Hemophilia the Musical

Foundation Posts, Live Events

Watch how the production came about.
(note: auditions have closed)

Watch how the musical.

By Madeleine Foley | mfoley@artandhealing.org
Communications, The UnLonely Project

When the 25 high schoolers took the stage on Nov. 12 at Off-Broadway’s New World Stages, the audience exploded into applause. It wasn’t just that the teenagers had, in three days, mastered an hour-long, original musical. Nor was it just that the teenagers had come to New York City from around the country, and had formed a visible community in that short amount of time. Every performer on the stage that afternoon suffered from or was a carrier for a bleeding disorder. The music and lines they sang and recited were part of Hemophilia: The Musical, whose script and lyrics were based on the students’ essays. The audience was applauding the students’ perseverance, their strength, as much as their skill.

Hemophilia: The Musical creator and director Patrick Lynch understands the loneliness and isolation that can come from bleeding disorders, a group of genetic disorders which are characterized by an inability to form a blood clot. Lynch himself has severe hemophilia A; his brother, Adam, died at 18 from a hemophilia-related hemorrhage. At the musical’s post-performance talk-back event, hosted by the Foundation for Art & Healing founder Dr. Jeremy Nobel, Lynch explained that he had wanted to break through the stigma of having what’s considered an “orphan disease.”

“Orphan diseases” are defined by the FDA as conditions that affect fewer than 200,000 people within the country. Collectively, however, they currently affect nearly 25 million Americans, making the opportunity for research and innovation scarce. Hemophilia affects around 20,000 Americans, according to hemophilia.org, and is estimated to affect only around 400,000 people worldwide. The vast majority of sufferers receive inadequate treatment, as there is no cure for hemophilia. While there exist effective care for bleeding disorders in the United States, it’s often reliant on lifelong infusions and expensive drug regimens.

But BioMarin, a California-based pharmaceuticals company (and UnLonely Project sponsor), has built a business on developing treatments for rare genetic diseases, often called “orphan drugs.” Their ethos centers on creating drugs that make big impacts on small patient populations. And it was BioMarin at the heart of Hemophilia: The Musical, providing the funding and marketing support. The performance was even live-streamed at their offices, where they are currently developing an investigational drug for Hemophilia A, the most common form of hemophilia.  

Many of Hemophilia: The Musical’s lines spoke directly to the struggle of navigating high school with a serious illness. The students worried that talking openly with peers about their health would brand them as different, as “sick.” They lamented the time spent in hospitals, out of school, away from sports or social events. The loneliness, the social isolation – these experiences were part of having a bleeding disorder, too. In one portion, structured as a high energy quiz show, the actors combatted the (many) misconceptions about bleeding disorders. Yes, girls can have bleeding disorders, they shouted. No, a paper cut isn’t an emergency situation. The students laughed and cheered. For once, it was their stories being centered.

When asked at the talk-back by Dr. Nobel who was excited to meet other people with bleeding disorders, the entire cast raised their hands. Though many of the students had been involved with some sort of bleeding disorder network back home, none had spent so much time, so artistically involved, with such a large group. Hannah James, from Prairieville, Louisiana, fought back tears as she explained how life-changing the experience of working creatively with her peers had been. “They’re my new family,” she said.

JonCarlo Ley, a high school senior from Baltimore, said the cast definitely planned on staying in contact after the show ended. They were all in a group text he said, smiling. They had built a musical together. Of course, they were going to stay lifelong friends.

 

Listen Now!

On the radio: Jeremy Nobel, MD, MPH, Founder and President of The Foundation for Art & Healing, joins host Janeane Bernstein on KUCI 88.9fm

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