“Ask a Social Worker” is a regular column featuring questions from the community and answers from members of NBDF’s Social Work Working Group. If you have questions for our social workers, send them to [email protected].
Dear Bryn and Lucy,
I am 30 years old and have moderate hemophilia A. I rarely bleed but need to have a tooth pulled and realized that my factor was about to expire. When I called my HTC [hemophilia treatment center] for a refill, they refused my request until I made a clinic appointment. This really made me angry! Even though I missed my last comprehensive clinic visit, I am normally very good about following up. Now I have to postpone my dental procedure and live with this pain in my mouth even longer. Is this common practice or should I change providers?
While we understand the difficult situation that you are in, we believe that your hemophilia treatment center’s request that you are seen in the comprehensive clinic before your dental procedure is not unreasonable.
HTCs exist to provide high-quality preventive care for patients with bleeding disorders. The purpose of these visits is to receive multidisciplinary care including physical, musculoskeletal, psychological, and vocational assessments to ensure that all of these aspects of your health are being appropriately addressed.
The scheduling of at least yearly visits for adults and every six months for children follows the recommendations set forth in guidelines from the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council (MASAC) and the World Federation of Hemophilia.
It is important for HTC providers to see the patients in their care regularly to recognize early signs of joint issues and to intervene quickly if a problem is developing. In addition, it is important for patients and caregivers to be aware of any changes in treatments or access to care.
Another key reason to maintain current comprehensive visits is insurance verification. Some insurance companies refuse to authorize a refill of factor without a current clinic note, usually requiring a visit within the past year. Maintaining compliance with yearly comprehensive visits can avoid delivery delays for important factor medications, especially for procedures.
Most importantly, to safely and appropriately prescribe your factor dose for any procedure, it is necessary to have an updated weight, height, and in some cases, laboratory tests, to determine the appropriate way to manage treatment during a surgical procedure.
Our suggestion is that you contact your HTC to ask if you can be scheduled for a visit as soon as possible or even placed on their waitlist in case an earlier appointment opens up so you can schedule your dental care as soon as possible.
We wish you all the best, and good luck!
— Bryn Dunham, LCSW
Dunham is a social worker at the Hemophilia and Thrombosis Center at the University of Colorado Anschutz Medical Campus and a member of the Social Work Working Group.
— Lucy Ramirez, MSW, LCSW
Ramirez is a social worker at Rush Hemophilia and Thrombophilia Center in Chicago and a member of the Social Work Working Group.