As a longtime maker of orphan drugs for rare disorders and diseases that affect small populations, San Rafael’s BioMarin Pharmaceutical Inc. has tried out some unusual marketing methods since it was founded 21 years ago.
The company, led by CEO Jean-Jacques Bienaimé, commissioned an “unscripted” documentary film about its history and also published a book that Debra Charlesworth, its vice president of corporate communications, calls an honest “warts and all” look at its birth and growth.
Even so, BioMarin’s quotidian publicity efforts are typically tightly focused on patients and physicians who use its products.
But BioMarin’s latest creative venture – a musical theater production about hemophilia and other bleeding disorders starring high school students – is truly treading new ground.
Hemophilia the musical
BioMarin is paying for a three-day musical-theater training program in New York in November in which 25 high school students from around the country with hemophilia or other bleeding disorders will rehearse six songs and then put on a “Broadway-style performance” Nov. 12.
The idea for the show came about, said Charlesworth, as BioMarin moved into late-stage clinical testing of a one-time gene therapy for hemophilia A and increased its outreach to the wider community of people with bleeding disorders.
People with severe hemophilia are often limited in the physical activity they can do, and this has a big effect on teenagers in high school, said Charlesworth.
“There are certain sports they really can’t play. Sports are a big part of a high school experience, but so are the arts,” she said.
Though BioMarin had been considering putting together some sort of creative performance around bleeding disorders on its own, when the company learned through its contacts in the community that a Los Angeles boutique agency, Believe Limited, was working on a similar project, it joined that effort.
“The alignment was amazing,” said Charlesworth of BioMarin’s meetings with Patrick James Lynch, the CEO of Believe, who suffers from severe hemophilia A himself.
Believe Limited was created around the idea of making “engaging and entertaining content aimed at people with chronic and rare diseases,” Lynch said. His company had already produced a comedic “mockumentary” web series similar to “The Office” or “Parks and Recreation” called “Stop the Bleeding!” and was working on a film called “My Beautiful Stutter.”
Lynch also spent several years filming a documentary about Chris Bombardier, the first person with severe hemophilia A to climb Mount Everest.
Trained as an actor himself, Lynch wanted to do something live on stage for the bleeding disorders community, particularly after seeing the raunchy musical “The Book of Mormon” with his mother.
“There’s such permission in musical theater as an art form,” said Lynch, pointing out that “Hemophilia the musical” isn’t all that far from actual shows like “Menopause the musical.”
Reflecting on his own experience with hemophilia, and the death from a brain bleed in college of his brother, who also had severe hemophilia A, Lynch wanted to create not just a show to teach people about bleeding disorders, but one that used theater to help kids who suffer from them.
“My brother never identified as having a bleeding disorder,” Lynch said. “He pulled back and he disconnected. That cost him his life.”
Lynch himself missed plenty of social opportunities and friendships, and had a difficult high school experience because of bleeding in his joints and other problems from his hemophilia. His later work as a professional actor in New York helped him reflect on his situation, and he hopes to help other people do the same kind of serious thinking, but earlier in their lives.