The DVD of "Extradorinary Measures," starring Harrison Ford and Brendan Fraser, was recently released in Taiwan, where one of the several real-life heroes of the true life story, Dr Chen Yuan-tsong, who is completly left out of the movie and played instead by Harrison Ford, lives and works. The movie is medical drama about a desperate father who finances a cure for the rare Pompe disease that is killing his children.
The movie is based on the true story chronicled in the book ''The Cure: How a Father Raised $100 Million and Bucked the Medical Establishment in a Quest to Save His Children'' wrtitten by Indian journalist by Geeta Anand now based in Mumbai. There is a real John Crowley who really did start a biomedical company to develop a cure for Pompe disease.
But the real guy who developed the cure was not a fictitious Hollywood-arc ''Dr. Robert Stonehill'', played by Ford in the January 2010 relased movie. The real guys were named Drs Canfield, Chen, Byrne and Landy, among others. And don't forget that female scientist at Duke University, too.
We learned this from Roger Ebert's movie review back in January:
"Dr. Robert Stonehill doesn't exist in real life. The Pompe cure was developed by Dr. Yuan-Tsong Chen and his colleagues while he was at Duke University. He is now director of the Institute of Biomedical Science in Taiwan. Harrison Ford, as this film's executive producer, perhaps saw Stonehill as a plum role for himself; a rewrite was necessary because he couldn't very well play Dr. Chen. The real Chen, a Taiwan University graduate, worked his way up at Duke from a residency to professor and chief of medical genetics at the Duke University Medical Center. He has been mentioned as a Nobel candidate."
Ebert also speculates that Dr. Chen and the others mentioned above might have been inspired a more interesting character than ''Dr. Stonehill''. But I suppose Harrison Ford, who also serves as the film's executive producer, isn't the first guy that comes to mind for the role of "Taiwanese Scientist." Thus, the rewrite. Ah, what could've been, said Angry Asian Man on his blog last year.
Despite the big name stars, the movie looks like a glorified made-for-Lifetime movie... where maybe it could've starred, um, Tzi Ma or somebody as Dr. Chen, Angry Asian Man added.
In Taiwan, The CNA news agency, reports on May 25 on the brewing brouhaha:
"Extraordinary Measures” tells the story of parents who formed a biotechnology company to develop a drug that could save the lives of their young children, who have the life-threatening rare Pompe disease. In the movie, based on the book “The Cure,” Harrison Ford plays research scientist Robert Stonehill, who was instrumental in finding the cure, and Brendan Fraser plays John Crowley, the man who raised US$100 million to buck the medical establishment.
John Crowley really is the name of the person who started the biomedical company, but the real Dr. Stonehill who developed the cure is in fact Dr. Yuan-tsong Chen, director of Academia Sinica's Institute of Biomedical Sciences.
Chen was present Monday May 24, 2010 at a news conference held by the Taiwan Foundation for Rare Disorders to mark the debut in Taiwan of the movie's DVD ...and .....he indicated he had mixed feelings watching the movie.
Chen said he began researching a cure for Pompe disease in 1991 after being saddened by the passing of many young lives from the affliction.
“Before I knew it, it had been 15 years,” he said.
“It also surprised me that Hollywood would have made a motion picture out of it, making it a second movie about rare diseases and patients, after Lorenzo's Oil,” he said.
Movie critic Roger Ebert suggested that Harrison Ford, as the film's executive producer, perhaps saw Stonehill as a plum role for himself and ordered a rewrite because he could not play Chen very well.
Regardless of how Hollywood decided to recast Chen, his contribution to helping find the cure is well established.
He developed the treatment with colleagues at the Duke University Medical Center. His R&D was mostly done in the United States, but Chen conducted his clinical trials for the cure — later named Myozyme — in Taiwan, at National Taiwan University Hospital.
Myozyme, which took Chen and his team 15 years to research and develop, was introduced in Taiwan by U.S. pharmaceutical company Genzyme and included as a drug covered by Taiwan's national health insurance (NHI) program in 2005, the foundation said.
Myozyme was sold in Europe and the United States after it was approved by the U.S. FDA and the EU health authority in 2006. It has contributed to saving the lives of over 1,000 patients with Pompe disease, or acid maltase deficiency, worldwide each year, including 34 in Taiwan.
Young Pompe disease sufferers have symptoms similar to muscular dystrophy, the foundation said.
Without a cure, most children with Pompe disease would die before age 2. There is also a juvenile and adult form of the disease that can appear at almost any age, according to the foundation.
Currently, the Pompe disease patients in Taiwan are being given Myozyme and related medical care worth NT$7.9 million (US$245,577) per patient per year under the NHI program, greatly reducing their families' financial burden, the foundation said.
The foundation quoted tallies from the Cabinet-level Department of Health as indicating that there are nearly 6,000 families with rare disease patients in Taiwan, but over 70 percent of them do not have effective drugs or therapies that can help them, the foundation said.
.......Now, following the DVD release in Taiwan and the "mixed feelings" expressed by Dr Chen ...comes a public campaign by a lone American blogger in Taiwan to ask Ford to fess up to why he changed the movie and yellowwashed Dr Chen out of the entire picture, along with the other real-life scientists who were whitewashed out, too.
Danny Bloom, a 61 year old Internet campaigner for better Hollywood movies, writes this letter to the editor addressed to all the major newspapers in Taiwan today (late May 2010). He calls it an "open letter to Harrison Ford" and it goes like this:
Dear Harrison Ford,
As one of the great actors of the 20th century (and maybe the 21st
century as well), you are very much admired by film-goers in Taiwan
and all of Asia -- im fact, all over the world. However, in a movie
released earlier this year titled "Extraordinary Measures," based on
a book titled "The Cure," you inexplicably cast yourself as a medical practioner who comes up
with a cure for the rare Pompe disease. In the script and in the
movie, however, you changed the names and nationality of the real
came up with the cure -- Dr Yuan-tsong Chen of Taiwan, among them -- into an eccentric yet lovable American research scientist named "Robert Stonehill."
By the way, Mr Ford. I saw the movie today on DVD and I loved it. The movie is great! It gets the word out about Pompe, so bravo!
However, Harrison Ford, you need to explain yourself. Sure, movies are movies,
and Hollywood is Hollywood. But to take the real-life medical work
of several scientists and a research team at Duke University and turn it into a medical thriller
that is not really "true" in terms of what really went down is what Hollywood is all about.
I am sure you had the best of intentions, and I am sure you are a nice
guy, and I am sure you respect Dr Chen ane the other players here for their real-life work that
your movie possible,
but do you have anything to say for yourself, now that you know that
some of the players have said they areambivalent about the movie you made of their lives? Dr Chen, among others,
told the media in Taiwan that he had "mixed feelings" about seeing the
movie after its DVD release in Taiwan, although he did say he also loved the movie and felt it is an important and vital one and he is glad you made it.
I am sure the editors of this newspaper or blog will give you space on this
page to answer my letter to you -- in your own words.