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 hope of a healthy life because of his vision and 40 years of creative business leadership. Locally, Henri strongly supported MGH, MIT and other institutes with his philanthropic generosity. He was always available to talk about business or policy and will be deeply missed by his friends.”

Third Rock Ventures co-founder Mark Levin: “Henri has been our leader for as long as I can remember. He was there when we got started, building a biotech company that would build, shape, and change our industry. He was in Washington D.C., when we needed leadership to educate our lawmakers and regulators about who we are and what we are doing. Through all his days at Genzyme and his last few years working with young entrepreneurs in their efforts to build the next ‘Genzymes,’ he was creating our leaders of the future. But most importantly, Henri was there every day to tell us to stay focused on our patients; and if we have that focus, our goals will be clear. That lesson we must never forget. I miss him already.”

MIT chemical engineering professor and longtime Genzyme director Charles Cooney: “It was indeed shock and sadness this morning when I heard of Henri’s untimely death. He was a friend and colleague for over thirty years. I remember well the day I met Henri and an interview quickly became recruitment to attract him from Baxter to lead Genzyme. His vision, passion for patients and energy made it clear that he could lead Genzyme from a start up to a firm that would define the biotech industry. I was on the Genzyme board during Henri’s entire time at Genzyme and consider it one of the greatest privileges in my career to have worked with him. His commitment to improve the lives of patients, to inspire employees to excellence at all levels of the company and to make the community a better place to work and live had so much impact on so many. I miss him dearly.”

Longwood Fund co-founder and partner Christoph Westphal: “Henri was a giant, one of a small group of key co-creators of the biotech industry. He was a dear friend and a mentor to me, and to many in the next generation of biotech. Henri was always positive and optimistic and full of energy and drive. He always put the patient first. Henri was a key inventor of the dominant business model of biotech—focusing on clearly defined, high need “orphan” patient populations.”

Xtuit Pharmaceuticals CEO and former Millennium Pharmaceuticals CEO Deborah Dunsire: “Henri has been a long time trustee at the Museum of Science. He always engaged fully in whatever he committed to. At the Museum of Science, he catalyzed the vision around creating the “Hall of Human Life,” simply asking the question about why, in one of the most vibrant biotech centers in the world, the museum did not speak more to the science of the body and health. He never thought small and his vision of what could be was the catalyst for the complete restructuring of one entire floor in the green wing that became the interactive Hall of Human Life. His enthusiasm and personal involvement drew in many both inside and outside of the biotech community to make the bold vision a reality.

On the business side, when Henri was Genzyme’s CEO and I was Millennium’s, we competed for the acquisition of AnorMed—Genzyme was a hostile bidder and Millennium the “white knight.” Genzyme ultimately bit at a level that Millennium felt overvalued the asset. We backed away, and Genzyme took it.  The back and forth played out in the Boston media, making it seem adversarial. But throughout that time, as we interacted outside of our formal business roles in our various community boards and activities, Henri never lost his graciousness and sense of humor in our interactions. He separated business and personal relationships to allow each to flourish. I always admired his ‘savoir faire!'”

Lysosomal Therapeutics co-founder, president, and CEO Kees Been: “Henri not only had a large impact on my life, he truly touched me. Henri was one of the founders of Lysosomal Therapeutics and it felt like he’d selected me for the job. He made you feel special, investing his own money and entrusting me with a large mission, to develop a drug for patients. His legacy reaches far beyond Genzyme, not just counted in number of patient-lives changed, but having launched many careers in biotech. His memory will last for as long as the Boston biotech community keeps growing.”

Atlas Venture partner Bruce Booth: “Henri was a giant of biotech, with very few peers in the forty-year history of the field. He played a key role in Boston’s emergence as a preeminent global biotech center, and infused everything he did with a deep conviction of serving and helping patients. His life was the essence of ‘doing well by doing good’. The incredible Genzyme diaspora that now leads many biotech companies in the region is a huge testament to his leadership, and his sincere cultivation and mentorship of talent for decades. He will be greatly missed.”

Arrakis Therapeutics CEO and X4 Pharmaceuticals co-founder Michael Gilman: “I’d just gotten to know Henri in the last couple of years through his role as a founder and investor at Arrakis and X4 Pharmaceuticals (where I’m also a founder and a board member). Just had dinner with him last month. Personally, I can tell you that he was truly as warm, kind, thoughtful, and supportive as everyone says. He was utterly sincere in his commitment to patients. He’s rightly recognized as a principal builder of the life science community in Cambridge, but I’d also note that his influence is so much broader than that in that he essentially wrote the book on how to develop and deliver drugs for patients with vanishingly rare disorders that were previously ignored by the industry. Thousands and thousands of patients around the world owe him their lives. That is a hell of a legacy.”

MassBio President and CEO Robert K. Coughlin: “Henri was a true visionary and an exemplary leader. As one of the founders of the modern biotech industry, Henri has changed the lives of patients around the world through his on-going dedication to discovering breakthrough treatments for those with rare diseases. Without Henri and Genzyme, Massachusetts would not have grown into the best biotech hub in the world. Personally, Henri was a friend, mentor, and inspiration for me to keep fighting for patients who still are searching for cures and treatments. He will be greatly missed by me, everyone who knew him, and the patients who he touched even if they never knew his name.”

Bob Buderi contributed to this report.