World Hemophilia Day: Connecting Patients to Critical Care

UBC provides specialized care to patients with hemophilia

World Hemophilia Day: Connecting Patients to Critical Care

I save lives. Every day.

Normally, I’m not one to brag about my work, but today is different. Today is World Hemophilia Day, and I work on a patient access team, supporting patients living with hemophilia, a bleeding disorder that affects approximately one in every 1,000 people.

UBC manages this life-saving program on behalf of our pharmaceutical manufacturer client. That client has tasked us with a big responsibility that’s also a wonderful privilege ― it’s something I never take for granted.

Left untreated, severe cases of hemophilia can lead to an early death. Thanks to successful treatment options, people with hemophilia live full and healthy lives. However, in the event of an injury or spontaneous bleed (no obvious cause), a hemophilia patient will need medication very quickly.

Several colleagues and I form a team dedicated to assisting these patients, including those who have an urgent need for therapy. The day-to-day pressure of our job is significant, so it’s really important we remain strong and work together to ensure patients with coverage have access to their medication. We connect patients, their caregivers, hemophilia treatment centers, and specialty pharmacies to resources and programs based on an individual patient’s needs. For those who are uninsured or underinsured, we manage the patient assistance program that provides free medication to eligible patients.

While each hemophilia patient is different, many of their needs and concerns are the same. Hemophilia is a genetic disorder, often affecting more than one family member. The disorder has a high frequency among certain populations, including the Amish. My team works with treatment centers in isolated, rural areas to ensure these patients receive their medication as well as infusion training and follow-up support. Many in the Amish community don’t enroll in government programs ― some don’t even have social security cards. For them, the patient assistance program is critical.

Hemophilia affects the clotting property of blood, so even a routine visit to the dentist requires planning and treatments prior to any procedure. Because of this, I get to know a lot about the patients I support. I learn when they’re going to have a baby or a knee replacement. If they’ve had a fall or have been kicked by a horse, as one Amish patient recently experienced, I work with their doctor to make sure they receive their medication as quickly as possible.

Yes, today is a good day for me to brag about my job and to say thank you to our client for the opportunity to serve these patients. Even though World Hemophilia Day occurs just once a year, my team and I will be here for our patients today, tomorrow and every day.