by Geeta Anand
Dialogue and details are based on John’s recollections of the meeting. The Koncels recall the visit, but not the detail.
Dialogue and details are based on recollections of the Koncels in an interview in November 2004; Chen, in interviews in April 2004; Slonim in an interview in March 2004; and John and Aileen in interviews in 2004.
Dialogue and details are based on recollections of Chen in interview in April 2004, and John in interviews in 2004.
Details of Bristol-Myers’s assistance were provided by Markison and John.
Dialogue and details are based on recollections of Greg Assink, John, and Aileen in interviews in 2004 and 2005.
Chapter 12
Dialogue and details in this scene are based on Chen’s recollections in an interview in 2004, and John’s in interviews in 2004; Brian Markison, in an interview in 2006, confirmed that Bristol-Myers pulled the manufacturing plant off the selling block, but he said the decision was based on several factors, including John’s idea for manufacturing the Pompe enzyme at the facility.
Dialogue and details in this scene are based on John’s recollection in interviews in 2004. Deb and Barry Koncel, who were not in the room when John visited, said in an interview they weren’t aware John stopped by that day.
Details are based on interviews with Martiniuk in 2006, John in 2004, and Emil Kakkis on June 15, 2006, who said he also grew unsure the science would work.
Dialogue and details are based on interviews with Martiniuk in 2006, and John in 2004.
Martiniuk, in a 2006 interview, agreed he didn’t give John regular updates on his work but said it was because John stopped funding his program. He said he couldn’t remember how much of the $180,000 John actually paid, but said he didn’t receive all of the money promised. John said he didn’t send the final check because Martiniuk wasn’t keeping him abreast of his work and he had no idea whether he was making progress toward beginning a trial.
Dialogue and details are based on interviews with Canfield and John in 2004.
Dialogue and details are based on recollections of Canfield in interviews in 2004, and Doug Branch on May 4, 2004.
Quote is based on recollections of Marty Holleran and John in interviews in 2004.
Dialogue and details in this scene are based on recollections of Canfield and John in interviews in 2004.
Dialogue and details in this scene are based on recollections of John and Slonim in interviews in 2004.
Dialogue is based on John’s recollection in interviews in 2004, and Andy Singer’s in an interview on May 10, 2006.
Dialogue and details based on interviews with Doug Branch and Canfield in 2004.
Dialogue and details in this scene are based on recollections of Canfield and John in interviews in 2004.
Chapter 13
Dialogue and details are based on recollections of John and Canfield in interviews in 2004; and Tony McKinney in interviews on February 25, April 21, and April 26, 2004, and again on April 9, 2006.
Dialogue and details are based on the recollections of John in interviews in 2004, and John Frick, in an interview on May 18, 2006.
Information from Dr. Stephen Roth and Sherrill Neff in interviews on January 4, 2005, and interviews with John in 2004.
Information from Roth and Neff in interviews in 2005.
Dialogue and details of this scene are based on recollections of Roth and Neff in interviews in January 2005; and John, Canfield, and Doug in interviews in 2004.
John, in interviews in 2004, said he recalled this conversation with Markison when things were going badly at Novazyme. Markison, in an interview in 2006, confirmed having had this conversation with John.
Canfield, in interviews in 2004, said John didn’t tell him he had mortgaged his house. John, in interviews in 2004, said he put the money in the Children’s Pompe Foundation and brought Canfield a check from the foundation. John said he didn’t want Canfield to know he’d been reduced to borrowing on his house to get money for the company.
Gus Lawlor, in an interview on July 19, 2004, said that when he read the agreement John struck with Neose, he saw it was so one-sided in Neose’s favor that it made him question John’s abilities and whether to even invest in Canfield’s company. It was only when Neose’s Neff agreed to renegotiate the deal that Lawlor moved ahead and invested in the firm. Terms of the Neose deal are based on recollections of John and Neff.
Details from Josh Phillips in an interview on July 21, 2004, and John in interviews in 2004.
