GINA

We Did It! GINA Passes U.S. Senate, Will Become Law

The Genetic Information Non-Discrimination Act (H.R. 493; GINA) passed the U.S. Senate today by an overwhelming vote of 95-0, clearing the way for the bill to go to President Bush for signing into law.

After a battle that lasted more than 12 years in Congress, GINA sailed through after intense negotiations with Senator Coburn (R-OK) over the past two weeks produced a compromise. Coburn had blocked the bill from being passed since early last year.

The PKD Foundation wants to express its deep gratitude to our advocates for their persistent lobbying in support of this legislation, especially over the last two-and-a-half years when we were so close to passing this legislation several times, but fell just short of doing so.

You have proved that the power of grassroots advocacy can make a difference. Since 2006, more than 200 people have traveled to Washington, D.C., to lobby more than 300 Congressional offices on behalf of GINA. Your quick responses to our Action Alerts have generated hundreds upon hundreds of phone calls, letters and faxes to Congressional offices.

It was well worth the effort. Now, PKD patients do not have to fear testing early for their disease or volunteering for vital clinical trials. As Senator Edward Kennedy (D-MA) said today during the vote, “GINA is the first major civil rights legislation of this century.”

The not-for-profit PKD Foundation leads the fight against PKD through research funding, patient education and advocacy. For more information, visit http://www.pkdcure.org/Home/tabid/36/Default.aspx or call 1-800-PKD-CURE.