HFA News & Notes

Recall of Crickit® Convenience Kits

Click here for FDA recall North American Rescue, LLC Announces A Follow-Up to the Recall of Crickit® Convenience [...] Read More >>

WFH appoints John Bournas as new CEO/ ED

Click for link to WFH Montreal, Canada, January 10, 2012 — The World Federation of Hemophilia is pleased to [...] Read More >>

U.S. Department of Health and Human Services releases Essential Health Benefits Bulletin

On Monday, Dec. 16, the U.S. Department of Health and Human Services (HHS) released a bulletin outlining guidance [...] Read More >>

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North Carolinians mount Raleigh effort for restored community supports

(Raleigh NC) It’s not about what happens when thing do go as one might hope, it about how one responds. HNC mounted it second annual lobby day bring together several dozen consumers from across North Carolina to press lawmakers on several counts. Amongst the concerns presented by community members were recent changes that cap payments from the state’s high risk pool at $100K total annually for any person with hemophilia. In the 2008 legislative session HNC vocally support legislation that shifted away from guaranteed issue for health insurance policies issued in the state, believing the legislation would better serve the local bleeding disorders community by containing costs. The measure proposed passed and became law upon receiving Governor Easley’s signature. This original legislation did not include the $100K cap, but the administrative agency added the provision for fears that the community could be bankrupted by demand.

In addition to efforts to lift the caps, HNC rallied consumers around a carve out in a proposed drug list for factor concentrate and allied therapies, and restoration of funding for the state’s Hemophilia Assistance Fund.  In spite of difficult financial circumstances, HNC deserves tremendous credit for making their case on behalf of community members. Special acknowledgements go to Sue Cowell, the HNC Executive Director and Leonard Poe, the chapter’s advocacy chair for pulling together a thoughtful and far-reaching program.