The budget of the National Institutes of Health is about to come up as part of funding for the fiscal year 2007 Labor-Health and Human Services and Education (L-HHS) Appropriations bill. Most in the medical community are pushing for a 5 percent increase in the NIH budget. I'd push for more if I thought there would be any political steam behind it.
Those of us with the Hermansky-Pudlak Syndrome type of albinism - or any of the other rare syndromes associated with certian types of albinism - have a unique, first-hand appreciation for the work of the NIH and the impact that institution makes on the health of Americans.
Frankly, I don't know where we'd be with HPS research were it not for the NIH. Most other institutions weren't interested in HPS and finding clinical treatments in the beginning. We're ultra rare. We didn't have a few million dollars to fund research. The population of people with HPS is largely made up of groosly underserved populations. Most of our members don't speak English as a first language. Most don't have flush bank accounts. Many rely on Medicaid, are underinsured, or don't have insurance at all. They're hardly the types that will be able to fly across the country on their own dime to see doctors.
But the things that spur research at the NIH are a little different than in other places. They weren't interested in us for the grant money we could bring in - they were interested in us for the clues that our disorder could provide science. They've also had the ability to bring our patients to the NIH and meet their varying needs (which in the case of a syndrome that can impact multiple organ systems can be extensive.) Because of that - we've had a natural history study underway at the NIH for more than a decade. We've currently got a Phase III clinical trial of Pirfenidone (which I am a part of) underway to help to treat the pulmonary fibrosis of HPS - and we are very close to launching two additional trials (we'll know more after conference about that.)
These trials are not only helping people with HPS, but all Americans with bleeding disorders, colitis, eye disorders and pulmonary fibrosis.
So, if you'd like to join with us in support of continued adaquate funding for NIH, here's some info:
Action Requested: Today, please contact your House Representative and Senators to request their support for health research and services funding, including for NIH, in the fiscal year 2007 Labor-Health and Human Services and Education funding resolution.
Deadline:To have maximum impact, please contact your Representative and Senators by noon Friday, February 2.
Background: Before the last Congress adjourned, it failed to finish the fiscal year 2007 Labor-Health and Human Services and Education (L-HHS) Appropriations bill. This legislation funds most health research and services, including the National Institutes of Health (NIH). Instead, Congress passed a bill, called a continuing resolution (CR), that funds these programs at fiscal year 2006 levels. The CR expires on February 15th. House and Senate L-HHS Appropriations subcommittees are currently drafting a funding resolution that will last through the end of FY2007. They are considering adding $2 billion to the resolution to increase funding for health and education programs. To ensure that NIH gets part of this additional funding, the Congress must hear that NIH is a top health priority. The ATS and other medical and health research organizations are requesting 5% funding increase for the NIH.
ActionCall or Fax your Representative Today.
You may contact your Representative’s office in Washington by phone using the Capitol Switchboard. Call 202.224.3121 and ask for your Representative’s office or give your home zipcode if you do not know their name. At the end of this e-mail is a list of House and Senate Appropriations Committee members. If your Senator or Representative is on this list, please make a special effort to call them.
When connected to the office, ask for the Health Legislative Assistant. If you leave a voicemail message, include your name and phone number so that the staffer can call you back. Identify yourself as a health provider from (your town) and ask your Representative to support the $2 billion supplement for the Labor-Health and Human Services and Education Appropriations bill, including a 5% funding increase for NIH.
Talking Points:• Without additional funding for the Labor-HHS bill, NIH will receive a small funding cut because the fiscal year 2006 funding level formula does not allocate inflationary increases.• NIH budgets have not kept pace with biomedical research and development inflation since 2003.• Without at least a 5% funding increase in 2007, the NIH will be unable to adequately respond to the explosion in biomedical research opportunities and to the public’s desire for continued progress in solving complex diseases.
