Father’s relief at £3m vCJD victims study
3:50pm Wednesday 11th February 2009
Holly Mills with her mum, Linda, and dog, Jack, at Dalby Forest
By Mike Laycock »
HOLLY MILLS has survived for more than five years since doctors diagnosed her as suffering from the devastating illness variant CJD – and warned that she had only weeks to live.
Her father, Peter, convinced the 23-year-old is only alive today because of a revolutionary treatment she has been given since 2003, has been pressing for years for research into the drug, pentosan polysulphate (PPS).
Now Mr Mills, of Thornton-le-Dale, near Pickering, has told of his relief after being informed that the Department of Health has finally ordered a £3 million study into all types of vCJD (Creutzfeldt-Jakob disease) and its treatment.
He said he had been asked to sit on an oversight group for the cohort study, which was set to be launched next month and would be led by Professor John Collinge, of the National Prion Unit at the National Hospital for Neurology and Neurosurgery in London.
Mr Mills said the study was the breakthrough he and his wife, Linda, had been hoping for ever since October 2003, when Holly became one of the first people in the world to have PPS pumped directly into their brain.
Holly, who had previously been fit and healthy, fell ill when she was 17. Her parents do not know why she caught vCJD, although they suspect it may have been through eating contaminated beef products more than two decades ago.
The Mills went public on Holly’s condition in 2005 – lifting a High Court ban on her identification – so they could demand research into the drug and its effects on the illness.
Mr Mills said today her condition had remained stable over the years since the treatment started, with her weight remaining constant, and he and Linda believed she had continued to show slight, but significant improvements.
She could make oral noises to communicate with them and used an exercise bike daily, albeit strapped safely into position. Mr Mills said: “It’s not dramatic, but we are hoping that one day, within five years, diagnostics and treatment will be devised that can reverse her illness.”
Neuological expert Ian Bone conducted a study of several patients receiving PPS treatment on behalf of the Medical Research Council (MRC) in 2005.
An MRC report said afterwards PPS was a molecule derived from beech wood which had many properties such as blood thinning, and it was licensed to treat bladder inflammation.
Prof Bone said some of the patients treated with PPS appeared to have survived for long periods, but it could not be concluded the treatment had a beneficial effect, because it was impossible to make direct comparisons with similar, but untreated patients.
Rare disease research
THE Department of Health has confirmed it will fund a three-year, £3 million National Prion Monitoring Cohort study through its Policy Research Programme.
A spokesman said human prion disease remained very rare, but it was possible that the numbers of people affected by variant CJD – the prion disease linked to BSE – might increase.
He said an extensive research programme was seeking to promote early diagnosis and develop treatments for such diseases.
“We have conducted the first clinical trial for prion disease in the UK. We are now launching the National Prion Monitoring Cohort study,” he said.
This observational cohort study would collect data on all patients diagnosed with, or at high risk of developing prion disease, regardless of whether or not they were receiving treatment, and would monitor changes in the progression of the disease during their natural history or in response to therapeutic and other interventions.
Experimental treatments for human TSE (prion)