A bill to make it easier for Huntington’s disease patients to obtain disability status and federal benefits was introduced in the U.S. Senate for the first time by Senator Kirsten Gillibrand (D-NY) on March 17.

The Huntington’s Disease Parity Act of 2011 – first introduced into the Congress in 2009 by San Diego Congressmen Brian Bilbray (R) and Bob Filner (D) – now needs Senate co-sponsors so that the bill can be considered in that body and ultimately brought up for a vote. 

Bilbray and Filner reintroduced the bill in the current session of the house as H.R. 718.

The Senate bill number for the act is S. 648.

If passed, this important legislation will require the Social Security Administration (SSA) to update its grossly outdated disability listing for HD and also provide a waiver for the two-year Medicare waiting period for people disabled by HD.

In 2010 the version of the bill in the House gained 152 supporters. However, it cannot become law until also receiving approval in the Senate.

Senator Gillibrand has circulated a letter among her colleagues seeking co-sponsors. You can read the letter by clicking on this link: Senator Gillibrand Letter.

“Congress has already waived the two year waiting period for people disabled by Lou Gehrig's disease (ALS),” Gillibrand wrote. “People disabled byHD also deserve immediate action. We can no longer accept [this] impasse, waiting for a solution for all diseases. We must act now to help our most vulnerable.”

HDSA advocates are requesting all members of the HD community to contact their senators and representatives to urge co-sponsorship and passage of the bill.

Senators can be contacted quickly and easily by clicking here.

California HD advocates have already contacted Senator Barbara Boxer (D) for possible co-sponsorship. Senator Boxer needs to hear from more constituents to assure that she will seriously consider backing the bill.

Californians can show their support for the bill by posting on Boxer’s Facebook page, sending her an e-mail, phoning her office, or writing a letter.

Here’s how to contact Senator Boxer:

E-mail her by clicking here.

Visit her Facebook page by clicking here.

Write or call at these contacts: 

Office of U.S. Senator Barbara Boxer
600 B Street, Suite 2240
San Diego, CA 92101
(619) 239-3884

Office of U.S. Senator Barbara Boxer
1700 Montgomery St., Suite 240
San Francisco, CA 94111
(415) 403-0100

Office of U.S. Senator Barbara Boxer
112 Hart Senate Office Building
Washington, D.C. 20510
(202) 224-3553

Californians should also contact Senator Dianne Feinstein at the following addresses and numbers:

Office of U.S. Senator Dianne Feinstein
United States Senate
331 Hart Senate Office Building
Washington, D.C. 20510
(202) 224-3841
Fax: (202) 228-3954
TTY/TDD: (202) 224-2501

Click here to see Senator Feinstein's in-state addresses.

For a sample letter, please click here.

California letter writers should remind the senators that this state has the largest number of HDSA Chapters and Centers of Excellence, which provide both treatment and support to those afflicted with HD. Also, the bill will not add to the federal deficit.

Please forward this article to everyone you know who cares about HD, because we want to generate as many emails as possible. If you have any questions about the Huntington's Disease Parity Act, or about HDSA Advocacy, please contact Misty Oto or Jane Kogan.

For previous coverage of the bill and background information, please visit our Advocacy page.