White House honours Gengzyme

Genzyme Canada is being honored today at the White House for helping to improve the health of people with rare diseases.

U.S. President George Bush is presenting the Mississauga-based company with the U.S. National Medal of Technology.

The medal recognizes the company for "pioneering a business that has led to dramatic improvements in the health of thousands of patients with rare diseases and harnessing the promise of biotechnology to develop innovative new therapies."

Brian Lewis, Genzyme Canada general manager, said’ it’s a tremendous, honor, to receive the prestigious award.

"This award recognizes Genzyme extraordinary contributions to the biotechnology industry and the years of innovation leader-ship," he said. "It is also a mark of respect for Genzyme researchers who work tirelessly to improve the lives of people affected by rare diseases and strive to meet the significant unmet medical needs of people. In Canada and around the globe”
.
Established in June 1996 in Ottawa, Genzyme Canada moved to Mississauga in 1999.

Its Canadian operation, which employs 63 people, is located at 2700 Matheson Blvd. W.

Genzyme was first to develop drugs to deal with several rare and deadly diseases, including cerezyme for Gaucher disease, fabrazyme for Fabry disease, aldurazyme (developed with BioMarin Pharmaceutical) for MPS I disease and myozyme for Pompe disease.

Lewis said that, from the beginning, Genzyme - which has operations worldwide - has focused its energies "on creating break-through therapies that can dramatically impact the lives of patients."

Meadowvale resident Guy Ashford Smith; who’s also head of the organization that rep-resents 20 Pompe sufferers across Canada, said those who have taken part in clinical trials using myozyme have shown "dramatic improvements in their motor abilities."

But the drug is approved in Canada only for infants diagnosed with the degenerative neurological disease.

Ashford Smith and the Canadian Association of Pompe are fighting for approval of myozyme for adults, too, and were in Ottawa several months ago with other groups representing those with rare diseases, arguing for approval.

Ashford Smith said. Canada needs a national rare disease drug policy, such as those in’ the U.S. and Europe."

Genzyme are the ones who've done it," he said, referring to development of the drug that provides relief for Pompe sufferers."And they spent a tonne of money doing it."

But the drug will only be truly valuable when its distribution grows, he argues.

It would cost as much as $500,000 per year for Ashford Smith to receive the drug.