Hemophilia of North Carolina

Since 1977, serving the people of North Carolina
affected by bleeding disorders.

260 Town Hall Dr., Suite A, Morrisville, NC 27560
1-800-990-5557 (toll free)

What this event is all about...

NHF Washington Days

February 24-25, 2010
Washington, DC

North Carolina Delegation on the Hill

Our state was well represented at this year's NHF Washington Days held February 24-25, 2010.  Seventeen representatives from North Carolina attended this year and were successful in meeting with many of our NC legislators including Senator Kay Hagan, Congressman Brad Miller, Congressman Larry Kissell, Congressman Heath Shuler and the legislative assistants for many others on our day "on the hill." NHF has reported congressional activity on our issues, and that is thanks to the advocacy efforts on Washington Days.

Efforts on the health reform front were directed at advocating for key private insurance market reforms to be included in the final reform legislation, which will benefit individuals with bleeding disorders and other high-cost, chronic and rare conditions.  Participants requested that the final health reform legislation have the strongest possible patient protections and ensure access to health insurance plans for individuals with high medical costs.  We respectfully requested that the final health reform legislation be applicable to all insurance plans--existing and new plans--and that it include the immediate elimination of lifetime and annual caps, and other key reforms such as the elimination of pre-existing conditions exclusions.

We also asked for continued support with funding for the hemophilia program at CDC in the FY 2011 Labor, HHS Appropriations Bill. The hemophilia program at CDC is eliminated in President Obama's FY 2011 budget, and it remains unclear what CDC intends to do with funding it could receive for a new blood disorders program. CDC's funding for Hemophilia Treatment Centers (HTCs), which supports critical prevention, disease management and blood safety surveillance activities, must be maintained. In addition to these national talking points, we had an opportunity to discuss our state high risk pool, Inclusive Health, and some of the limitations in place that do not work for the hemophilia community, in particular the lifetime cap and the $100,000 annual cap on specialty drugs. Both the House and Senate versions of health care reform have provided for temporary high-risk insurance pools to cover the uninsurable until the Health Insurance Exchange gives us an insurance option. To participate in funding, the North Carolina pool would have to comply with the national criteria that presently have no lifetime caps or annual prescription limits. We asked our legislators to support a national high-risk pool in any health care reform bill and make Inclusive Health work for North Carolina.

In the House, Representative Tammy Baldwin is spearheading a letter to the Appropriations Committee on the funding for the hemophilia program and we are very pleased to announce that Congressman Brad Miller has agreed to co-sign the letter.

Our thanks to Leonard Poe, Vice President and Advocacy Chair of HNC, for coordinating a well represented contingent from the state, preparing information on the program and scheduling the group for our many meetings.

It is now time to move on to NC Legislative Day on June 8th and initiatives for our state. As a follow up to a productive trip to Washington, HNC will be setting up meetings between constituents and their representatives around NC. If you are interested in being a part of the growing group of active participants in the advocacy arena, please contact Leonard Poe at leonard.poe@hemophilia-nc.org or by phone at (828) 713-6246. You can help to make a difference!

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