On March 1-3, 2006, 200 members of the bleeding and clotting disorders community convened in Washington, DC to participate in the National Hemophilia Foundation’s (NHF) Annual Washington Days conference and legislative action day. Attendees met with their elected representatives and their staffs in over 170 Congressional offices to discuss and advocate for issues of importance to the community.
This year’s Capitol Hill focus was on three key issues: the need for increased funding at hemophilia treatment centers (HTCs), acquiring representatives’ support for passage of the Genetic Information Nondiscrimination Act and expanding access to Medigap supplemental insurance policies for all Medicare beneficiaries. Additional information on these issues is available on the NHF Web site at (LINK).
As a result of all of the participants’ efforts on the Hill, we were able to gain many new sponsors for the Genetic Information Nondiscrimination Act. We also gained ground on access to Medigap, and NHF is continuing to work with other bleeding disorders organizations and representatives of industry to advance this issue. Finally, despite the current budget crunch, we are encouraged about the possibility of achieving our request for an additional $3 million in funding for the HTCs in the Labor, Health and Human Services, and Education Appropriations bill.
Our Thursday morning briefing also featured the presentation of the Dr. L. Michael Kuhn Award to two distinguished congressman, Patrick Kennedy (D-RI) and Tom Price (R-GA), for their leadership and dedicated efforts on behalf of community needs. In accepting their awards, both legislators gave words of appreciation and encouragement for what the community was doing to support better healthcare for Americans.
On Friday, our half-day workshop featured information on how to advocate at the state level. The workshop was led by Glenn Mones, NHF’s Vice President for Public Policy, and included panelists Ann Rogers, Executive Director of the Delaware Valley Chapter of NHF, Rachel Klein, Senior Health Policy Analyst and Medicaid Specialist at Families USA, and Jon Hendl, Vice President of the MWW Group. Participants had an opportunity to discuss critical issues facing the bleeding disorders community, and learn specific strategies for addressing these issues.
NHF Washington Days are an important part of a year-long effort to ensure that people with bleeding and clotting disorders have ongoing access to safe, effective, high quality medical care. The direct involvement of community members from across the country is critical to the success of these efforts.
NHF will continue to update the community on these issues and ways to get involved through our publications and web site, www.hemophilia.org. Please check our web site regularly for updates and new advocacy tools.
For more information about any aspect of NHF’s Public Policy program, please contact Glenn Mones at firstname.lastname@example.org. For information about following up on our Washington Days issues with specific legislators, please contact Andy Wurtzel of MARC Associates, NHF’s Washington representatives, at 202-833-0007 or email him at Andrew@marcassoc.com.