Copy of Novazyme business plan from 2000. Dialogue and details in this scene are based on interviews with Josh and John in 2004.
Details based on recollections of Josh in an interview in 2004, and John in interviews in 2004.
Details based on recollections of Dennis Purcell in an interview on November 5, 2004; Lawlor in an interview in 2004; Steve Elms in an interview on May 9, 2006; and John in interviews in 2004.
Chapter 14
Dialogue and details are based on interviews with Canfield in 2004, Hung Do in 2006, and John in 2004. Laurie Easton, interviewed on April 7, 2006, provided additional dialogue and details, as did Hung in interviews in 2005 and 2006.
Canfield shared this view in interviews in 2004.
Chapter 15
Canfield in interviews in 2004.
John and McKinney in interviews in 2004 and 2006.
McKinney in interviews in 2004 and 2006.
Interview with Barry Byrne on April 21, 2004; Raben in an interview in 2005; and McKinney in interviews in 2004 and 2006.
Dialogue and details are based on McKinney’s and Canfield’s recollections in interviews.
Canfield in interviews in 2004, and Hung in interviews in 2005 and 2006.
Canfield in interviews in 2004, and Hung in interviews in 2005 and 2006.
Canfield in interviews in 2004, and McKinney in interviews also in 2004.
Dialogue and details are based on recollections of John in interviews in 2004, and McKinney in interviews in 2004 and 2006.
Dialogue and details of the meeting are based on interviews with Neff, Roth, McKinney, and John in 2004 and 2005.
Dialogue and details in this scene are based on recollections of Canfield and Roth in interviews in 2004 and 2005, respectively.
Dialogue and details in this scene are based on recollections of Canfield and Doug in interviews in 2004.
Chapter 16
Dialogue and details are based on recollections of Gus in an interview in 2004.
Dialogue and details are based on recollections of Gus and John in interviews in 2004.
Gus, in his interview in 2004, said it wasn’t that he disagreed with the investment in the manufacturing plant, it was the fact that John didn’t confer with his board before spending the money that bothered him.
Dialogue and details are based on recollections of Gus and John in interviews in 2004.
Steve, in an interview in May 2006, said he liked the idea at the time because he believed a diversified company made for a safer investment, though in retrospect, he thinks Gus was right that Novazyme didn’t have the resources to handle more than one drug development project.
Dialogue and details in this scene are based on recollections of John; and Canfield, and Dennis Purcell in interviews in 2004; and Steve Elms in an interview in 2006.
Dialogue and details are based on interviews with Roth, Neff, and Gus in 2004 and 2005.
Dialogue and details are based on interviews with John and Dennis in 2004.
Chapter 17
Dialogue and details of this scene are based on interviews with Gus, Lawlor, Dennis, Canfield, Roth, Neff, and John in 2004 and 2005.
Dialogue and details are based on recollections of Pedro Huertas and Gus in interviews in 2004.
Dialogue and details in this scene are based on interviews with Gus, Dennis, John, and Canfield in 2004, and Steve in 2006.
Dialogue and details in this scene are based on interviews with Gus, Dennis, and John in 2004, and Ste
ve in 2006.
Dialogue and details are based on interviews with Gus, Canfield, and John in 2004.
John in an interview in 2004, and Byrne in an interview in 2004.
Chapter 18
Bradley Campbell, in an interview on May 21, 2006, confirmed this account from John and Aileen of how he arranged with his father for Textron to lend its jet to take the Crowley kids on their Make-A-Wish trip.
Chapter 19
Details from Henri Termeer in interviews on May 26 and September 21, 2004; and John and Canfield in interviews in 2004.
Figures are based on recollections of Canfield, Gus, Dennis, and John in interviews in 2004, and Steve in an interview in 2006.
Information from John, confirmed by Termeer in interviews in 2004.
Susan Ferris of BioMarin, confirmed that the stock price soared over $1 billion; John, Gus, Josh, Dennis, and Steve, provided investor perspective.
