As regular blog readers know, the HPS Network has supported the passage of GINA for years. Allowing people to seek genetic testing, free from worries about future possible discrimination, is critical. For many disorders, without genetic testing people can’t get an accurate diagnosis, and thus accurate treatment. For others, genetic testing is critical to being able to participate in clinical research.
As I outlined in an earlier post, the test for the HPS type of albinism isn’t a genetic test. It’s a blood test. However, for patients to participate in certain clinical trials it becomes necessary to type test. For many, even these tests don’t yield any answers. We haven’t yet identified all of the HPS genes so there are undoubtedly several types of HPS not yet documented in the literature. But, for others like me, genetic testing did yield some answers and has allowed me to participate in the drug trial.
But, if Americans are afraid that the results of genetic tests will be used against them, they may delay testing, or never seek it at all. Fear of genetic testing can only slow down research for many, many disorders. The result affects us all.
Help GINA progress through the Senate. Tell the Senate to take action on GINA!
The Genetic Information Nondiscrimination Act, or GINA, (S.358) is on the verge of passing, after 12 long years! The House bill (H.R.493) passed 420-3 on April 25 and the Senate bill has been reported out of committee. We just need the full Senate to vote on the bill to get it to the President’s desk!
Tell your senators to push for GINA to come to the floor for a vote! A list of senators and their contact information is below. Please take a few minutes to tailor the sample letter below on your letterhead and fax it to the Senate. Feel free to insert personal reasons for your support of the bill into the text.
There is power in numbers! Tell your friends, family, coworkers, and other members of your organization to take action now. We must make a big impact on this issue, and if every senator is contacted multiple times, we can make it happen!
Sample Letter
Dear Senator ____,
I support the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am writing to ask for your support for this legislation to come to the floor and pass.
It is astounding that this bill, which the Senate has passed unanimously in the 108th and 109th Congresses, has not passed in the 110th yet. The House passed it 420-3 on April 25, 2007. This bill 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.
More than 140 national patient groups, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. We represent every sector of society in this nation, and we urge passage of GINA.
Thank you for your time.
Best,___
Note to my visually impaired readers. I'm sorry I'm not enlarging the Congressional contacts. When I enlarge them, they space out all weird so they'd have to be retyped, and I don't have time to retype them right now. I hope you all can make do okay.
List of Senators
Senator
Phone
Fax
Daniel Akaka (D-HI)
202.224.6361
202.224.2126
Lamar Alexander (R-TN)
202.224.4944
202.228.3398
Wayne Allard (R-CO)
202.224.5941
202.224.6471
Max Baucus (D-MT)
202.224.2651
202.224.0515
Evan Bayh (D-IN)
202.224.5623
202.228.1377
Robert Bennett (R-UT)
202.224.5444
202.228.1168
Joseph Biden (D-DE)
202.224.5042
202.224.0139
Jeff Bingaman (D-NM)
202.224.5521
202.224.2852
Christopher Bond (R-MO)
202.224.5721
202.224.8149
Barbara Boxer (D-CA)
202.224.3553
202.956.6701
Sherrod Brown (D-OH)
202.224.2315
202.228.6321
Sam Brownback (R-KS)
202.224.6521
202.228.1265
Jim Bunning (R-KY)
202.224.4343
202.228.1373
Richard Burr (R-NC)
202.224.3154
202.228.2981
Robert Byrd (D-WV)
202.224.3954
202.228.0002
Maria Cantwell (D-WA)
202.224.3441
202.228.0514
Benjamin Cardin (D-MD)
202.224.4524
202.224.1651
Thomas Carper (D-DE)
202.224.2441
202.228.2190
Robert Casey (D-PA)
202.224.6324
202.228.0604
Saxby Chambliss (R-GA)
202.224.3521
202.224.0103
Hillary Rodham Clinton (D-NY)
202.224.4451
202.228.0282
Tom Coburn (R-OK)
202.224.5754
202.224.6008
Thad Cochran (R-MS)
202.224.5054
