Continuing their efforts to obtain a floor vote on a bill that would make it easier for Huntington’s disease patients to obtain Social Security and Medicare benefits, HDSA advocates are working this month to obtain the 100th signature on H.R. 678 and encourage the introduction of a companion bill in the U.S. Senate.
As of March 6, 96 members of the U.S. House of Representatives had co-signed the bill, The Huntington’s Disease Parity Act of 2009. The bill would revise the Social Security Administration’s outdated criteria for granting disability status and remove the two-year waiting period to receive Medicare benefits.
HDSA has established March 18, Advocacy Day, as the target date for the 100th signature. On that day more than 100 advocates will visit members of both the House and the Senate in Washington, D.C., in order to build support for the legislation.
In conjunction with Advocacy Day, HDSA is organizing a national call-in effort. HDSA will provide advocates with congressional phone numbers and talking points for advocates to make the case about H.R. 678.
Advocates are now working to convince senators to introduce a companion bill in their chamber. The bill must pass both houses of Congress in order for it to become law.
By calling representatives and senators, members of the HD community can educate leaders about HD and the need for the new legislation. It’s also an opportunity for HD-affected families to share their personal stories and raise greater awareness about the need to find treatments and a cure for HD.
Members of the HD community can also write their representatives and senators.
Click here to see the list of co-sponsors and further details on the bill. Click here to invite your family and friends to join our effort by forwarding a message to them.
Since HDSA needs support from both houses of Congress, you can also send an email asking your two Senators to introduce the Huntington’s Disease Parity Act in the Senate.
For HDSA advocacy updates, please click here.
For more information, contact HDSA-San Diego advocacy chair Misty Oto by clicking here, HDSA’s national manager for advocacy and program services, Jane Kogan, by calling 212-242-1968 or clicking here, or HDSA Washington representative Joseph LaMountain by calling 202-288-5124 or clicking here.
For previous coverage of the bill, visit our Advocacy pages by clicking here.
Click here for the text of H.R. 678.
Click here for background on the need for H.R. 678.
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