John, in interviews in 2004, said this was his thinking at the time. Genzyme’s annual revenue from Cerezyme in 2000 was $540 million, though it is now substantially higher.
Dialogue and details in this scene are based on recollections of Canfield and John in interviews in 2004.
Dialogue and details are based on recollections of Jan van Heek in an interview on May 26, 2004; and John in 2004 interviews.
Copy of presentation made to Genzyme; quotes and details of the visit to Genzyme are based on recollections of Canfield, John, and van Heek in interviews in 2004.
Canfield, John, and McKinney in interviews in 2004; and Hung in interviews in 2006.
Copy of presentation made to Genzyme; dialogue and details of visit to Genzyme based on recollections of Canfield, John, and van Heek in interviews in 2004.
John and Canfield, in interviews, recall van Heek pacing as described. Van Heek, in an interview in 2004, didn’t recall this detail, but said it sounded accurate.
Numbers in this scene are based on John and Canfield’s recollections in interviews in 2004; Termeer and van Heek, in interviews the same year, declined to confirm the earlier offers they made for Novazyme, citing company policy of not discussing negotiations. Other dialogue and details here are based on recollections of all four men.
Dialogue and details in this section are based on recollections of Gus, Canfield, and John in interviews in 2004.
Chapter 20
Termeer in interviews in 2004 recalled his thinking.
Bob Mattaliano and Mike O’Callaghan, interviewed on September 21, 2004, relayed the perspective they shared with Henri and others at Genzyme. Termeer recalled their perspective in interviews in 2004.
Termeer shared this perspective in interviews in 2004.
Dialogue and details in this scene based on interviews with van Heek and John in 2004.
Dialogue and details in this scene are based on recollections of John, Gus, Dennis, Josh, and Canfield in interviews in 2004, and Steve in an interview in 2006.
Dialogue and details of the negotiations back and forth are based on interviews with John; Termeer and van Heek, citing company policy, declined to confirm the numbers of the negotiations.
Details of Genentech offer are from John and Canfield in interviews in 2004. Joe McCracken of Genentech confirmed in an e-mail on May 21, 2006 that the deal details are consistent with his recollection.
Bohmer, Richard M.J., and Bradley Campbell. “A Father’s Love: Novazyme Pharmaceuticals, Inc.” Harvard Business School Case 603-048.
Dialogue and details of the meeting are based on interviews with John, Gus, Josh, and Dennis in 2004, and Steve in an interview in 2006.
Josh, in an interview in 2004, said that in retrospect, he thinks it was a great decision to sell. He said he didn’t know at the time how much Canfield was struggling to produce his enzyme with human PTase and kifunensin. If he had known, Josh says, he would have favored selling the company. He said he also didn’t know that John no longer expected to make the timeline to go into clinical trials in September.
Chapter 21
Dialogue and details based on recollections of John and Termeer in interviews in 2004.
Dialogue and details are based on recollections of Hal Landy in an interview on July 20, 2004, and several interviews in 2003; and John in 2004.
Dialogue and details in this scene are based on recollections of Landy in interviews in 2003 and 2004; and John in 2004.
This is John’s impression of the Genzyme management structure, shared in interviews in 2004.
Canfield described his reaction to being left off the leadership team in interviews in 2004.
Based on interviews with John, Canfield, McKinney, Mattaliano, and Mike O’Callaghan in 2004.
Landy described his reaction in an interview in 2004; Termeer and John explained what had happened in interviews in 2004.
Dialogue and details of this meeting are based on recollections of John, Landy, Mattaliano, O’Callaghan, McKinney, Julie Smith, and Bill Fallon, in interviews in 2004 and 2005.
Tape of Today show episode from November 2001, provided by John and Aileen.
Landy, in interviews in 2003 and 2004, described his feelings and actions during and after that first leadership team meeting.
Chapter 22
John provided the information on how much money he, Canfield, and the venture investors made on the sale. Elms confirmed the Perseus Soros part. The actual sale price of Novazyme was $116 million because it was a stock deal and Genzyme’s stock price had fallen in the post-September 11 downturn in the market.