202.224.9450
Norm Coleman (R-MN)
202.224.5641
202.224.1152
Susan Collins (R-ME)
202.224.2523
202.224.2693
Kent Conrad (D-ND)
202.224.2043
202.224.7776
Bob Corker (R-TN)
202.224.3344
202.228.0566
John Cornyn (R-TX)
202.224.2934
202.228.2856
Larry Craig (R-ID)
202.224.2752
202.228.1067
Mike Crapo (R-ID)
202.224.6142
202.228.1375
Jim DeMint (R-SC)
202.224.6121
202.228.5143
Christopher Dodd (D-CT)
202.224.2823
202.224.1083
Elizabeth Dole (R-NC)
202.224.6342
202.224.1100
Pete Domenici (R-NM)
202.224.6621
202.228.3261
Byron Dorgan (D-ND)
202.224.2551
202.224.1193
Richard Durbin (D-IL)
202.224.2152
202.228.0400
John Ensign (R-NV)
202.224.6244
202.228.2193
Michael Enzi (R-WY)
202.224.3424
202.228.0359
Russ Feingold (D-WI)
202.224.5323
202.224.2725
Dianne Feinstein (D-CA)
202.224.3841
202.228.3954
Lindsey Graham (R-SC)
202.224.5972
202.224.3808
Charles Grassley (R-IA)
202.224.3744
202.224.6020
Judd Gregg (R-NH)
202.224.3324
202.224.4952
Chuck Hagel (R-NE)
202.224.4224
202.224.5213
Tom Harkin (D-IA)
202.224.3254
202.224.9369
Orrin Hatch (R-UT)
202.224.5251
202.224.6331
Kay Bailey Hutchison (R-TX)
202.224.5922
202.224.0776
James Inhofe (R-OK)
202.224.4721
202.228.0380
Daniel Inouye (D-HI)
202.224.3934
202.224.6747
Johnny Isakson (R-GA)
202.224.3643
202.228.0724
Tim Johnson (D-SD)
202.224.5842
202.228.5765
Edward Kennedy (D-MA)
202.224.4543
202.224.2417
John Kerry (D-MA)
202.224.2742
202.224.8525
Amy Klobuchar (D-MN)
202.224.3244
202.228.2186
Herbert Kohl (D-WI)
202.224.5653
202.224.9787
Jon Kyl (R-AZ)
202.224.4521
202.224.2207
Mary Landrieu (D-LA)
202.224.5824
202.224.9735
Frank Lautenberg (D-NJ)
202.224.3224
202.228.4054
Patrick Leahy (D-VT)
202.224.4242
202.224.3479
Carl Levin (D-MI)
202.224.6221
202.224.1388
Joseph Lieberman (D-CT)
202.224.4041
202.224.9750
Blanche Lincoln (D-AR)
202.224.4843
202.228.1371
Trent Lott (R-MS)
202.224.6253
202.224.2262
Richard Lugar (R-IN)
202.224.4814
202.228.0360
Mel Martinez (R-FL)
202.224.3041
202.228.5171
John McCain (R-AZ)
202.224.2235
202.228.2862
Claire McCaskill (D-MO)
202.224.6154
202.228.6326
Mitch McConnell (R-KY)
202.224.2541
202.224.2499
Robert Menendez (D-NJ)
202.224.4744
202.228.2197
Barbara Mikulski (D-MD)
202.224.4654
202.224.8858
Lisa Murkowski (R-AK)
202.224.6665
202.224.5301
Patty Murray (D-WA)
202.224.2621
202.224.0238
Ben Nelson (D-NE)
202.224.6551
202.228.0012
Bill Nelson (D-FL)
202.224.5274
202.228.2183
Barack Obama (D-IL)
202.224.2854
202.228.5417
Mark Pryor (D-AR)
202.224.2353
202.228.0908
Jack Reed (D-RI)
202.224.4642
202.224.4680
Harry Reid (D-NV)
202.224.3542
202.224.7327
Pat Roberts (R-KS)
202.224.4774
202.224.3514
John Rockefeller (D-WV)
202.224.6472
202.224.7665
Ken Salazar (D-CO)
202.224.5852
202.228.5036
Bernard Sanders (I-VT)
202.224.5141
202.228.0776
Charles Schumer (D-NY)
202.224.6542
202.228.3027
Jeff Sessions (R-AL)
202.224.4124
202.224.3149
Richard Shelby (R-AL)
202.224.5744
202.224.3416
Gordon Smith (R-OR)
202.224.3753
202.228.3997
Olympia Snowe (R-ME)
202.224.5344
202.224.1946
Arlen Specter (R-PA)
202.224.4254
202.228.1229
Debbie Stabenow (D-MI)
202.224.4822
202.228.0325
Ted Stevens (R-AK)
202.224.3004
202.224.2354
John Sununu (R-NH)
202.224.2841
202.228.4131
Jon Tester (D-MT)
202.224.2644
202.224.8594
Craig Thomas (R-WY)
202.224.6441
202.224.1724
John Thune (R-SD)
202.224.2321
202.228.5429
David Vitter (R-LA)
202.224.4623
202.228.5061
George Voinovich (R-OH)
202.224.3353
202.228.1382
John Warner (R-VA)
202.224.2023
202.224.6295
Jim Webb (D-VA)
202.224.4024
202.228.6363
Sheldon Whitehouse (D-RI)
202.224.2921
202.228.6362
Ron Wyden (D-OR)
202.224.5244
202.228.2717
As I outlined in an earlier post, the test for the HPS type of albinism isn’t a genetic test. It’s a blood test. However, for patients to participate in certain clinical trials it becomes necessary to type test. For many, even these tests don’t yield any answers. We haven’t yet identified all of the HPS genes so there are undoubtedly several types of HPS not yet documented in the literature. But, for others like me, genetic testing did yield some answers and has allowed me to participate in the drug trial.
