Comprehensive Hemophilia Treatment Centers Are a Relief for Patients
What was my reaction the first time I encountered a comprehensive hemophilia treatment center (HTC)? Relief!
I couldn’t believe the resources that were available to those fortunate enough to be treated at one. With quality care, emotional and employment counseling, physical therapy, dental health, and school assistance, the HTCs seemed to have it all.
Most people begin their relationship with an HTC by receiving a referral to a hematologist who specializes in bleeding disorders. Having a hematologist with this specialty can make a difference because many others may have not had the training to understand the nuances of diagnosing and treating bleeding disorders. When I went to my first HTC, I was relieved to connect with a doctor who understood bleeding issues and knew that women could get hemophilia too.
I also had a good experience with HTC nurses, who are often the first point of contact at a center. Many times, nurses helped me figure out if I was having an active bleed, and they offered me advice about how to treat it, even reaching out to additional HTC team members, when necessary.
HTCs can also provide social and emotional support, and even career counseling to help patients find jobs and educate employers about bleeding disorders. On my first visit to an HTC, I was surprised to meet a social worker before meeting my hematologist. She checked in to ask if I needed resources where I lived, which was three hours away. And because bleeding disorders can affect relationships and self-esteem and cause anxiety, HTCs can offer therapeutic services.
During one of my visits, I saw a genetics counselor to help me understand my variant and the impact it had on bleeding. Some patients might want to receive genetics counseling if they want to have children.
Physical therapy and dental care are also offered at HTCs. Physical therapists work with injuries and develop strengthening plans to help avoid future injuries and recover from bleeds. And because dental bleeding can be an issue with bleeding disorders, having dental care at an HTC helps to ensure oral procedures are done safely.
HTCs are not just resources for patients; they also serve schools, helping them to develop safety plans for students with bleeding issues, educating teachers about safe activities, and providing guidance in the event of an emergency. And when school is out, they often sponsor summer camps for young people with bleeding disorders that are staffed by HTC employees.
HTCs can be a resource that extends far beyond the traditional patient-doctor experience. As a result, they can greatly enhance the quality of life for the patients they serve.
Of course, not all HTCs are created equal. Some HTCs specialize in pediatrics, while others offer services throughout a person’s lifetime. I have a preference for these kinds of centers, because it was at one of these that I was shown how to self-infuse my factor products, a critical skill.
If I had one critique of HTCs, it is that I believe women still struggle to find good care. While women’s clinics are now available at some HTCs, letting us see our hematologist and gynecologist at the same appointment, which affords them the opportunity to address gynecological bleeding issues together, some women are still being turned away.
For example, some women are denied care because hemophilia in women is not fully appreciated or understood. I know of women who had to leave their HTCs and find private hematologists to receive the care they needed. This reality is changing, however, and I am hopeful that more women will be able to access care for bleeding disorders at HTCs because of the comprehensive care these centers are able to provide. Women deserve access to this amazing care also!
Note: 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 another 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. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.