Dialogue and details are based on interviews with Termeer and John in 2004.
Termeer shared this perspective in interviews in 2004. Henri Blair, Genzyme’s cofounder, confirmed this in interviews in 2005.
Information on the children in the trials described by John was confirmed in interviews with Drs. Chen and Kishnani in 2004 and 2006, as well as in interviews with the Koncel family those years. In addition, the trial results are described in this paper: Amalfitano, Andrea, et al: Recombinant human acid alphaglucosidase enzyme therapy for infantile glycogen storage disease type II: Results of a phase 1/11 clinical trial. Genetics in Medicine March/April 2001.
Dr. Kishnani, in an interview in 2006, described the trial design, as did John in interviews in 2004. Even though the trial was designed to include only babies who made a small amount of enzyme, two babies who made no enzyme ended up in the trial. In addition, Kishnani said three babies in the trial were older than six months old. Two of the older babies were eight months old and one was 14 months old at the start of the trial.
Study results described by Dr. Arnold Reuser, John, and Landy in interviews in 2004. The study results were also published in the following paper: van den Hout JMP, Reuser AJJ, de Klerk JBC, Arts WF, Smeitink JAM, van der Ploeg AT: Enzyme therapy for Pompe disease with recombinant human alpha-glucosidase from rabbit milk. Journal of Inherited Metabolic Diseases 24 (2001) 267–275.
Information based on interviews with Reuser, John, and Landy in 2004; also based on interviews with Tiffany House and Randall in December 2004.
Information based on interviews with Tiffany in December 2004.
Information based on interviews with Termeer, Landy, John, and Randall in 2004.
This is the view of the leadership of Genzyme, shared by Termeer, van Heek, John, and Landy in interviews in 2004; Reuser and House disagreed that the approach was impractical and risky, believing it could have been improved over time.
In fact, several patients didn’t do as well when they were switched from the Pharming enzyme to a lower dose of another enzyme made by Genzyme, according to Landy, Tiffany and Randall in interviews in 2004. The Houses blamed the leadership of Genzyme, including John, for making a hasty decision. These patients eventually improved when Genzyme increased the dosage of the new enzyme they received. Hung Do, who worked under Canfield and is now a scientist at Amicus Therapeutics, said in interviews in 2005 and 2006 that in subsequent experiments in recent years, he and others learned that
the Pharming enzyme was more effective in treating humans than appeared in the Mother of All Experiments because of the limitations of animal experiments.
Canfield and John, in interviews in 2004, described Canfield’s view of the various enzyme treatments in 2001; Hung, in interviews in 2005 and 2006, also shared his and Canfield’s analysis of the enzymes back in 2001.
Dialogue and details in the exchange in this scene are based on interviews with Canfield and John in 2004.
Chapter 23
Based on interviews with Mattaliano, O’Callaghan, John and Canfield, 2004 and 2005, and Hung, Mattaliano and O’Callaghan in 2006.
Details of the results and the meeting provided by Mattaliano, O’Callaghan, and John in interviews in 2004 and 2006.
Results described in interviews in 2004 by Mattaliano, O’Callaghan, Canfield, and John.
Mattaliano described his explanation in an interview in 2004; John and O’Callaghan confirmed this is what Mattaliano’s understanding was at the time and what he articulated the day of the meeting.
Canfield, in interviews in 2004, said he agreed with the results of the Mother of All Experiments at the time they were presented. But in the interviews, he said he had later begun to believe his enzyme would have done better if it were given as a continuous infusion into the mice rather than as a single injection. If given as an infusion, the enzyme, after filling the receptors that were attracting it first, might have eventually gotten into the intended target—the lysosomes of muscle cells—in greater numbers.
Dialogue and details in this scene are based on interviews with Termeer and John in interviews in 2004.
Termeer, in interviews in 2004, described the reaction of his medical and regulatory employees to the summit and his decision to support it and speak at it.