Full House Appropriations Committee
Representative
Phone #
Fax #
Chairman David R. Obey (D-WI)202-225-3365 715-842-4488
John P. Murtha (D-PA) 202-225-2065 202-225-5709
Norman D. Dicks (D-WA) 202-225-5916 202-226-1176
Alan B. Mollohan (D-WV) 202-225-4172 202-225-7564
Marcy Kaptur (D-OH) 202-225-4146 202-225-7711
Peter J. Visclosky (D-IN) 202-225-2461 202-225-2493
Nita M. Lowey (D-NY) 202-225-6506 202-225-0546
Jose E. Serrano (D-NY) 202-225-4361 202-225-6001
Rosa L. DeLauro (D-CT) 202-225-3661 202-225-4890
James P. Moran (D-VA) 202-225-4376 202-225-0017
John W. Olver (D-MA) 202-225-5335 202-226-1224
Ed Pastor (D-AZ) 202-225-4065 202-225-1655
David E. Price (D-NC) 202-225-1784 202-225-2014
Chet Edwards (D-TX) 202-225-6105 202-225-0350
Robert E. “Bud” Cramer Jr. (D-AL) 202-225-4801 202-225-4392
Patrick J. Kennedy (D-RI) 202-225-4911 202-225-3290
Maurice D. Hinchey (D-NY) 202-225-6335 202-226-0774
Lucille Roybal-Allard (D-CA) 202-225-1766 202-226-0350
Sam Farr (D-CA) 202-225-2861 202-225-6791
Jesse L. Jackson Jr. (D-IL) 202-225-0773 202-225-0899
Carolyn C. Kilpatrick (D-MI) 202-225-2261 202-225-5730
F. Allen Boyd (D-FL) 202-225-5235 202-225-5615
Chaka Fattah (D-PA) 202-225-4001 202-225-5392
Steven R. Rothman (D-NJ) 202-225-5061 202-225-5851
Stanford D. Bishop, Jr. (D-GA) 202-225-3631 202-225-2203
Marion Berry (D-AR) 202-225-4076 202-225-5602
Barbara Lee (D-CA) 202-225-2661 202-225-9817
Tom Udall (D-NM) 202-225-6190 202-226-1331
Adam Schiff (D-CA) 202-225-4176 202-225-5828
Michael Honda (D-CA) 202-225-2631 202-225-2699
Betty McCollum (D-MN) 202-225-6631 202-225-1968
Steve Israel (D-NY) 202-225-3335 202-225-4669
Tim Ryan (D-OH) 202-225-5261 202-225-3719
C.A. Ruppersberger (D-MD) 202-225-3061 202-225-3094
Ben Chandler (D-KY) 202-225-4706 202-225-2122
Debbie Wasserman Schultz (D-FL) 202-225-7931 202-226-2052
Ciro Rodriguez (D-TX) 202-225-4511 202-225-2237
Ranking Member Jerry Lewis (R-CA) 202-225-5861 202-225-6498
C.W. Bill Young (R-FL) 202-225-5961 202-225-9764
Ralph Regula (R-OH) 202-225-3876 202-225-3059
Harold Rogers (R-KY) 202-225-4601 202-225-0940
Frank R. Wolf (R-VA) 202-225-5130 202-225-0437
James Walsh (R-NY) 202-225-3701 202-225-4042
David L. Hobson (R-OH) 202-225-4324 202-225-1984
Joe Knollenberg (R-MI) 202-225-5802 202-226-2356
Jack Kingston (R-GA) 202-225-5831 202-226-2269
Rodney Frelinghuysen (R-NJ) 202-225-5034 202-225-3186
Roger F. Wicker (R-MS) 202-225-4306 202-225-3549
Todd Tiahrt (R-KS) 202-225-6216 202-225-3489
Zach Wamp (R-TN) 202-225-3271 202-225-3494
Tom Latham (R-IA) 202-225-5476 202-225-3301
Robert Aderholt (R-AL) 202-225-4876 202-225-5587
Jo Ann Emerson (R-MO) 202-225-4404 202-226-0326
Kay Granger (R-TX) 202-225-5071 202-225-5683
John E. Peterson (R-PA) 202-225-5121 202-225-5796
Virgil Goode (R-VA) 202-225-4711 202-225-5681
John Doolittle (R-CA) 202-225-2511 202-225-5444
Ray La Hood (R-IL) 202-225-6201 202-225-9249
Dave Weldon (R-FL) 202-225-3671 202-225-3516
Michael K. Simpson (R-ID) 202-225-5531 202-225-8216
John A. Culberson (R-TX) 202-225-2571 202-225-4381
Mark Steven Kirk (R-IL) 202-225-4835 202-225-0837
Ander Crenshaw (R-FL) 202-225-2501 202-225-2504
Dennis R. Rehberg (R-MT) 202-225-3211 202-225-5687
John Carter (R-TX) 202-225-3864 202-225-5886
Rodney Alexander (R-LA) 202-225-8490 202-225-5639
Full Senate Appropriations Committee
Senator
Phone #
Fax #
Chairman Robert Byrd (D-WV) 202-224-3954 202-228-0002
Daniel Inouye (D-HI) 202-224-3934 202-224-6747
Patrick Leahy (D-VT) 202-224-4242 202-224-3479
