Banbury Business

Patient group 'disappointed' at movie

By Maggie Hartford

8:50am Thursday 25th February 2010

PATIENTS suffering from a rare disease will be in Oxford today for a special preview of a Hollywood movie featuring the race for a cure.

Extraordinary Measures, starring Harrison Ford and Brendan Fraser, tells the story of John Crowley's battle to find a cure for Pompe disease, a rare muscle disorder that threatened to kill two of his three children.

Harrison Ford plays the scientist researching a cure, but patients and medical researchers say they are disappointed the film doesn't tell the real story. The preview at the Vue cinema is sponsored by Genzyme Therapeutics, the biotech company which eventually developed a treatment, and whose UK headquarters is at Oxford Business Park, Cowley.

Pompe disease affects up to 10,000 people worldwide. Genzyme's treatment, Myo-zyme, is given intravenously every two weeks, and some of its medical staff will also be at the film preview.

Allan Muir, of the UK Pompe patients' group, whose son, Jamie, has the disease, said he had already seen the film at a press showing. He said: “We would have liked the true story to be out there, but this is Hollywood. It’s good to have more awareness of the disease.”

He said Jamie had started infusions at the age of 15 and was now 20.

He added: “He's quite well — he plays tennis — and the treatment has now stabilised him.”

Genzyme spokesman Steve Bates described the film as 'semi-fictional', saying the real story was even more dramatic.

He said: "It's a simplification of what happened. The reality is that we now market a treatment that works and there are real patients benefiting.

"Four different treatments were being developed at the same time. The one that is the subject of the film was not taken forward."

Genzyme formed partnerships with two research groups, and in 2001 also acquired Novazyme, a company that John Crowley helped to form, based on the work of Dr William Canfield, the scientist who is played by Harrison Ford. Genzyme also had its own product, which eventually proved most effective and the easiest to manufacture, said Mr Bates. The other potential treatments, including Dr Canfield's, never made it to the market. The movie is loosely based on the book The Cure, by Wall Street Journal reporter Geeta Anand. It describes the Crowleys' personal struggle to save their children, and the scientific drama of the drug's development. About 12 patients, their families, carers, doctors, nurses and other healthcare professionals were addressed by Emeritus Prof Bryan Winchester, of the Institute of Child Health, Great Ormond Street.

• Email this page