The Telegraph
Since 1st March, 1999
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Dying teens win right to use experimental drug

London, Dec. 17 (Reuters): Two British teenagers dying from the human form of mad cow disease won a landmark court battle today to have an experimental drug injected into their brains in a last-ditch effort to save their lives.

The High Court ruling means Jonathan Simms, 18, and a 15-year-old girl who can’t be named for legal reasons, will be the first vCJD sufferers in the world to be treated with pentosan polysulphate — commonly used to treat cystitis.

Health authorities needed court permission to use the drug because variant Creutzfeldt-Jakob Disease had left the teens incapable of making their own reasoned decisions on treatment and it had never been tested on humans before.

“Balancing all the relevant considerations, in my judgment it is in the best interests of Jonathan and (the girl) that this treatment should be carried out,” Britain’s most senior woman judge, Dame Elizabeth Butler-Sloss said in her ruling.

So far there have been 117 confirmed and probable deaths in Britain from vCJD, which is caused by a rogue brain protein and affects mainly young people. But experts fear many more people could be infected with the illness, which has been linked to eating meat from cattle infected with mad cow disease, Bovine Spongiform Encephalopathy.

The judge said the disease was advanced in both teens, leaving them helpless and she was satisfied that any treatment that could be beneficial would be of value to them.

She said it had to be recognised the treatment would not lead to full recovery but that there were possible benefits.

“The chance of improvement is slight, but not non-existent,” she said, adding that both families were deeply committed to the treatment but did not want to prolong their children's suffering. The families, who had been told of the ruling in private, must now find doctors willing to administer the treatment — some have already refused and the court ruling does not compel anyone to carry out the procedure.

Lawyer David Body, acting for the Simms family, said the department of health had agreed to help the families obtain the treatment. Don Simms, Jonathan’s father, said he hoped the treatment would bring benefits.

“This treatment is experimental but it is not an experiment for experiment’s sake. If we do nothing, he is going to die.” Some experts have called for blanket testing of Britons for vCJD to determine the extent of the disease after researchers said up to two million cattle could have been infected in a 1990s mad cow disease epidemic.

The epidemic sent a collective shudder through Britons in the 1990s as vCJD began to claim lives and scientists warned the human toll could take years to fully emerge. The disease is always fatal.

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