May 15, 2017
By Alex Keown, BioSpace.com Breaking News Staff
BOSTON –Biotech innovator Henri Termeer, the longtime chief executive officer of Genzyme and a pioneer in orphan drug development, has died. He was 71.
According to reports, Termeer collapsed at his home on May 13. Termeer went to work at Genzyme in 1983 and left Genzyme in 2011 when the company was sold to Sanofi for about $20 billion. But, Termeer remained active in the biotech industry after nearly 30 years at Genzyme, serving on various boards of directors and investing in startups such as Arrakis, which launched in February and Artax Pharma.
Launching new companies to develop treatments for rare diseases and other indications in healthcare was something of a passion for Termeer. John Carrol said in Endpoints that Termeer was “focused on shaping the future” and never lost his love of trying to help startup companies to address those needs.
Before launching Genzyme, Termeer got his start at Baxter and then later became the chief executive officer of Cambridge, Mass.-based Genetics Institute, Xconomy reported. When Termeer joined Genzyme, which Xconomy said was struggling at the time, it was the same year at the U.S. Food and Drug Administration implemented the Orphan Drug Act to spur on development of rare diseases. Genzyme became a leader in the field, developing treatments for Gaucher’s, Fabry, and Pompe disease.
Of Termeer’s vision with rare diseases, former Baxter colleague Gabriel Schmergel, told Xconomy that Termeer saw opportunity where others, including himself, only saw problems.
“We were also at GI [Genetics Institute] looking at Gaucher disease,” Schmergel said to Xconomy. “Where I saw only problems–small number of patients, insurance issues–Henri saw the opportunity. Henri just went for it, and that was the key to the magic kingdom for him. He was the guy who opened up the whole orphan drug field. So that’s the creativity he had, and vision.”
Termeer not only had vision when it came to developing therapies for rare diseases, but he also predicted the rise of patient advocacy groups in the field. He once told Xconomy that patient input would continue to become more and more important when it came to drug development.
“In the next 20 years, we’ll see movement in which the patient will become much more involved… It becomes possible now, when we talk about much more specific diseases, and we can communicate with patients, because of technology, because of the Internet. We can find them, they can find each other, and they can get organized,” he said in the 2013 interview.
On Twitter, numerous biotech executives and players have shared the importance of Termeer’s leadership over the years. Carrol captures many of the posts in his article, including Ron Cohen, Acorda Therapeutics ’ CEO, who referred to Termeer as a giant. Sue Desmond-Hellmann, CEO of the Gates Foundation, said 140 characters was not enough to explain why Termeer was an icon in the industry, then shared an article published by the Boston Globe about his career.
