Hollywood 'ignores' true story of cure for disorder

Harrison Ford's latest Hollywood blockbuster, Extraordinary Measures, is described as being "inspired by the true events" of a successful fight against fatal Pompe disease.

But support groups representing the families of those who suffer from the disorder have accused the film's makers of ignoring the European scientists who actually discovered the world's only treatment for it.

Extraordinary Measures, which is directed by Scot Tom Vaughan, premieres in the UK this week. But the Association of Glycogen Storage Disorders (AGSD), which was founded by a Scot whose baby died from the condition, says that while it welcomes the spotlight the film, based on a Pulitzer Prize-winning book, will turn on the disease, the film-makers have "airbrushed" the real story out of the picture.

Allan Muir, the AGSD's UK coordinator, said: "The film focuses on the actions of one highly motivated individual and his collaboration with a medical researcher and is a remarkable story about the man and his quest to find a treatment for his two affected children.

"However, it is not the whole story of the development of a treatment for Pompe disease. The Hollywood version misses the fact that the development of a treatment involved an international Pompe community. This has, to an extent, been airbrushed out of the picture by the movie and the associated book."

Since the early 1990s the AGSD-UK and other international patient support groups have together been closely involved with the research and subsequent development of an enzyme replacement therapy (ERT) for Pompe disease, Muir adds. The International Pompe Association (IPA) was formed for this purpose in 1999.

"We have long worked with a Dutch team of researchers at the Erasmus Medical Centre (Rotterdam). Indeed it was through a grant from the AGSD-UK in 1996 that these trailblazing pioneers proved the principle of ERT for Pompe disease.

"Soon afterwards they carried out the first successful clinical trial and led the path towards a commercial therapy. They did so on a shoestring budget and in the face of indifference from the medical establishment. It is therefore disappointing that no mention is made of their contribution."

The dispute echoes previous rows over the content of Hollywood films, which have been accused of giving an inaccurate portrayal of real events or over-emphasising the US role.

Extraordinary Measures tells the story of John Crowley, a father and businessman who, finding his two children had the extremely rare Pompe disease, gives up his high-flying career to set up his own pharmaceutical firm to develop a groundbreaking enzyme treatment that saves their lives. Ford plays the maverick doctor who, according to the film, develops the cure.

Kevin O'Donnell, an Edinburgh biologist who knows the real Crowley and who has been a leading light in the international community of Pompe parents since the early 1990s, said: "It's good there is a film about Pompe but it's a shame it does not tell the real story."

O'Donnell lost his own son, Calum, to Pompe aged just eight months back in 1993. Then, most children who developed the infant version of the condition did not live beyond their first birthday.

Devastated by his loss, O'Donnell researched the disease in detail at Edinburgh University and then wrote a layman's explanation of the disease for parents across the world. He also discovered that Dutch scientists were trying to develop a cure on a shoestring budget – the disease had been discovered by Dutchman CJ Pompe during the First World War.

Together with parents across the world, the O'Donnell family helped raise tens of thousands of pounds for the Dutch team. One fellow campaigner was Crowley, the American businessman played by Brendan Fraser in the movie, but he eventually split from the European group.

He founded a firm that he eventually sold for more than $100m despite not coming up with a cure, claims O'Donnell. Then the new parent company bought the Dutch science, after the European scientists had proved that ERT worked.

Although Hollywood has now claimed the new cure for America, O'Donnell won't criticise Crowley. "He is a nice guy who went off to do his own thing," he said. "You can't blame him for that. He is one of us, part of the Pompe community, and that is not a club you want to belong to. His children were very ill; still are, in fact.

"But the way they have presented this story is astonishing. It is pants, to use a non-scientific term.

"Having a film is great, it will raise awareness of the disease. But the Dutch pioneers have been ignored, despite the fact their role was the most important. The medicine has 'Made in the Netherlands' written on it. You can't get clearer than that."

The British families have not given up hope that they can correct what they call "historical inaccuracies" in the film – and the book on which it was based, The Cure, by Pulitzer prize-winning journalist Geeta Anand.

History rewritten in Hollywood films

U-571

This blockbuster from 2000 was condemned as "an affront" by Tony Blair. The movie showed the US navy capturing a German U-boat, and the Enigma machine that helped the Allies crack Nazi codes and win the war. The machine was in fact secured by British sailors.

Braveheart

Mel Gibson's 1995 epic won five Oscars, but last year it also came second in a list of most historically inaccurate movies ever. Gibson played Scottish hero William Wallace, in a belted plaid with his face covered in woad – which one historian likened to a movie about the American War of Independence in which the actors wore "modern business suits inside out".

The Patriot

Gibson, accused of xenophobia in Braveheart, offended the English again in this American revolutionary war flick of 2000. He showed British soldiers burning American villagers in their church, a scene actually inspired by Nazi atrocities in France. Ironically, the man played by Gibson is widely suspected of being a slave-owning serial rapist rather than a liberation movement hero. One academic said the movie was to history what "Godzilla is to biology".