Hemophilia is a rare bleeding disorder. It leads to uncontrolled bleeding, hospitalizations, doctor visits, and the need for expensive medications. Bleeds result in costly absences from work and school.

Receiving care at a federally funded hemophilia treatment center (HTC) is essential. Most hematologists focus on blood cancers or other blood disorders such as anemia. Hematologists at an HTC specialize in bleeding disorders. HTCs provide comprehensive care using a team of specialists.

According to the U.S. Centers for Disease Control and Prevention, a study of 3,000 people with hemophilia “showed that those who used an HTC were 40% less likely to die of a hemophilia-related complication compared to those who did not receive care at a treatment center. Similarly, people who used a treatment center were 40% less likely to be hospitalized for bleeding complications.”

An important partnership

My HTC is a two-hour drive from my home. I have an appointment once a year with my hematologist, but my HTC nurse and other members of the team are available for questions and other issues between visits. My annual visit last October took place via telehealth from a hotel in Orlando, Florida. On the call were the members of my HTC team, including nurses, my doctor, a pharmacist, and a social worker.

Staff at my HTC work with me to help me avoid going to the local emergency room, and they involve me in my own care. I keep two doses of my medications on hand in my refrigerator. During one emergency, my HTC ensured that my pharmacy sent a courier, who drove more than two hours to provide me with my medication on the same day. Through my HTC, I received training to infuse my medication myself.

An insurance navigator provided by my HTC helps me navigate the confusing world of selecting an insurance plan through the HealthCare.gov marketplace. Because most insurance plans do not provide coverage for my medication or my hematologist, we work together to ensure that I have coverage.

The social worker at my HTC guided me to programs to help pay for my expensive medication and continues to provide emotional support. Thanks to my social worker, I have co-pay savings cards with the manufacturers of my medicines. A grant from the Pan Foundation helps to pay my insurance premiums. My HTC pays for my MedicAlert bracelet, which attaches to the band of my Apple watch.

Some HTCs provide dental care and OB-GYN services for women with hemophilia struggling with heavy menstrual bleeding. My HTC is an integral part of my well-being. I am grateful for the comprehensive care I receive there.