But, if Americans are afraid that the results of genetic tests will be used against them, they may delay testing, or never seek it at all. Fear of genetic testing can only slow down research for many, many disorders. The result affects us all.
Help GINA progress through the Senate. Tell the Senate to take action on GINA!
The Genetic Information Nondiscrimination Act, or GINA, (S.358) is on the verge of passing, after 12 long years! The House bill (H.R.493) passed 420-3 on April 25 and the Senate bill has been reported out of committee. We just need the full Senate to vote on the bill to get it to the President’s desk!
Tell your senators to push for GINA to come to the floor for a vote! A list of senators and their contact information is below. Please take a few minutes to tailor the sample letter below on your letterhead and fax it to the Senate. Feel free to insert personal reasons for your support of the bill into the text.
There is power in numbers! Tell your friends, family, coworkers, and other members of your organization to take action now. We must make a big impact on this issue, and if every senator is contacted multiple times, we can make it happen!
Sample Letter
Dear Senator ____,
I support the Genetic Information Nondiscrimination Act, or GINA, (S.358). I am writing to ask for your support for this legislation to come to the floor and pass.
It is astounding that this bill, which the Senate has passed unanimously in the 108th and 109th Congresses, has not passed in the 110th yet. The House passed it 420-3 on April 25, 2007. This bill 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.
More than 140 national patient groups, academic institutions, research centers, companies, women’s organizations, labor organizations, and the millions of Americans endorse this legislation. We represent every sector of society in this nation, and we urge passage of GINA.
Thank you for your time.
Best,___
Note to my visually impaired readers. I'm sorry I'm not enlarging the Congressional contacts. When I enlarge them, they space out all weird so they'd have to be retyped, and I don't have time to retype them right now. I hope you all can make do okay.
List of Senators
Senator
Phone
Fax
Daniel Akaka (D-HI)
202.224.6361
202.224.2126
Lamar Alexander (R-TN)
202.224.4944
202.228.3398
Wayne Allard (R-CO)
202.224.5941
202.224.6471
Max Baucus (D-MT)
202.224.2651
202.224.0515
Evan Bayh (D-IN)
202.224.5623
202.228.1377
Robert Bennett (R-UT)
202.224.5444
202.228.1168
Joseph Biden (D-DE)
202.224.5042
202.224.0139
Jeff Bingaman (D-NM)
202.224.5521
202.224.2852
Christopher Bond (R-MO)
202.224.5721
202.224.8149
Barbara Boxer (D-CA)
202.224.3553
202.956.6701
Sherrod Brown (D-OH)
202.224.2315
202.228.6321
Sam Brownback (R-KS)
202.224.6521
202.228.1265
Jim Bunning (R-KY)
202.224.4343
202.228.1373
Richard Burr (R-NC)
202.224.3154
202.228.2981
Robert Byrd (D-WV)
202.224.3954
202.228.0002
Maria Cantwell (D-WA)
202.224.3441
202.228.0514
Benjamin Cardin (D-MD)
202.224.4524
202.224.1651
Thomas Carper (D-DE)
202.224.2441
202.228.2190
Robert Casey (D-PA)
202.224.6324
202.228.0604
Saxby Chambliss (R-GA)
202.224.3521
202.224.0103
Hillary Rodham Clinton (D-NY)
202.224.4451
202.228.0282
Tom Coburn (R-OK)
202.224.5754
202.224.6008
Thad Cochran (R-MS)
202.224.5054
202.224.9450
Norm Coleman (R-MN)
202.224.5641
202.224.1152
Susan Collins (R-ME)
202.224.2523
202.224.2693
Kent Conrad (D-ND)
202.224.2043
202.224.7776
Bob Corker (R-TN)
202.224.3344
