Collaborative care: Finding the right hemophilia treatment center

Last updated June 3, 2024, by Cazandra Campos-MacDonald
Fact-checked by Patricia Silva, PhD

Ports. Factor. Infusions. Joint bleeds. Inhibitors.

When my first son, Julian, was born and diagnosed with severe hemophilia A in 1996, these words struck terror in my heart. I had a beautiful newborn son. But instead of just dealing with early morning feedings and changing diapers, I now had to learn about a bleeding disorder I had never even heard of before his birth.

While clinicians helped my husband and I get basic information regarding Julian’s condition, it was the connection to the local bleeding disorder chapter that was key to understanding the depth of what we were dealing with for Julian.

The most crucial task in the early weeks of his diagnosis was finding the best physician to take care of our son. And in talking with other parents of children with hemophilia, we also learned how important it was to connect with a hemophilia treatment center (HTC) to ensure we had a team of people who understood treating hemophilia.

What are HTCs?

HTCs are specialized federally funded medical facilities dedicated to the comprehensive care and management of individuals with hemophilia and other bleeding disorders. There are approximately 140 centers located in cities across the United States. It is estimated that roughly 80% of patients with a bleeding disorder are cared for at an HTC.

HTC teams often include:

• physicians
• nurses
• social workers
• hematologists
• orthopedists
• physical therapists
• genetic counselors
• dentists.

The HTC team’s multidisciplinary approach helps families manage their child’s bleeding disorder. Most patients have an annual appointment at the HTC that helps the team and family decide on a treatment plan. From regularly scheduled infusions to a protocol to use during a bleed, the annual appointment is crucial for managing a bleeding disorder. Regular care such as physicals, sore throats, and viruses must be managed by a family doctor.

The primary goals of HTCs are to prevent and treat bleeding episodes, improve patients’ quality of life, and offer the latest advancements in treatment options, including gene therapy.

An advancement in treatment for an inhibitor changed the course of my youngest son Caeleb’s life. Caeleb also has hemophilia A. The body’s production of inhibitors, or neutralizing antibodies, against the infused clotting factor in replacement therapies is a severe complication. This complication makes treating bleeds difficult — and treating Caeleb’s bleeds was almost impossible. The Ted R. Montoya Hemophilia Program and Treatment Center in Albuquerque, New Mexico, is the HTC that helped my son and our entire family find ways to work with the inhibitor.

Caeleb, now 18, was lucky enough to receive a treatment that, at the time, was in the early stages of discovery for hemophilia A. Not all HTC physicians would have tried it and I am grateful our HTC thought outside the box. It was a step taken that allowed my family to live our lives without hemophilia being the center of our world.

Ultimately, when looking for an HTC, you need one that fits your family well.

When choosing, ask yourself:

• Is it accessible? How many hours is it from home?
• What is the personality of the HTC team? Is it kind and compassionate or rigid?
• Most important, do they listen and include the family in decision-making?

HTCs offer many services that you can decide whether or not to use. Here are some other things to consider to help you find the right HTC.

Location

The Centers for Disease Control and Prevention has an HTC finder, which allows patients and families to search for the HTC closest to their home. It is also a great tool to use when traveling. Knowing the location of the nearest HTC is imperative when away from home.

There have been numerous times when having the number of the local HTC while traveling has been helpful, especially in the early days of infusing my sons. It was reassuring to know I had a backup plan just in case.

Psychosocial care

HTCs don’t just focus on patient care. Social workers are vital in offering emotional and social support for a family living with hemophilia. They can help connect patients and their loved ones with support groups and activities for people with bleeding disorders, along with local, regional, and national events and workshops. Social workers are also usually good at working with young people as they try to find their way in the world with chronic illnesses.

Personalized treatment plans

Annual HTC visits allow patients and providers to talk about specific needs. A personalized treatment plan is created for each patient, which may include factor replacement therapy, prophylactic treatments, and management of acute bleeds.

Attention to each patient’s needs is critical to their care — from managing an infusion schedule that may be more intensive during basketball season to a routine of prophylactic treatment. All circumstances should be given consideration to help each patient effectively manage their bleeding disorder.

Education and advocacy

Expect every visit to the HTC to be educational. Not only are the patient and family given information about the basics of identifying and treating a bleed, but they also teach parents how to infuse their children and can instruct patients on self-infusion. Each visit also allows families and patients to advocate for themselves in a controlled, safe environment.

Julian and Caeleb learned to speak up and ask questions during HTC appointments. Advocating for themselves has given them a voice that surpasses any conversation regarding their health. They are confident in speaking out for themselves and others, and the HTC has helped them tremendously with this skill.

New treatments

With the advent of longer-lasting factor products and medications given subcutaneously to prevent bleeds, the treatment landscape has changed, providing people with bleeding disorders a new outlook on their lives. This, together with gene therapy, which represents a significant advancement in treating hemophilia, offers the potential for long-term control or even a potential cure.

HTCs play a crucial role in the administration and monitoring of gene therapy. They ensure patients are suitable candidates, provide the therapy in a controlled and safe environment, and offer ongoing monitoring to assess the therapy’s effectiveness and manage potential side effects.

HTCs also participate in clinical trials for new gene therapy treatments, giving patients access to cutting-edge therapies.

The right fit

When Caeleb was in the middle of years of complications from an inhibitor, my family relied heavily on the HTC. I felt like we were in the best HTC for Caeleb’s care. One day, at an appointment, his hematologist told me he was leaving the HTC. I broke down in tears, surprising myself.

Caeleb’s hematologist knew the intricacies of Caeleb’s condition, and he knew about each member of our family. He knew how I was feeling when he walked into Caeleb’s hospital room. He noticed the stress weighing on my husband, who always had a brave face and calm demeanor. He saw my son as he endured pain and bleeds, but saw past the medical complications and truly loved my boy.

He was like a favorite uncle who attended every band concert. The nurses and social workers were the aunts who always sat and listened to stories about trains and dinosaurs.

While they are not as present and needed in our daily lives as they were at one time, one thing is for sure: They are my family.

Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.