Tom Harkin (D-IA) 202-224-3254 202-224-9369
Barbara Mikulski (D-MD) 202-224-4654 202-224-8858
Herbert Kohl (D-WI) 202-224-5653 202-224-9787
Patty Murray (D-WA) 202-224-2621 202-224-0238
Byron Dorgan (D-ND) 202-224-2551 202-224-1193
Dianne Feinstein (D-CA) 202-224-3841 202-228-3954
Richard Durbin (D-IL) 202-224-2152 202-228-0400
Tim Johnson (D-SD) 202-224-5842 202-228-5765
Mary Landrieu (D-LA) 202-224-5824 202-224-9735
Jack Reed (D-RI) 202-224-4642 202-224-4680
Frank Lautenberg (D-NJ) 202-224-3224 202-228-4054
Ben Nelson (D-NE) 202-224-6551 202-228-0012
Ranking Member Thad Cochran (R-MS) 202-224-5054 202-224-9450
Ted Stevens (R-AK) 202-224-3004 202-224-2354
Arlen Specter (R-PA) 202-224-4254 202-228-1229
Pete Domenici (R-NM) 202-224-6621 202-228-3261
Christopher Bond (R-MO) 202-224-5721 202-224-8149
Mitch McConnell (R-KY) 202-224-2541 202-224-2499
Richard Shelby (R-AL) 202-224-5744 202-224-3416
Judd Gregg (R-NH) 202-224-3324 202-224-4952
Robert Bennett (R-UT) 202-224-5444 202-228-1168
Larry Craig (R-ID) 202- 224-2752 202-228-1067
Kay Bailey Hutchison (R-TX) 202-224-5922 202-224-0776
Sam Brownback (R-KS) 202-224-6521 202-228-1265
Wayne Allard (R-CO) 202-224-5941 202-224-6471
Lamar Alexander (R-TN) 202-224-4944 202-228-3398
Those of us with the Hermansky-Pudlak Syndrome type of albinism - or any of the other rare syndromes associated with certian types of albinism - have a unique, first-hand appreciation for the work of the NIH and the impact that institution makes on the health of Americans.
Frankly, I don't know where we'd be with HPS research were it not for the NIH. Most other institutions weren't interested in HPS and finding clinical treatments in the beginning. We're ultra rare. We didn't have a few million dollars to fund research. The population of people with HPS is largely made up of groosly underserved populations. Most of our members don't speak English as a first language. Most don't have flush bank accounts. Many rely on Medicaid, are underinsured, or don't have insurance at all. They're hardly the types that will be able to fly across the country on their own dime to see doctors.
But the things that spur research at the NIH are a little different than in other places. They weren't interested in us for the grant money we could bring in - they were interested in us for the clues that our disorder could provide science. They've also had the ability to bring our patients to the NIH and meet their varying needs (which in the case of a syndrome that can impact multiple organ systems can be extensive.) Because of that - we've had a natural history study underway at the NIH for more than a decade. We've currently got a Phase III clinical trial of Pirfenidone (which I am a part of) underway to help to treat the pulmonary fibrosis of HPS - and we are very close to launching two additional trials (we'll know more after conference about that.)
These trials are not only helping people with HPS, but all Americans with bleeding disorders, colitis, eye disorders and pulmonary fibrosis.
So, if you'd like to join with us in support of continued adaquate funding for NIH, here's some info:
Action Requested: Today, please contact your House Representative and Senators to request their support for health research and services funding, including for NIH, in the fiscal year 2007 Labor-Health and Human Services and Education funding resolution.
Deadline:To have maximum impact, please contact your Representative and Senators by noon Friday, February 2.
