By Dave Hendrick

Newswise — John Hawkins never expected to be life sciences visionary Henri Termeer’s (MBA ’73) biographer.

In December 2016, a retired Termeer invited Hawkins — now vice chairman and board adviser at search consultancy Odgers Berndtson — to his Boston “pied-a-terre,” an event likely spurred by their mutual connection to the pharmaceutical giant Allergan and a series of recent recruitment successes Hawkins had managed with mentees and colleagues of Termeer. The pair had coffee and talked for nearly two hours, and Hawkins had his first extended close-up view of Termeer, a University of Virginia Darden School of Business alumnus who was mentoring more than 46 active CEOs at the time.

“We talked and I just thought, this guy is special.” Hawkins, a UVA alumnus, said. “I found him to be a humble, warm and charismatic person, especially for a highly successful Fortune 500 CEO.”

Months later on 12 May 2017, Termeer died unexpectedly. At the ensuing memorial service on the campus of the Massachusetts Institute of Technology, where Termeer was a longtime member of the board’s executive committee, Hawkins observed guests who had come from across the world to celebrate Termeer’s life and work. He listened as six eulogists, from a Nobel Laureate to Termeer’s 16-year-old daughter, praised the life-saving, visionary work of a man credited with co-fathering the modern biotech industry and pioneering the so-called orphan drug industry. Also called the rare-disease industry, the space is now a $50 billion industry. In 1983, when Termeer joined Genzyme, it did not exist.

At the time of his death, Termeer was known as a generous philanthropist and trusted adviser to scores of executives and organizations. He was also credited with playing a significant role in Boston’s rise into the epicenter of global biotechnology.

Hawkins, who had long considered writing a book, decided he had found a worthy subject, a largely unsung hero who embodied unique and exemplary leadership traits — someone whose life carried lessons for anyone interested in leadership, life sciences or human character, in general. The result of the two-year project, Conscious and Courage: How Visionary CEO Henri Termeer Built a Biotech Giant and Pioneered the Rare Disease Industry, was published in October.

An edited transcript of a recent conversation with Hawkins follows:

Can you describe Termeer’s impact and influence?

Termeer was a guy whose life has touched or will touch millions of people. The rare-disease community

sounds like it would be a little corner of medicine. In fact, if you aggregate all of these genetic, inherited disorders that result in these rare diseases, it’s the largest therapeutic category in medicine, bigger than oncology, allergy and cardiovascular, to name a few.

So when Henri joined Genzyme in 1983, 10 drug products were on the market to treat rare diseases, and they were products that had been developed by Big Pharma to treat other diseases that just happened to work. But there was never an a priori purpose in attacking a specific rare disease. The reason for that is there was no incentive for companies to do that.

Gaucher is a good example. Gaucher disease afflicts approximately 5,000 patients worldwide. Who was going to spend $500 million to develop a drug for Gaucher? Nobody. People thought he was absolutely crazy. So one of the things I loved about this guy, and everybody else did, too, is he took risks, but especially for the benefit of patients. He was all about patients. It was core to his whole leadership style and the way he approached his day.

Pushing forward with the drug to treat Gaucher is referred to in the book as one of the gutsiest calls in business history. Why?

The drug to treat Gaucher, glucocerebrosidase, was unproven, and had only showed results in one patient. A year’s supply required 22,000 postpartum placentas per year, and there are about 2,000 patients in the United States. Who’s going to pay for that?

His own scientific advisory board argued against pursuing it.

So there was this massive supply issue, this massive cost and reimbursement issue, and then the fact that the first clinical trials weren’t showing results.

But Henri had seen this boy. He said this drug works, I can see it with my own eyes. He contravened the advice of his CEO and his scientific advisory board.

It’s hard to think there’s ever been a more gutsy decision — to move it forward.

How would you describe his leadership style?

He was very unorthodox. Personal responsibility was very important to him.

While he was laser focused on doing the right thing by patients, he was a capitalist, and he was a tough businessman.

He would end every conversation with mentees, after giving them advice, saying, “But it’s your responsibility.”

He hated structure. He didn’t like strategic planning, he didn’t like org charts. The way Genzyme ran for the first 15 years of the business, decisions were made in less structured ways. He created a culture that allowed people to take license to do things, but you were accountable for what you did.

Termeer is quoted in the book describing Darden as “lots of work and lots of fun,” and he actually credits his experience at the School with his decision to permanently immigrate. What did Darden mean to him?

I think it was important. This was his first network, so he was very fond of this place. Henri was married and many people weren’t, and he was one of the few international students, so he was a little different.

It was clearly important to him. He came back to talk to students and he donated to Darden.

Termeer’s time leading Genzyme was cut short after a contamination crisis led to a $20 billion takeover from Sanofi. Do you have a sense of how Termeer viewed the fallout?

It all started in June 2009 when a contamination of his primary plant was discovered. They had to take this massive site back to studs. It was a devastating period for him because he took it so personally and it was so avoidable. This was a Fortune 500 company, and they didn’t have a backup site. It was a single source site for several of Genzyme’s most important rare-disease products.

He didn’t shirk the responsibility or put it off on someone else. He accepted it, but it was a very tough couple of years. And the thing that made it doubley tough is the patient supply was interrupted, and these were the people he had devoted his life to. So for him to have to call these people and tell them they were out of stock and they would have to cut back their dose, it was devastating.

And the financial crisis is happening simultaneously, and he’s the chair of the Federal Reserve Bank of Boston during this period. The CEO of the Boston Fed says Henri’s life was being completely upended, but you never would have known it. He was able to compartmentalize beautifully.

They fixed the problem, and the effort that went into the turnaround was enormous, but the loss of momentum and the damage done to the company was unassailable.

Why do you think Darden students, or future business leaders, should know Henri Termeer?

Somewhere very high on the list has to be, “It’s your responsibility,” which is what he would always say to the people he mentored. He was very much into accountability and personal responsibility.

He was the ultimate human capitalist. He really understood the value of people and was just amazing at getting the best out of people. Some environments see human talent as fungible, Henri saw it as the opposite. He was in it for the long haul with everybody.

Another aspect is that life and business are about more than money. The things he did and the way he lived were as governed by doing the right thing and conscience as they were around delivering earnings per share. He was very focused on doing the right thing at all times, always placing patients before profits.

About the University of Virginia Darden School of Business

The University of Virginia Darden School of Business delivers the world’s best business education experience to prepare entrepreneurial, global and responsible leaders through its MBA, Ph.D., MSBA and Executive Education programs. Darden’s top-ranked faculty is renowned for teaching excellence and advances practical business knowledge through research. Darden was established in 1955 at the University of Virginia, a top public university founded by Thomas Jefferson in 1819 in Charlottesville, Virginia.