vCJD drug hope after campaign by parents

• Controversial drug will get trial after persuasion from Parents of vCJD victim

• Mills family won a High Court ruling allowing drug to be used by daughter

• Parents believe drug has slowed daughter’s disease

Key quote

"The MRC did not originally include pentosan in the trial because the committee on the safety of medicines advised that there was insufficient information to form a rational basis for presenting pentosan for a treatment. At the request of the Chief Medical Officer, we are now ready to collect data about pentosan" - MRC statement

Story in full THE parents of a young woman with the brain disease vCJD have persuaded government researchers to consider trials of a controversial drug which they believe has slowed the deterioration in her condition.

Data on the impact of pentosan polysulphate (PPS) will now be collected by the Medical Research Council (MRC).

The move follows criticism from Peter Mills, whose daughter Holly, 19, has been taking the drug for months following a High Court ruling which allows PPS to be pumped directly into her brain to alleviate the effect of the disease.

He was angry the drug was not included in the MRC’s only trial of drugs to treat vCJD. Although it is not a cure, supporters of the drug believe it can lengthen vCJD sufferers’ lives, as well as improving quality of life.

Jonathan Simms, the first patient to receive PPS, is still alive after two years and is understood to be the longest-surviving vCJD sufferer.

The MRC issued a statement saying that it is in discussion with the families of those taking PPS and has invited them to a meeting later this month.

It said: "The MRC did not originally include pentosan in the trial because the committee on the safety of medicines advised that there was insufficient information to form a rational basis for presenting pentosan for a treatment.

"At the request of the Chief Medical Officer, we are now ready to collect data about pentosan."

Until now the MRC has focused on another drug, quinacrine. However, the MRC said out of six patients approached since it began a trial last autumn, only one has been recruited.

Mr Mills said: "We want to see more research done on pentosan and its effects.

"We are not against any other therapies, we just believe that this therapy should be included."

Until yesterday, Miss Mills’ parents were prevented by a court order from discussing her condition in public, but a successful application from the BBC to have the injunction altered has now allowed them to explain the benefits they believe PPS has brought her.

"She is not 100 per cent now, but she still has a chance to smile on occasions," said Mr Mills. "She still has memories."

Unlike many others who suffer from vCJDs, 18 months after her diagnosis, Miss Mills can still eat normally and be taken out of her home, although she does need 24-hour care.

Her mother, Linda, added: "I hope it will stop any more progression [in the disease]. We could be grasping at straws, but if she stays as she is, she will do for me."