Conscience and Courage: How Visionary CEO Henri Termeer Built a Biotech Giant and Pioneered the Rare Disease Industry

by John T W Hawkins

Henri Termeer was one of the first of a pioneering group of business executives who built a disparate group of fledgling companies into a biotech industry that has driven decades of therapeutic innovation. During a 28-year career at Genzyme, including 26 years as CEO, he created a process of drug development that for the first time was patient-centered. He also helped forge biotech's public policy agenda and inspired a generation of entrepreneurs to take on large and important challenges. An extraordinary number of today's biotech leaders were directly mentored by Termeer. His own leadership was He broke rules and took risks, setting ambitious goals and finding novel ways to reach them. In doing so he transformed an industry and brought hope to patients with a range of diseases previously deemed too rare to justify the investment needed to support the development of specific therapies.

In Conscience and Courage , John Hawkins, an insightful analyst of healthcare leaders, reveals the philosophy, principles, methods, and habits of a prominent and successful CEO who defied convention to create an investor-owned global enterprise that put people before profits and improved the lives of thousands of forgotten patients.

Genres: Science, Nonfiction, Business

223 pages, Kindle Edition

Published October 1, 2019

Reviews

[Kevin Luo · Rating 5 out of 5]

To be honest, I owe a lot to Henri Termeer, and this is without even knowing of him or much about him until I read this book. As someone who works in the biotech industry and at the very company that Termeer took the reigns of early on, I did not realize how much of an impact he had on this world. Boston is a booming hub of biotech now and now the industry is so focused on innovation for rare diseases. However, it was not always this way. Termeer began concepts such as putting patients at the center of everything, investing in developing drugs for rare diseases, and sparking conversations about drug pricing and reimbursement plans. I think anyone who is interested in biotech should read this book and see how the legacy that Termeer left behind is still very present. Companies such as Alnylam Pharmaceuticals and Blueprint Medicines that all reside in Kendall Square have a lot of influence from Termeer, as both CEO's were mentored by him. There really is a lot to unpack here but the book is tremendous and highlights how a boy from a small Dutch town ended up changing the world and the future for 60 million rare disease patients all around the world. A very special person indeed, Henri Termeer.

[Nick Russo · Rating 3 out of 5]

I joined Genzyme while David Meeker was CEO, but it was clear how much Henri Termeer meant to the organization. The author clearly did his research to bring to life both the founding of the company and Termeer himself.

The writing wasn’t my favorite (he uses CAPS to emphasize a point), and one particularly frustrating moment is when he ends a chapter teasing a real exploration of Genzyme’s pricing only to reiterate his earlier testimonials for how passionate Termeer was.

In fact, this book does a cursory nod at the discussion of Genzyme’s pricing as well as a very large ethical question of why a mother who clearly runs a rather large risk of having children with Gaucher continues to have children. Instead, it’s an anecdote of how she moved others to donate.

The book does a great job exploring Termeer, but being so narrow, it avoids larger issues that seem inextricably tied in with the world he played in.

Regardless, Termeer was truly a magnificent force.

[Raun · Rating 4 out of 5]

It is very difficult for me to rate this book objectively. I worked for Genzyme from Dec 1996 to Nov 2013 and that experience is a big part of who I am as a person. Henri created an incredible environment, and this book is full of people I know and events I am familiar with. I personally spent very little time around him directly, and only interacted with him a handful of times, but as the book describes, his presence and perspective were everywhere in the organisation no matter what site or country office or plant you visited. But the book could go a bit more into some of the substance of what Genzyme was doing and some of the underlying issues and challenges. Those elements appear, but it really is a biography about Henri and who he was.

[Kathryn Davidson · Rating 4 out of 5]

This book tells the tale of Henri (pronounced Henry) Termeer, a pioneer in the biotech and rare disease space, capturing his warmth and interest in all people (particularly patients and employees) and his prodigious memory. I feel that the book falls short in its analysis of the reason why Genzyme had to be sold. The author states that the issues at the Allston MA plant started in 2009, may have been related to Vesivirus 2117 and could have been mitigated by building a backup facility. However, both the Geel Belgium and Allston MA plants were struggling with Vesivirus 2117 in 2008, pointing to the use of a single-source supplier (a common practice in the industry to ensure consistency and efficiency). If it's true that Genzyme used a single-source supplier, a backup facility would not have averted the crisis the company faced. While it's true that the CEO must always take the blame for any troubles on his watch, that does not mean they're always his fault. Still, despite this shortcoming, the book is well worth the read for anyone interested in biotech, rare diseases, or extraordinary leadership.