Alliance Board Update, January 2019

Alliance Board Update

Featured Board Member
By Stacy E. Croteau, MD, MMS, Hemophilia Alliance Board Director, January 2019

We are in the midst of a transformative era for the treatment of patients with hemophilia and other bleeding disorders. The availability of new factor concentrates and non-factor replacement therapy as well as the promise of gene therapy and other novel therapeutics provide an opportunity for tailoring management for our patients to further improve bleed prevention, reduce treatment burden, and enhance lifetime wellness.

As we venture into this exciting time of novel treatments, access to quality, longitudinal, specialty care continues to be of upmost importance for our patients. Our national network of federally-supported hemophilia treatment centers (HTCs) provides an integrated care model for patients with hemophilia, VWD, and rare bleeding disorders with services extending in many cases to individuals with clotting disorders and other blood disorders as well. This network of HTCs not only facilitates expert clinical care, but also leads surveillance and clinical research efforts to further characterize the changing natural history of the burden of bleeding disorders on musculoskeletal health, cardiovascular health, and other co-morbidities. The availability and routine use of factor replacement therapy (and now new therapies) affects both acute and long-term clinical outcomes and influences healthcare needs over the course of a patient’s lifespan. Additionally, the improved recognition of women with bleeding disorders and importance of a multidisciplinary approach to their accurate diagnosis and management has led to the further expansion of HTC services and inclusion of additional members to the core team including gynecology, pediatric gynecology, and adolescent medicine.

HTC Factor Programs are critical to the development and sustainability of HTCs and their specialized care programs for these often complex patients, in particular, the many services and patient touchpoints that are provided by the HTC teams outside of billable practices. The HTC Factor Programs facilitate clinical team outreach to sites remote from the main HTC where patients would otherwise struggle to access these specialty services as well as education on bleeding disorders and their management and advocacy efforts at the local, regional, and national level.

Your board is committed to the bleeding disorder community (clinicians, HTC staff, researchers, educators, patients and families) in 2019 and beyond. I am honored to join this team and further energize the mission to promote the integrated care model of hemophilia treatment centers, advocate for necessary access to healthcare and treatments, support educational programing and awareness, and foster growth in the collaboration among HTCs, payer groups, and research and patient advocacy organizations.

Dr. Croteau is a pediatric hematologist and clinical investigator at Boston Children’s Hospital and an Assistant Professor of Pediatrics at Harvard Medical School, where she specializes in bleeding and clotting disorders. She leads the Hemophilia/VWD program at Boston Children’s Hospital/Boston Hemophilia Center and is the Regional Medical Director for Region I. Dr. Croteau serves as PI for several investigator-initiated and industry-sponsored clinical trials in bleeding disorders. She has published over 20 original research and review articles in peer-reviewed journals and presents nationally and internationally on a number of bleeding disorder topics for both medical professionals as well as the bleeding disorders community.

Also in this Issue…

Notes from Joe
· New Year, New Faces, Same Commitment to Our Members

Washington Update
· We Need YOU for the Alliance Hill Day!
· Telling Your Story Isn’t Always Lobbying

Alliance Update
· Reminder: Recertification Deadline Approaching!
· Please Register for the Spring Meeting!

Team Alliance Contact Information


Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Elizabeth Karan ekaran@feldsmantucker.com 612-202-3240
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@artemispolicygroup.com 202-257-6670
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org 727-688-2568
Karen Bowe karen@hemoalliance.org 717-571-0266
Joel Bellucci webmaster@hemoalliance.org 727-504-0491