Background: Before the last Congress adjourned, it failed to finish the fiscal year 2007 Labor-Health and Human Services and Education (L-HHS) Appropriations bill. This legislation funds most health research and services, including the National Institutes of Health (NIH). Instead, Congress passed a bill, called a continuing resolution (CR), that funds these programs at fiscal year 2006 levels. The CR expires on February 15th. House and Senate L-HHS Appropriations subcommittees are currently drafting a funding resolution that will last through the end of FY2007. They are considering adding $2 billion to the resolution to increase funding for health and education programs. To ensure that NIH gets part of this additional funding, the Congress must hear that NIH is a top health priority. The ATS and other medical and health research organizations are requesting 5% funding increase for the NIH.
ActionCall or Fax your Representative Today.
You may contact your Representative’s office in Washington by phone using the Capitol Switchboard. Call 202.224.3121 and ask for your Representative’s office or give your home zipcode if you do not know their name. At the end of this e-mail is a list of House and Senate Appropriations Committee members. If your Senator or Representative is on this list, please make a special effort to call them.
When connected to the office, ask for the Health Legislative Assistant. If you leave a voicemail message, include your name and phone number so that the staffer can call you back. Identify yourself as a health provider from (your town) and ask your Representative to support the $2 billion supplement for the Labor-Health and Human Services and Education Appropriations bill, including a 5% funding increase for NIH.
Talking Points:• Without additional funding for the Labor-HHS bill, NIH will receive a small funding cut because the fiscal year 2006 funding level formula does not allocate inflationary increases.• NIH budgets have not kept pace with biomedical research and development inflation since 2003.• Without at least a 5% funding increase in 2007, the NIH will be unable to adequately respond to the explosion in biomedical research opportunities and to the public’s desire for continued progress in solving complex diseases.
Full House Appropriations Committee
Representative
Phone #
Fax #
Chairman David R. Obey (D-WI)202-225-3365 715-842-4488
John P. Murtha (D-PA) 202-225-2065 202-225-5709
Norman D. Dicks (D-WA) 202-225-5916 202-226-1176
Alan B. Mollohan (D-WV) 202-225-4172 202-225-7564
Marcy Kaptur (D-OH) 202-225-4146 202-225-7711
Peter J. Visclosky (D-IN) 202-225-2461 202-225-2493
Nita M. Lowey (D-NY) 202-225-6506 202-225-0546
Jose E. Serrano (D-NY) 202-225-4361 202-225-6001
Rosa L. DeLauro (D-CT) 202-225-3661 202-225-4890
James P. Moran (D-VA) 202-225-4376 202-225-0017
John W. Olver (D-MA) 202-225-5335 202-226-1224
Ed Pastor (D-AZ) 202-225-4065 202-225-1655
David E. Price (D-NC) 202-225-1784 202-225-2014
Chet Edwards (D-TX) 202-225-6105 202-225-0350
Robert E. “Bud” Cramer Jr. (D-AL) 202-225-4801 202-225-4392
Patrick J. Kennedy (D-RI) 202-225-4911 202-225-3290
Maurice D. Hinchey (D-NY) 202-225-6335 202-226-0774
Lucille Roybal-Allard (D-CA) 202-225-1766 202-226-0350
Sam Farr (D-CA) 202-225-2861 202-225-6791
Jesse L. Jackson Jr. (D-IL) 202-225-0773 202-225-0899
Carolyn C. Kilpatrick (D-MI) 202-225-2261 202-225-5730
F. Allen Boyd (D-FL) 202-225-5235 202-225-5615
Chaka Fattah (D-PA) 202-225-4001 202-225-5392
Steven R. Rothman (D-NJ) 202-225-5061 202-225-5851
