When 15-year-old Max Goldman got a bloody nose during his first independent backpacking trek to a boy scout ranch, he knew the consequences could be dire.
“We were up at 10,000 feet, it was really dry. Blood was just pouring over me and I had three different people holding an ice pack and a tissue to my nose. I directed someone to mix factor for me and someone gave me the needle,” Max explains, adding that he had to keep calm or he could be airlifted out.
Max has hemophilia — a rare genetic bleeding disorder that affects about 1 of every 5,000 American males in which the blood does not clot properly. Complications, such as bleeding into muscles and joints, can be painful.
But, Max has an asset in his corner. Ben Martin is a patient advocate for CVS Specialty Pharmacy, which helps patients with about 40 different complex conditions manage their lifelong treatment journeys. Ben has worked with Max since he was a child. He helped Max do his first self-infusion, without his parents, at age seven. Recently, Max learned how to do infusions in both arms.
“Because bleeding disorders are so rare, a lot of the education is about making sure that Max feels empowered and comfortable talking about his disorder and speaking up for himself,” Ben says.
When Max expressed an interest in backpacking, Ben enrolled the help of a CVS Specialty nurse educator to teach him how to keep medication cool, safely store needles and to set up a sanitary space for outdoor infusions.