News & Events
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Read MoreCCSC Briefing – Hemophilia Gene Therapy Coverage, Access, and Utilization: Current Perspectives for Health Care Stakeholders
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Results from CCSC-led HTC Focus Group and National Survey
Results of a national survey and focus group that targeted HTC providers and administrators with the goal to create broader awareness of CCSC among HTCs highlights successful CCSC/HTC collaborations as well as access and payer-related issues that CCSC can help address.
Stay Informed on CCSC news, events, and awards
Testimonials
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Rebecca Burns
Chief Operating Officer/Chief Financial Officer
Bleeding and Clotting Disorders Institute“I would like to say thank you to all of the CCSC faculty for their considerable work on this. As an HTC with in house pharmacy, we are constantly facing tightening employer networks. Employers are told by their PBM’s that an exclusive network will save the employer money. What CCSC has done is to open up the conversation with these employers to show that allowing HTCs in network will save them considerable money not only on the pharmacy side but in overall patient management and outcomes vs. an exclusive specialty pharmacy.”
CCSC Advisory Board Members
HTC Advisory Board Members
Louise Baca, MSN, RN
Maine Hemophilia and Thrombosis Center
Jeff Blake, MBA
Hemophilia Alliance
Jennifer Borrillo, MSW, LCSW, MBA
Hemophilia Alliance
Becky Burns
Bleeding and Clotting Disorders Institute
Shannon Carpenter, MD, MS
Children’s Mercy Kansas City
University of Missouri-Kansas City School of Medicine
Miguel A. Escobar, MD
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Sciences Center at Houston
Eric Gray, CPA
Indiana Hemophilia & Thrombosis Center
Maissa Janbain, MD, MSCR
Tulane University, Louisiana Center for Bleeding and Clotting Disorders
Lisa Jacobs, MBA
Georgetown University Medical Center
Craig M. Kessler, MD, MACP
Georgetown University Medical Center
Kristin Maher, MD, PhD
University of Washington School of Medicine; Seattle Children’s – Hematology-Oncology
Mark Reding, MD
Center for Bleeding and Clotting Disorders
University of Minnesota Medical Center
Elizabeth Solomon, MBA, MHSA
Hemophilia of Georgia
Michael Tarantino, MD
Bleeding and Clotting Disorders Institute
University of Illinois College of Medicine at Peoria
Marisela Trujillo, MSW
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Sciences Center at Houston
Michael Wang, MD
Hemophilia and Thrombosis Center
University of Colorado
Angela Weyand, MD
C.S. Mott Children’s Hospital
University of Michigan Health
Tung T. Wynn, MD
University of Florida Health
Payer Expert Advisory Board Members
Melody Bautista, RN, BSN, MPPA
BCS Financial
Sheri Dolan, BSPharm
Illinois Medicaid
University of Illinois at Chicago
Jeffrey Dunn, PharmD, MBA
Cooperative Benefits Group
Mark Godwin, PharmD, AAHIVP
UnitedHealthcare
Marigene Hartker, MD, MBA
UnitedHealthcare
James Kenney, Jr., RPh, MBA
JTKenney, LLC
Maria Lopes, MD, MS
Former Magellan Health
Scott McClelland, PharmD
Blue Cross Blue Shield of Florida
Dana McCormick, RPh, FAMCP
Optum
Sal Morana, RPh, PhD
Alliant Employee Benefits
Jason Parrott, MBA, MSMOB
Vida Health
Edmund Pezalla, MD, MPH
Enlightenment Bioconsult, LLC
Vanita K. Pindolia, PharmD, BCPS, MBA
Emergent Holdings
Rhonda Randall, DO
UnitedHealthcare Employer & Individual
Lauren Vela, MBA
Lauren Vela Consulting
10 years ago NBDF established the Comprehensive Care Sustainability Collaborative or CCSC.
CCSC aims to elucidate the value of the hemophilia treatment center (HTC) integrated care model and overcome communication gaps to connect payers and providers, thereby augmenting the sustainability of HTCs as centers of excellence. In collaboration with clinicians and HTC leadership, CCSC provides education to help payers improve care quality and manage the high costs associated with bleeding disorders.
Patients receiving care via the HTC integrated comprehensive care model benefit...
...from 40% reductions in mortality and hospitalization and a 47% reduction in ED visits compared with those managed in other settings.
References 1. Soucie JM, et al. Blood. 2000;96:437-442. 2. Soucie JM, et al. Haemophilia. 2001;7:198-206. 3. Okolo AL, et al. Haemophilia. 2019;25(3):456-462.
Hemophilia treatment generally involves the infusion of clotting factor replacement products, which represent up to 90% of the member’s total cost of care.
Since these are biologic drugs, prescriptions do not follow traditional dosing. Clotting factor is made in batches and provided to pharmacies in a variety of vial (assay) sizes. Dispensing pharmacies choose the vial size closest to the patient’s prescribed dose, which can lead to over-shipping of product and excess cost to the employer. Learn more about how CCSC is advocating for appropriate assay management to reduce the total cost of care in bleeding disorders.
Charting a Course for Cost-effective, Improved Outcomes in Hemophilia Management: Ongoing Findings and Recommendations from the Comprehensive Care Sustainability Collaborative
Featured Resource
Request Our WhitepaperAbout CCSC
Established in 2013, CCSC is a hemophilia quality improvement and cost management initiative sponsored by the National Bleeding Disorders Foundation (NBDF) in conjunction with Impact Education, LLC (IMPACT).
The primary focus of CCSC is to identify and overcome communication gaps by filling in the knowledge gaps between providers, payers, and purchasers pertaining to the management of hemophilia patients, and other bleeding disorders, and to develop commensurate solutions that advance the sustainability of the integrated comprehensive model of care.
The HTC integrated and comprehensive care management approach and its documented ability to achieve optimal outcomes serve as the initiative’s focal point.
Awards
Midwest Business Group on Health (MBGH) was honored with the Pharmacy Benefit Management Institute (PBMI) Excellence Award in the Quality Improvement Category for their work on the Hemophilia Tool Kit. The award recognizes MBGH for its efforts to provide employers with education, awareness, and turn-key resources to help manage the high cost of hemophilia and…