By Misty Oto
HDSA-San Diego Advocacy Chair
At the behest of HDSA-San Diego’s advocacy team, in early 2009 Representatives Bob Filner (D-CA) and Brian Bilbray (R-CA) introduced H.R. 678, The Huntington's Disease Parity Act of 2009. If passed, this important legislation will require the Social Security Administration to update its outdated disability listing for HD and also provide a waiver for the two-year Medicare waiting period for people disabled by HD.
The bill is co-sponsored by two other San Diego representatives, Susan Davis (D) and Darrell Issa (R). Representative Duncan Hunter (R), also of San Diego, is studying the bill for possible co-sponsorship.
Delays and unnecessary reapplications for Social Security Disability Insurance (SSDI) are far too common. Many in the HD community struggle to obtain benefits. After they begin receiving benefits, people with HD often face a gap in health coverage due to the Medicare eligibility waiting period, at a time when their medical needs are only increasing.
This issue affects everyone in the HD community, but we've gained a lot of ground this year in bringing about this much-needed bill. With every co-sponsor we come one step closer to our goal.
“Americans suffering from Huntington's disease often face a double battle: the fight against their illness and the fight to obtain necessary benefits from Medicare and the Social Security Administration,” stated Representative Filner. “I believe that this legislation will create a system that responds to beneficiary needs. I am grateful to HDSA for bringing these issues to my attention, and I am proud to join your fight for effective treatment and benefits!"
“Thousands of people across the nation suffer from Huntington's Disease, which hinders their ability to walk, talk and reason,” stated Representative Bilbray. “I cosponsored this legislation because it will undoubtedly assist these families in accessing treatments and improve their quality of life.”
Call or write your representative today and ask for co-sponsorship of HR 678. To locate a representative, click here.
For additional information on HDSA’s advocacy of HR 678, see the links below.
Click here to view KGTV-10 (San Diego) coverage of HR 678 (May 21, 2009).
Click here to watch C-SPAN coverage of Representatives Bilbray and Filner speaking about HR 678 (May 21, 2009).
Click here for the text of HR 678.
Click here for background on the need for HR 678.
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