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Bio Leaders Mourn Passing of Genzyme Exec, Orphan Drug Innovator Termeer

Xconomy Boston — 

Henri Termeer, a biotechnology pioneer and the longtime CEO of Genzyme, has passed away at the age of 71. According to the Boston Globe, Termeer collapsed in his home in Marblehead, MA, on Friday night.

Termeer (pictured) was an important figure in the development of biotech not just in the Boston community, but worldwide as he became an innovator in the field of rare disease drug development, which today is as hot as it’s ever been.

Termeer started his professional career at Baxter Healthcare in the 1970s. Former Baxter executive Gabriel Schmergel recalls meeting him for the first time. “I was immediately impressed by him because you could see, the guy was a star. You could see the spark in him,” Schmergel says.

They stayed in touch and later, when Schmergel was running Baxter’s European operations, he recruited Termeer to head up Germany, which was the largest market outside the U.S. “He took the ball and he ran with it. He didn’t need an awful lot of handholding. He was very creative, very aggressive,” he says.

Schmergel later left Baxter to become the first CEO of Genetics Institute in Cambridge, one of Boston’s early high fliers. One day Termeer called Schmergel and said he was thinking of leaving Baxter to come to Boston to join a struggling company called Genzyme. The company, which was developing enzyme therapies, was losing money and Termeer wanted to help turn it around and get into the emerging field of biotech. He wondered what Schmergel thought.

Schmergel warned Termeer of the challenges he’d face. “I’m going on and on, and Henri is just looking at me, and I see his face kind of darkening. And then I said, if you think you can build a biotech, by all means you should do it. This is where the future is,” Schmergel says. And shortly thereafter, in 1983, Termeer did make the move. It didn’t take long, Schmergel says, before he was running Genzyme and was given free rein to try and fulfill his vision.

That vision was a rare disease drug development giant. Termeer, incidentally, joined Genzyme the year the Orphan Drug Act was implemented to incentivize the development of drugs for rare diseases with no treatment options. He then built Genzyme to develop treatments for such conditions, among them Gaucher’s, Fabry, and Pompe disease. Genzyme grew into a 10,000-employee powerhouse along the way, and Kendall Square became a biotech hotbed. Many of Termeer’s former colleagues went on to start their own companies.

“We were also at GI [Genetics Institute] looking at Gaucher disease,” Schmergel recalls. “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 had his share of setbacks, perhaps most notably a manufacturing crisis that led to a drug shortage and a $175 million FDA fine. Genzyme became vulnerable to a takeover as a result, and Sanofi acquired the firm for $20 billion in 2011. But his impact has been felt worldwide with the rise of the orphan drug industry and the accompanying increase in mobilization and power of patient advocacy groups. A slew of other companies have since sprung up with similar rare disease focuses, leading to dozens of approved drugs for such conditions. And patient groups are now more organized and influential than they’ve ever been, something Termeer predicted in an Xconomy interview with Luke Timmerman in 2013 would only continue going forward:

“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.”

The FDA now, more than ever before, incorporates patient voice into its decision making for drug approvals.

After leaving Genzyme, Termeer found a niche investing in and advising startup companies. He helped start local biotechs like X4 Pharmaceuticals and Lysosomal Therapeutics. He was also on the boards of MIT, Massachusetts General Hospital, Moderna Therapeutics, Verastem, Aveo Oncology, and several other companies. When he spoke with Timmerman in 2013, Termeer sounded like someone who wasn’t slowing down, but enthralled with the advancement of biotechnology and committed to its future.

“There’s never been a more exciting time than the current time,” he said. “I can’t sit down. That’s my great problem. People have used the word ‘retirement’ sometimes. I haven’t quite figured out what to do with that word. I work as much as I worked before. It’s exciting.”

Leaders across the Boston biotech community mourned Termeer’s passing. Here are just a few sentiments below.

Biogen co-founder and MIT geneticist Phil Sharp: “Henri was a transformational leader in biotechnology of orphan diseases. Many children now have … Next Page »

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