Legislative Advocacy: Second Annual HHT Capitol Hill Day

March 2007:

Second Annual HHT Capitol Hill Day

Capitol Hill Day was held March 7th – 8th. With the combined efforts of our HHT members, Board of Directors, Center of Excellence Directors, and our Foundation office staff, the goal of 60 Congressional Office visits was achieved. We had HHT members who returned for their 2nd Capitol Hill Day and many new HHT members joined us for the first time. We were thrilled with the quantity of appointments, but more importantly, the productivity of the meetings was greatly improved. At the conclusion, we left Washington, DC with the knowledge that 60 more members of Congress were educated on HHT and that 12 Senate offices and 13 House offices made statements of varying levels of support for our Legislative Initiative!


Senate House

Ted Kennedy of MA Rosa DeLauro of CT

Christopher Dodd of CT Jim Gerlach of PA

Tom Harkin of IO Patrick Murphy of PA

Arlen Specter of PA Mark Kirk of IL

Robert Bennett of UT Dave Reichert of WA

Orrin Hatch of UT Jerry Lewis of CA

Frank Lautenberg of NJ Lois Capps of CA

Robert Menendez of NJ Stephanie Herseth of SD

Lindsey Graham of SC Jim Matheson of UT

Mary Landrieu of LA Rodney Alexander of LA

Johnny Isakson of GA Chris Cannon of UT

Tim Johnson of SD Ralph Regula of OH

Bart Gordan of TN

Legislative Advocacy: January and February 2007 update

(Congressional Fiscal year 2008 runs from October 1, 2007 through September 30, 2008)

What’s Been Accomplished Thus Far

By Sharon Williams, Legislative Advocacy and Regional Networking Alliance Manager

January and February 2007: FY 2008 HHT Legislative Language and Funding Request was established by HHT Foundation.

The HHT Foundation is asking for an $8 million appropriation designation for HHT through the Center for Disease Control (CDC) for FY2008. This federal funding would be utilized by 8 HHT Treatment Centers of Excellence to provide surveillance; create a multi-center clinical database to collect and analyze data; support epidemiological studies; provide and manage patient interventions; train health care professionals to prevent death and disability, improve outcome, reduce costs and increase the quality of life for people living with HHT. Additionally, a National Resource Center would be established to increase HHT education, outreach, and support. With the help of this funding and through aggressive management of the HHT at risk population, it is estimated that over $6.6 billion in preventable health care costs can be saved.