, died in February, a month after her 18th birthday. She had finally been allowed on the course to treat her Ewing's Sarcoma, but the cancer had progressed aggressively and it was too late.
Her mother, Debbie Binner, says she felt totally impotent.
Chloe's mum, Debbie, wants age restrictions for drugs trials to be lifted "We were just sitting there watching our beautiful 17-year-old daughter get weaker and weaker, knowing there is something out there she could have had and it just seems totally wrong to me, and not a world that I want to live in that treats young people like that."
BioMarin said in a statement: "Our deepest sympathy goes out to the parents who are grieving the loss of their child. It is precisely because of patients who suffer from devastating rare genetic diseases that BioMarin develops therapies where there are few, if any, options.
"Ewings Sarcoma is a terrible, aggressive disease, and we hope to make a difference in this type of outcome. We are conducting a Phase 1/2 trial in several genetically defined cancers. Not only is this an early stage trial, but it is the first clinical trial that we have ever done with this therapy. It is premature to know if it is safe or effective."
The family wants age restrictions for clinical trials to be lifted. Currently fewer than 20% of 15 to 24-year-olds who have cancer are on one.
Cancer Research UK's clinical research director Kate Law admits the criteria, which sometimes stop teenagers taking part, are not always logical.
Chloe seen meeting Prince William and the Duchess Of Cambridge "Actually for many trials I think there is no good reason. They could either go down, and join the children's trial, or they could go up and join an adult trial. And in fact the committee that I'm responsible for specifically looks at the age range for each new application. So I think we've taken on board some of the concerns that pre-dated even this sad case."
Concerns about the potential compromising of the integrity of a trial is one of the reasons drugs companies are reluctant to bend the rules, as is the fear of being sued if something goes wrong.
Les Halpin, from Tetbury in Gloucestershire, who suffers from motor neurone disease, wants experimental drugs to be available in return for terminally ill patients giving up the right to take legal action if they experience side effects.
He believes such a move would benefit not just the patient.
"The numbers of trials are very low because of the cost of having them and the current regulations put a lot of risk into drug trials which will slow the whole process down. The protocol will allow willing patients to force the pace of drug discovery and bring it much more in line with the pace of technological science."
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