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



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

Webcast Archives

Home (Survey) Block

CCSC at NHF’s 70th Bleeding Disorders Conference

Upcoming Events

  • CCSC Ideation Meeting (invite only)
    February 25, 2019
    Philadelphia, PA
  • Exhibit Booth at AMCP Specialty Pharmacy and Managed Care Meeting
    March 26-28, 2019
    San Diego Convention Center
    San Diego, CA
  • Exhibit Booth at BlueCross BlueShield 2019 National Summit
    April 29-May 2, 2019
    Gaylord Texan
    Grapevine, TX
  • DIA 2019
    Improving Collaboration and Data Reporting for Integrated Hemophilia Care: Metrics for Quality Improvement/Cost Management
    Tuesday, June 25, 2019 • 10:30am - 11:30am
    San Diego, CA

Stay Connected

Advisory Board

Hemophilia Providers

Becky Burns

Executive Director
Bleeding and Clotting Disorders Institute

Shannon Carpenter, MD

Children’s Mercy Kansas City

Miguel A. Escobar, MD

University of Texas Health Gulf States Hemophilia and Thrombophilia Center

Amber Federizo, RN, MSN, FNP-BC

Hemophilia Treatment Center of Nevada

Barbara Konkle, MD

Bloodworks Northwest
University of Washington

Jennifer Maahs, RN, PNP, MSN

Indiana Hemophilia & Thrombosis Center

Amy Shapiro, MD

Indiana Hemophilia & Thrombosis Center

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

Doug Lohkamp, RPh

Formerly with HCSC Enterprise Pharmacy

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

Troy Ross

Mid-America Coalition on Health Care