HD social security bill gains supporters
Sunday, August 9, 2009
Allan Rappoport (left), Becky Grossklaus and Congressman Ron Kind

Twenty-six U.S. congressional representatives of both political parties have already co-sponsored H.R. 678, The Huntington’s Disease Parity Act of 2009, and HDSA activists around the country are working to increase that number in order for the bill to come up for a vote before the full House of Representatives.

Introduced at the start of 2009 by two San Diego-area representatives, Bob Filner (D) and Brian Bilbray (R), the bill would require the Social Security Administration to update its outdated disability listing for Huntington’s disease and also provide a waiver for the two-year Medicare waiting period for people disabled by HD.

For background on the bill, please click here.

Greater San Diego’s three other representatives have also agreed to co-sponsor the legislation: Susan Davis (D), Darrell Issa (R), and Duncan Hunter (R).

The most recent addition to the list is Congressman Ron Kind (D-Wisc.), who is a member of the majority on the House Ways and Means Committee. Mr. Kind also serves on the Ways and Means Health Sub-Committee. His co-sponsorship came thanks to the work of HDSA-San Diego advocate Allan Rappoport and Becky Grossklaus of Eau Claire. (Click here for related article.)

Several co-sponsorships resulted from the work of a group of mothers, husbands, brothers, caregivers, at-risk individuals, and gene-positive people from Virginia who visited Capitol Hill in March to share their personal stories about Huntington’s disease with their representatives. Led by Dr. Tim O’Neil, the group visited ten different offices in one day.
Ted Krull (left), Carla Krull, Emily Krull and Congressman Dana Rohrabacher

In addition to Dr. O’Neil, the advocates included Marge Rogan, Dave Kendall, Karen O’Neil, Ruth Hargrave, Joe Siedlarz, Patty Hillman, James Kerns, Nancy Swain, Bryan Hillman, Marie Clay, Brian Wishneff, and Margaret Storey.

In California HDSA-San Diego advocate Rappoport, Advocacy Chair Misty Oto, committee member Sally Cravens, advocate James Saint Onge, and numerous other individuals have worked to gain support for H.R. 678. In April, Dean Spanos, the president of the San Diego Chargers, wrote a letter recommending the bill to representatives across the state.

Congressman Dana Rohrabacher (R), of the 46th district in southern California, also expressed strong interest in backing the legislation after a visit by Oto and the Krull family on August 5. Ted and Carla Krull live in Rohrabacher’s district, and their daughter Emily has juvenile HD.

Advocates have begun contacting senators in order to obtain the introduction of a companion bill in the U.S. Senate.

Click here to read how you too can become an advocate for this very crucial bill for the HD community.

To assist in this crucial campaign, please contact your congressional representative.

Further information on the bill and advocacy efforts is available from advocate Oto by clicking here, from Joseph LaMountain by calling (202) 288-5124 or clicking here, or from HDSA advocacy director Sean Luis at (800) 345-4372, ext. 226, or by clicking here.