National Hemophilia Foundation

Website provided by National Hemophilia Foundation and its education partners

CCSC is a hemophilia quality improvement and cost management initiative sponsored by the National Hemophilia Foundation (NHF)

  • The aim of CCSC is to provide payers with knowledge crucial for managing the high costs associated with hemophilia and to augment the sustainability of hemophilia treatment centers (HTCs) as centers of excellence by…
    • overcoming communication gaps to increase connectivity between payers and providers
    • disseminating standards of care, quality, and cost management for hemophilia that will provide clarity regarding the value of the HTC integrated care model

A Live Webcast Archive:
Copay Accumulator/Maximizer Programs and Alternative Funding Schemes:
The Unintended Consequences for Patients and Payers Alike



CCSC Hemophilia Response
Tool Kit

A resource for Payers to assure optimal outcomes are achieved at the lowest total cost of care.

Click Here to Download the Tool Kit

Best viewed in Adobe Reader or Chrome.


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 improve the lives of covered members who are impacted by this rare but serious disease.

Kollet Koulianos, MBA, Senior Director of Payer Relations at the National Hemophilia Foundation, served on the planning committee for the Tool Kit. Key learnings from CCSC’s outreach and educational efforts over the last six years were incorporated into the Tool Kit. CCSC was honored to be involved in the development of this project and believes the Tool Kit will have a positive impact on improving hemophilia patient care.

Click here to access MBGH’s Hemophilia Tool Kit.


Pictured (left to right): Kollet Koulianos, MBA, Senior Director of Payer Relations, National Hemophilia Foundation,  Sharon Frazee, PhD, MPH, Senior Vice President of Research & Data Innovation, PBMI, Dawn Weddle, Director of Member Engagement, Midwest Business Group on Health



“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.”


Rebecca Burns, Executive Director, Bleeding and Clotting Disorders Institute





Award-winning White Paper

The initial findings of the CCSC consensus meetings are presented in the following white paper to summarize the collective recommendations of the advisory board and outline action steps for the future.


  • CCSC advisors’ expert feedback and consensus to facilitate cost-effective hemophilia management integrating the HTC comprehensive care model
  • Analysis of the current state of hemophilia care and the benefits of the comprehensive care model
  • Discussion regarding competitive factor pricing and a more thorough understanding of the role of 340B pricing in funding ancillary services provided at HTCs were key components of the centers’ overall “value story.”
  • Recommended HTC- and payer-reported metrics to facilitate information sharing across multiple health care stakeholders

Managed Care Considerations on Facilitating the Timely Diagnosis and Evidence-Based Treatment of von Willebrand Disease

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CCSC at NHF’s 71st Bleeding Disorders Conference

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Advisory Board

Hemophilia Providers

Jeff Blake, MBA

Hemophilia Alliance

Jennifer Borrillo, MSW, LCSW, MBA

Tulane Hemophilia Treatment Center

Becky Burns

Executive Director
Bleeding and Clotting Disorders Institute

Shannon Carpenter, MD

Children’s Mercy Kansas City

Damia Dillard, MCSW

UC Davis Medical Center

Miguel A. Escobar, MD

University of Texas Health Gulf States Hemophilia and Thrombophilia Center

Eric Gray

Indiana Hemophilia & Thrombosis Center

Craig M. Kessler, MD, MACP

Georgetown University

Michael Tarantino, MD

Bleeding and Clotting Disorders Institute

Marisela Trujillo, MSW

University of Texas Health Gulf States Hemophilia and Thrombophilia Center

Payer Experts

Mark Godwin, PharmD, AAHIVP

United Healthcare Pharmacy

James Jorgenson, RPh, MS, FASHP

Visante, Inc.

James Kenney, Jr., RPh, MBA

Harvard Pilgrim Health Care

Maria Lopes, MD, MS

Magellan Health

Scott McClelland, PharmD

Florida Blue

Edmund Pezalla, MD, MPH

Enlightenment Bioconsult, LLC

Vanita K. Pindolia, PharmD, BCPS, MBA

Henry Ford Health System/Health Alliance Plan of Michigan

Rhonda Randall, DO


Troy Ross

Mid-America Coalition on Health Care