How one teen is pushing the boundaries of hemophilia with help from CVS Specialty

Young man with a large backpack looking out above the mountains

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.

Max using some of his test equipment for hemophilia. He grips a yellow ball and smiles while setting up for a blood test.

“CVS Specialty is more than just a pharmacy,” says Joel Helle, Vice President Physician Services for CVS Health. “While most specialty pharmacies only dispense treatments for complex chronic and rare conditions such as cancer, autoimmune disorders and hemophilia, our skilled and trained teams also provide clinical support, education and counseling for patients diagnosed with them.”

CVS Specialty’s 1.4 million patients can also get their eligible medications at a CVS Pharmacy location, or have them shipped to their home, office, college or other location of their choosing, he explains.

Max’s mom, Suzanne, understands the disease better than most. Her brother was born in the early 1960s and suffered severely with painful bleeding episodes caused by the condition.

“The best thing about Ben is that I can call him, email him, text him anytime I have a problem,” she says. “It’s a whole different world now.”

Because Ben has mild hemophilia himself, draws on personal experience to advocate for others. He educates patients and their families about different medications and treatments; he even helps them navigate insurance plans.

“Ben has always been there for me in my journey,” says Max.

“Being able to enable patients like Max live their best quality of life is what makes the work we do in CVS Specialty hemophilia so special,” says Ben. “With the right support and management, our hemophilia patients no longer have to let their condition define them.”

Max agrees. In fact, he’s setting his sights on a new adventure this summer — whitewater rafting.