My girl was judged too young to live

Chloe Drury died aged 17 after being refused access to a trial drug

The Sunday Times 21 April 2013  Chloe Drury died aged 17 after being refused access to a trial drug

CHLOE DRURY’S mother says her teenage daughter was too young to die but, as a result of the inflexible system of prescribing experimental drugs, was deemed too young to live.

The 17-year-old, who had been diagnosed with a rare form of bone cancer called Ewing’s sarcoma, was refused access to a potentially life-saving trial drug because it was available only to patients over the age of 18 and no one was willing to waive the rules.

Despite the pleas of her family, doctors and politicians, Drury, who was of adult size and weight but four months short of her 18th birthday, was told last September that her participation in the trial could “jeopardise [her] safety and the integrity of the trial data”. Drury died in February, a month after turning 18.

“It is hard to describe the sheer physical agony of watching your child die in front of you and knowing there’s something that might help her, but being told you can’t have it,” said Drury’s mother Debbie Binner, 49, a communications consultant.

“We have been left shattered and heartbroken, not just by Chloe’s death, but also by the thought that more could have been done.

“Obviously we knew it was an experimental drug and there was no guarantee it would work, but when you have zero chance, anything is better than nothing.

“There is something very wrong with the system for allowing access to drugs. They kept telling us that if they put her in the trial, it would skew the results, but no one would ever claim responsibility for the decision.”

Drury was one of an estimated 3.5m Britons who suffer from around 6,000 conditions classed as “rare”. There are few licensed treatments for such conditions, largely because the costs of development to pharmaceutical companies dwarfs the likely returns. Drug companies are often loath to allow access to experimental drugs, even to dying patients, for fear of being sued.

Campaigners are, however, hopeful of securing a new approach. Last week, the Halpin protocol, named after Les Halpin, a millionaire financier who is dying from untreatable motor neurone disease (MND), was launched at Westminster.

Halpin has established a group called Empower Access to Medicine and is funding a Right to Try campaign calling for permission for the terminally ill to be used as guinea pigs to test the efficacy of experimental treatments.

Under the protocol, patients like Drury would sign a binding agreement waiving all rights to sue in the event of side effects or death caused by taking the unlicensed drug. Drug companies would be required to make public the results of any such treatments.

In parallel, Lord Saatchi, the advertising tycoon whose wife died in 2011 from untreatable ovarian cancer, has introduced a Medical Innovations Bill with similar proposals.

Drury was 15 when she was diagnosed with Ewing’s sarcoma, which affects around 30 children a year and is triggered by the growth spurt of adolescence. Her best hope lay with PARP-1 inhibition, a new trial therapy which blocks the repair mechanism that keeps cancer cells going. It is manufactured by BioMarin, an American pharmaceutical company, and was being offered to selected patients at the Royal Marsden, the renowned specialist cancer centre with a unit in Surrey, just five miles from Drury’s home in Purley, south London.

Jeremy Whelan, professor of oncology at University College Hospital, who was in charge of Drury’s treatment, argued unsuccessfully for her to be treated with the drug.

Administrators at Royal Marsden backed her case and said last week that they favoured a review of drug-trial age restrictions to make them “more sensitive to individual circumstances”.

BioMarin expressed its sympathy for Drury’s family but said: “This is the first trial we have ever done with this therapy. It is premature to know if it safe or effective.”

Simon Davies, chief executive of the Teenage Cancer Trust, which deals with thousands of cases similar to that of Drury, said: “It is quite outrageous that this kind of thing is happening. There isn’t just one enemy, it is regulators, doctors and health authorities all causing the problem.

“The whole system for developing new drugs is completely broken, and we need to take a more commonsense approach.”

Halpin, who knows he will die before any long-term benefits from his campaign emerge, said: “The MND treatment on offer to me was developed 20 years ago and doesn’t work.

“Look how computers and telecommunications have advanced in that time. Drug innovations simply aren’t getting to patients.”