Nov 3, 2016

NHF continues to invest its time and resources to ensure patients with hemophilia, von Willebrand disease (VWD) and other rare factor deficiencies have access to the hemophilia treatment center (HTC) integrated comprehensive model of care. Another focus is access to all needed medications for these patients. NHF juggles these needs of its consumers while helping payers mitigate the risks inherent with managing the extremely high costs associated with rare chronic diseases.

Chronic disease management, measured differently than the acute model of care, requires active participation from the providers and patients/caregivers.  Payers generally measure outcomes based on how well the patients adhere to prescribed medication, ER/hospitalization avoidance and, ultimately, total cost of care.

The Comprehensive Care Sustainability Collaborative (CCSC), rolled out by NHF and Impact Education, is a multi-phase project with the ultimate goal of helping to facilitate cost-effective hemophilia management, integrating the HTC model of comprehensive care. 

The first  phase, rolled out in early 2014, facilitated open dialogue between payers and clinicians. This allowed  both sides to truly understand and speak the same language when it comes to deliverables and identification of measurables specific to hemophilia. 

The second phase, now underway, is geared toward data collection through mini regional and national data pilot projects with payers, HTCs and specialty pharmacies, which will enable payers to influence and lower risk. 

So far, the interest level has been staggering. This has been evidenced at several national conferences that CCSC has exhibited at this year, with participation inquiries from several regional and national payers, as well as self-funded plans. 

On Thursday, November 10th, CCSC will be hosting a webinar for payers and providers who want to learn more about participating.


You can also visit to access additional resources, including our published white paper. To learn more, contact NHF Senior Director of Payer Relations Kollet Koulianos:  309.397.8431 or