202.228.0566
John Cornyn (R-TX)
202.224.2934
202.228.2856
Larry Craig (R-ID)
202.224.2752
202.228.1067
Mike Crapo (R-ID)
202.224.6142
202.228.1375
Jim DeMint (R-SC)
202.224.6121
202.228.5143
Christopher Dodd (D-CT)
202.224.2823
202.224.1083
Elizabeth Dole (R-NC)
202.224.6342
202.224.1100
Pete Domenici (R-NM)
202.224.6621
202.228.3261
Byron Dorgan (D-ND)
202.224.2551
202.224.1193
Richard Durbin (D-IL)
202.224.2152
202.228.0400
John Ensign (R-NV)
202.224.6244
202.228.2193
Michael Enzi (R-WY)
202.224.3424
202.228.0359
Russ Feingold (D-WI)
202.224.5323
202.224.2725
Dianne Feinstein (D-CA)
202.224.3841
202.228.3954
Lindsey Graham (R-SC)
202.224.5972
202.224.3808
Charles Grassley (R-IA)
202.224.3744
202.224.6020
Judd Gregg (R-NH)
202.224.3324
202.224.4952
Chuck Hagel (R-NE)
202.224.4224
202.224.5213
Tom Harkin (D-IA)
202.224.3254
202.224.9369
Orrin Hatch (R-UT)
202.224.5251
202.224.6331
Kay Bailey Hutchison (R-TX)
202.224.5922
202.224.0776
James Inhofe (R-OK)
202.224.4721
202.228.0380
Daniel Inouye (D-HI)
202.224.3934
202.224.6747
Johnny Isakson (R-GA)
202.224.3643
202.228.0724
Tim Johnson (D-SD)
202.224.5842
202.228.5765
Edward Kennedy (D-MA)
202.224.4543
202.224.2417
John Kerry (D-MA)
202.224.2742
202.224.8525
Amy Klobuchar (D-MN)
202.224.3244
202.228.2186
Herbert Kohl (D-WI)
202.224.5653
202.224.9787
Jon Kyl (R-AZ)
202.224.4521
202.224.2207
Mary Landrieu (D-LA)
202.224.5824
202.224.9735
Frank Lautenberg (D-NJ)
202.224.3224
202.228.4054
Patrick Leahy (D-VT)
202.224.4242
202.224.3479
Carl Levin (D-MI)
202.224.6221
202.224.1388
Joseph Lieberman (D-CT)
202.224.4041
202.224.9750
Blanche Lincoln (D-AR)
202.224.4843
202.228.1371
Trent Lott (R-MS)
202.224.6253
202.224.2262
Richard Lugar (R-IN)
202.224.4814
202.228.0360
Mel Martinez (R-FL)
202.224.3041
202.228.5171
John McCain (R-AZ)
202.224.2235
202.228.2862
Claire McCaskill (D-MO)
202.224.6154
202.228.6326
Mitch McConnell (R-KY)
202.224.2541
202.224.2499
Robert Menendez (D-NJ)
202.224.4744
202.228.2197
Barbara Mikulski (D-MD)
202.224.4654
202.224.8858
Lisa Murkowski (R-AK)
202.224.6665
202.224.5301
Patty Murray (D-WA)
202.224.2621
202.224.0238
Ben Nelson (D-NE)
202.224.6551
202.228.0012
Bill Nelson (D-FL)
202.224.5274
202.228.2183
Barack Obama (D-IL)
202.224.2854
202.228.5417
Mark Pryor (D-AR)
202.224.2353
202.228.0908
Jack Reed (D-RI)
202.224.4642
202.224.4680
Harry Reid (D-NV)
202.224.3542
202.224.7327
Pat Roberts (R-KS)
202.224.4774
202.224.3514
John Rockefeller (D-WV)
202.224.6472
202.224.7665
Ken Salazar (D-CO)
202.224.5852
202.228.5036
Bernard Sanders (I-VT)
202.224.5141
202.228.0776
Charles Schumer (D-NY)
202.224.6542
202.228.3027
Jeff Sessions (R-AL)
202.224.4124
202.224.3149
Richard Shelby (R-AL)
202.224.5744
202.224.3416
Gordon Smith (R-OR)
202.224.3753
202.228.3997
Olympia Snowe (R-ME)
202.224.5344
202.224.1946
Arlen Specter (R-PA)
202.224.4254
202.228.1229
Debbie Stabenow (D-MI)
202.224.4822
202.228.0325
Ted Stevens (R-AK)
202.224.3004
202.224.2354
John Sununu (R-NH)
202.224.2841
202.228.4131
Jon Tester (D-MT)
202.224.2644
202.224.8594
Craig Thomas (R-WY)
202.224.6441
202.224.1724
John Thune (R-SD)
202.224.2321
202.228.5429
David Vitter (R-LA)
202.224.4623
202.228.5061
George Voinovich (R-OH)
202.224.3353
202.228.1382
John Warner (R-VA)
202.224.2023
202.224.6295
Jim Webb (D-VA)
202.224.4024
202.228.6363
Sheldon Whitehouse (D-RI)
202.224.2921
202.228.6362
Ron Wyden (D-OR)
202.224.5244
202.228.2717
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