The movie Extraordinary Measures tells the story of parents who formed a biotechnology company to develop a drug that could save the lives of children who have the rare life-threatening disease known as Pompe.
In the movie, which is based on the book The Cure, Harrison Ford plays research scientist Robert Stonehill, who was instrumental in finding the cure, while Brendan Fraser plays John Crowley, the man who raised US$100 million to buck the medical establishment.
In reality, John Crowley is the name of the person who started the biomedical company, but the real Dr Stonehill who developed the cure is in fact Chen Yuan-tsong (陳垣崇), director of Academia Sinica’s Institute of Biomedical Sciences.
PHOTO: CNA
At an event held earlier this week by the Taiwan Foundation for Rare Disorders to mark the debut in Taiwan of the movie’s DVD, Chen said he had mixed feelings watching the movie.
He said he began researching a cure for Pompe disease in 1991 after being saddened by the deaths of so many children 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 the second movie about rare diseases and patients after Lorenzo’s Oil.”
Movie critic Roger Ebert said that Harrison Ford, as the film’s executive producer, probably saw Stonehill as a good role for himself and ordered a rewrite of the script because he could not play Chen.
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 research and development was mostly done in the US, but Chen conducted his clinical trials for the cure — later named Myozyme — at National Taiwan University Hospital.
Myozyme, which took Chen and his team 15 years to research and develop, was introduced in Taiwan by US pharmaceutical company Genzyme and has been covered by the National Health Insurance (NHI) program since 2005, the foundation said.
Myozyme was sold in Europe and the US after it was approved by the US Food and Drug Administration and the EU health authority in 2006. It has contributed to saving the lives of more than 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 die before they reach two years old. There is also a juvenile and adult form of the disease, which can appear at almost any age, the foundation said.
Currently, Pompe disease patients in Taiwan receive NT$7.9 million (US$245,577) per patient per year in Myozyme and related medical care 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 more than 70 percent of them do not receive effective drugs or therapies, the foundation said.
Three Taiwanese airlines have prohibited passengers from packing Bluetooth earbuds and their charger cases in checked luggage. EVA Air and Uni Air said that Bluetooth earbuds and charger cases are categorized as portable electronic devices, which should be switched off if they are placed in checked luggage based on international aviation safety regulations. They must not be in standby or sleep mode. However, as charging would continue when earbuds are placed in the charger cases, which would contravene international aviation regulations, their cases must be carried as hand luggage, they said. Tigerair Taiwan said that earbud charger cases are equipped
Foreign travelers entering Taiwan on a short layover via Taiwan Taoyuan International Airport are receiving NT$600 gift vouchers from yesterday, the Tourism Administration said, adding that it hopes the incentive would boost tourism consumption at the airport. The program, which allows travelers holding non-Taiwan passports who enter the country during a layover of up to 24 hours to claim a voucher, aims to promote attractions at the airport, the agency said in a statement on Friday. To participate, travelers must sign up on the campaign Web site, the agency said. They can then present their passport and boarding pass for their connecting international
UNILATERAL MOVES: Officials have raised concerns that Beijing could try to exert economic control over Kinmen in a key development plan next year The Civil Aviation Administration (CAA) yesterday said that China has so far failed to provide any information about a new airport expected to open next year that is less than 10km from a Taiwanese airport, raising flight safety concerns. Xiamen Xiangan International Airport is only about 3km at its closest point from the islands in Kinmen County — the scene of on-off fighting during the Cold War — and construction work can be seen and heard clearly from the Taiwan side. In a written statement sent to Reuters, the CAA said that airports close to each other need detailed advanced
WEATHER Typhoon forming: CWA A tropical depression is expected to form into a typhoon as early as today, the Central Weather Administration (CWA) said yesterday, adding that the storm’s path remains uncertain. Before the weekend, it would move toward the Philippines, the agency said. Some time around Monday next week, it might reach a turning point, either veering north toward waters east of Taiwan or continuing westward across the Philippines, the CWA said. Meanwhile, the eye of Typhoon Kalmaegi was 1,310km south-southeast of Oluanpi (鵝鑾鼻), Taiwan’s southernmost point, as of 2am yesterday, it said. The storm is forecast to move through central
RSS