According to a story from Reuters, the drug developer BioMarin is looking to make a name for itself in the hemophilia community in a very unique way. The company has sponsored a disease themed theatrical production centered around hemophilia called “Hemophilia: The Musical.” The company recently hosted the 25 member cast in New York City, where they performed the show.
Hemophilia is a genetic disorder which affects the ability of the blood to form clots, a process that is vital for stopping bleeding after a wound is sustained. The severity of symptoms can vary widely. The disorder is caused by a mutation found on the X chromosome. Symptoms include bleeding for a long time after an injury, risk of bleeding in the brain and joints, and easy bruising. Bleeding in the joints can cause permanent damage and brain bleeding can lead to headaches, decreased consciousness, and seizures. There are multiple types of hemophilia, with the most common types being type A and type B, which are distinguished by having deficiencies in different clotting factors. Treatment involves replacing the missing clotting factor. Drugs that thin the blood should be avoided. To learn more about hemophilia, click here.
Engaging With the Patient Community
All of the performers in the show are hemophilia patients, and the musical is based on their personal experiences as patients. While it may initially seem that BioMarin has little to gain by sponsoring the musical, the decision to do so is part of the company’s longer term strategy to engage with patients. The primary goal is to establish BioMarin’s relationship with the larger hemophilia community.
BioMarin is currently developing a gene therapy for hemophilia, so all of these patients could potentially be future customers for the company if the drug gains approval; it is projected to be extremely costly, with the treatment expected to cost over $1 million per patient.
BioMarin is not alone in the medical field in trying to lure in customers with fun events, awareness raising sponsorships, and perks. It technically isn’t legal for a drug company to advertise for a therapy that isn’t approved yet, but there is significant value in becoming a household name for patients. Other drug developers in the hemophilia field, such as Shire Plc and Bayer AG, have provided hemophilia patients with kayaking trips and summer camps.