Stanford D. Bishop, Jr. (D-GA) 202-225-3631 202-225-2203
Marion Berry (D-AR) 202-225-4076 202-225-5602
Barbara Lee (D-CA) 202-225-2661 202-225-9817
Tom Udall (D-NM) 202-225-6190 202-226-1331
Adam Schiff (D-CA) 202-225-4176 202-225-5828
Michael Honda (D-CA) 202-225-2631 202-225-2699
Betty McCollum (D-MN) 202-225-6631 202-225-1968
Steve Israel (D-NY) 202-225-3335 202-225-4669
Tim Ryan (D-OH) 202-225-5261 202-225-3719
C.A. Ruppersberger (D-MD) 202-225-3061 202-225-3094
Ben Chandler (D-KY) 202-225-4706 202-225-2122
Debbie Wasserman Schultz (D-FL) 202-225-7931 202-226-2052
Ciro Rodriguez (D-TX) 202-225-4511 202-225-2237
Ranking Member Jerry Lewis (R-CA) 202-225-5861 202-225-6498
C.W. Bill Young (R-FL) 202-225-5961 202-225-9764
Ralph Regula (R-OH) 202-225-3876 202-225-3059
Harold Rogers (R-KY) 202-225-4601 202-225-0940
Frank R. Wolf (R-VA) 202-225-5130 202-225-0437
James Walsh (R-NY) 202-225-3701 202-225-4042
David L. Hobson (R-OH) 202-225-4324 202-225-1984
Joe Knollenberg (R-MI) 202-225-5802 202-226-2356
Jack Kingston (R-GA) 202-225-5831 202-226-2269
Rodney Frelinghuysen (R-NJ) 202-225-5034 202-225-3186
Roger F. Wicker (R-MS) 202-225-4306 202-225-3549
Todd Tiahrt (R-KS) 202-225-6216 202-225-3489
Zach Wamp (R-TN) 202-225-3271 202-225-3494
Tom Latham (R-IA) 202-225-5476 202-225-3301
Robert Aderholt (R-AL) 202-225-4876 202-225-5587
Jo Ann Emerson (R-MO) 202-225-4404 202-226-0326
Kay Granger (R-TX) 202-225-5071 202-225-5683
John E. Peterson (R-PA) 202-225-5121 202-225-5796
Virgil Goode (R-VA) 202-225-4711 202-225-5681
John Doolittle (R-CA) 202-225-2511 202-225-5444
Ray La Hood (R-IL) 202-225-6201 202-225-9249
Dave Weldon (R-FL) 202-225-3671 202-225-3516
Michael K. Simpson (R-ID) 202-225-5531 202-225-8216
John A. Culberson (R-TX) 202-225-2571 202-225-4381
Mark Steven Kirk (R-IL) 202-225-4835 202-225-0837
Ander Crenshaw (R-FL) 202-225-2501 202-225-2504
Dennis R. Rehberg (R-MT) 202-225-3211 202-225-5687
John Carter (R-TX) 202-225-3864 202-225-5886
Rodney Alexander (R-LA) 202-225-8490 202-225-5639
Full Senate Appropriations Committee
Senator
Phone #
Fax #
Chairman Robert Byrd (D-WV) 202-224-3954 202-228-0002
Daniel Inouye (D-HI) 202-224-3934 202-224-6747
Patrick Leahy (D-VT) 202-224-4242 202-224-3479
Tom Harkin (D-IA) 202-224-3254 202-224-9369
Barbara Mikulski (D-MD) 202-224-4654 202-224-8858
Herbert Kohl (D-WI) 202-224-5653 202-224-9787
Patty Murray (D-WA) 202-224-2621 202-224-0238
Byron Dorgan (D-ND) 202-224-2551 202-224-1193
Dianne Feinstein (D-CA) 202-224-3841 202-228-3954
Richard Durbin (D-IL) 202-224-2152 202-228-0400
Tim Johnson (D-SD) 202-224-5842 202-228-5765
Mary Landrieu (D-LA) 202-224-5824 202-224-9735
Jack Reed (D-RI) 202-224-4642 202-224-4680
Frank Lautenberg (D-NJ) 202-224-3224 202-228-4054
Ben Nelson (D-NE) 202-224-6551 202-228-0012
Ranking Member Thad Cochran (R-MS) 202-224-5054 202-224-9450
Ted Stevens (R-AK) 202-224-3004 202-224-2354
Arlen Specter (R-PA) 202-224-4254 202-228-1229
Pete Domenici (R-NM) 202-224-6621 202-228-3261
Christopher Bond (R-MO) 202-224-5721 202-224-8149
Mitch McConnell (R-KY) 202-224-2541 202-224-2499
Richard Shelby (R-AL) 202-224-5744 202-224-3416
Judd Gregg (R-NH) 202-224-3324 202-224-4952
Robert Bennett (R-UT) 202-224-5444 202-228-1168
Larry Craig (R-ID) 202- 224-2752 202-228-1067
Kay Bailey Hutchison (R-TX) 202-224-5922 202-224-0776
Sam Brownback (R-KS) 202-224-6521 202-228-1265
Wayne Allard (R-CO) 202-224-5941 202-224-6471
Lamar Alexander (R-TN) 202-224-4944 202-228-3398
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