National Hemophilia Foundation

Website provided by National Hemophilia Foundation and its education partners

Hemophilia Provider

NHF has long since recognized the hemophilia treatment center (HTC) integrated comprehensive care model as the gold standard of clinical management for patients with rare, chronic bleeding or clotting disorders. In recent years, HTCs have found it more and more challenging to access specialty pharmacy contracts due to current trends:

  • Factor coverage is increasingly being shifted from the medical to the pharmacy benefit.
  • Pharmacy benefit managers (PBMs) are acquiring their own specialty pharmacies (SPs) and convincing plan sponsors to allow the PBMs to become the exclusive provider of costly specialty drugs.

These growing threats to the future sustainability of the HTC integrated care model served as the impetus for NHF to launch the CCSC initiative. Join CCSC today to participate in a pilot program, access useful data and reporting templates, or gain insights from clinical and payer experts; all to support the continued success of your organization and improve access and outcomes for your patients and their families.

Featured Resource – CCSC and the Value of HTCs Infographic




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

Benefits of CCSC Participation

  • Overcome communication gaps with payers pertaining to the management of hemophilia patients, role of Federal Drug Discount Program, and value of the comprehensive care model
  • Increased connectivity with payer stakeholders by sharing quantitative data that provides a distinct opportunity for quality improvement and a selling point for payer contract negotiations
  • National recognition for a commitment to quality improvement in hemophilia management