Skip to main content

A Jingle for GINA

An update on the Genetic non-discrimination Act...

As regular readers know, the GINA bill, the Genetic Non-Discrimination Act, is a piece of legislation the Hermansky-Pudlak Syndrome Network has supported as part of a coalition formed by the Genetic Alliance. This bill has been trying to get through Congress for more than a decade. It would prohibit discrimination based on one’s genetic pre-disposition to develop a given medical problem. This year we came very, very close – but one Senator from Oklahoma gummed up the works for the entire thing and it got buried.

Fast forward to the budget debate. The White House and Congress are battling over the budget. You might remember my being upset with the White House for wanting to cut the NIH budget. Well, Congress is fighting back by creating a mega bill – an omnibus bill including all sorts of things to essentially try to make it impossible to oppose passing the bill. And, unfortunately, that means the pork rush is on too.

But, one positive to this development is that some in Congress believe this is a way to get around the Senator from Oklahoma and get GINA passed. So, below is an alert that came out today from the Genetic Alliance. If you feel inclined, give Congress a jingle for GINA!

For those of you that have been following this - this action alert just came in from the Genetic Alliance. It's the typical Washington game - they're fighting over the budget, so to make it impossible to veto, they're tying everything together - and now they want to add GINA into the mix, which for the GINA bill, could be a good thing.
At any rate - here it is:


Now is the time to act for GINA!!!
Tell House Appropriations and Leadership that you want GINA included in the omnibus!Congress wants to move GINA by attaching it to the omnibus appropriations legislation this year. This would get GINA passed in just a few days. After so many years of struggling to pass the legislation, this is the opportunity! Please CALL the members of the House Appropriations Committee and House Leadership ASAP and let them know that the Genetic Information Nondiscrimination Act must be included in the omnibus. Tell you friends and family to make the calls. Finally, please email policy@geneticalliance.org or call 202.966.5557 x207 to let the Coalition for Genetic Fairness know that you have taken action!

Sample Script
My name is ____ and I am calling to ask (NAME OF ELECTED OFFICIAL) to support the inclusion of the Genetic Information Nondiscrimination Act in the omnibus appropriations legislation. This bill passed the House 420-3 on April 25, 2007 and the Senate hot lined version provides the strong protections our community values. The Genetic Information Nondiscrimination Act protects all Americans from the misuse of genetic information in employment and health insurance decisions. With these protections in place, Americans will be able to use genetics in medicine without fear of misuse of their genetic information. I strongly urge (NAME OF ELECTED OFFICIAL) to support the Act's inclusion in the omnibus. Thank you.

House LeadershipSpeaker of the House Nancy Pelosi 202.225.496
5Majority Leader Steny Hoyer 202.225.313
0Majority Whip James Clyburn 202.226.3210
Republican Leader John Boehner 202.225.4000
Minority Whip Roy Blunt 202.225.0197

House Appropriations Committee
Robert Aderholt 202.225.4876
Rodney Alexander 202.225.8490
Marion Berry 202.225.4076
Sanford Bishop 202.225.3631
Allen Boyd 202.225.5235
Ken Calvert 202.225.1986
John Carter 202.225.3864
Ben Chandler 202.225.4706
Robert Cramer 202.225.4801
Ander Crenshaw 202.225.2501
John Culberson 202.225.2571
Rosa DeLauro 202.225.3661
Norman Dicks 202.225.5916
Chet Edwards 202.225.6105
Jo Ann Emerson 202.225.4404
Sam Farr 202.225.2861
Chaka Fattah 202.225.4001
Rodney Frelinghuysen 202.225.5034
Virgil Goode 202.225.4711
Kay Granger 202.225.5071
Maurice Hinchey 202.225.6335
David Hobson 202.225.4324
Mike Honda 202.225.2631
Steve Israel 202.225.3335
Jesse Jackson 202.225.0773
Marcy Kaptur 202.225.4146
Patrick Kennedy 202.225.4911
Carolyn Kilpatrick 202.225.2261
Jack Kingston 202.225.5831
Mark Kirk 202.225.4835
Joe Knollenberg 202.225.5802
Ray LaHood 202.225.6201
Tom Latham 202.225.5476
Barbara Lee 202.225.2661
Jerry Lewis 202.225.4876
Nita Lowey 202.225.6506
Betty McCollum 202.225.6631
Alan Mollohan 202.225.4172
James Moran 202.225.4376
John Murtha 202.225.2065
David Obey 202.225.3365
John Olver 202.225.5335
Ed Pastor 202.225.4065
John Peterson 202.225.5121
David Price 202.225.1784
Ralph Regula 202.225.3876
Dennis Rehberg 202.225.3211
Ciro Rodriguez 202.225.4511
Harold Rogers 202.225.4601
Steven Rothman 202.225.5061
Lucille Roybal-Allard 202.225.1766
C. A. Dutch Ruppersberger 202.225.3061
Tim Ryan 202.225.5261
Adam Schiff 202.225.4176
Jose Serrano 202.225.4361
Mike Simpson 202.225.5531
Todd Tiahrt 202.225.6216
Tom Udall 202.225.6190
Peter Visclosky 202.225.2461
James Walsh 202.225.3701
Zach Wamp 202.225.3271

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria