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NC Council for Postive Living
A statewide, consumer-based organization promoting and expressing the needs of the PLWHA community of North Carolina. 
-----Original Message-----
From: Patrick Lee [mailto:nccpl@bellsouth.net]
Sent: Monday, January 13, 2003 4:42 PM
Cc: Susan B. Hunger; Tonja Cates; Al Sherman-Huntoon; Anthony M. Wright; Ashely Rozier, II; Bengie Hair; Beth Stringfield; Bill Brent; Carl Wheeler; Cliff Aitken; Curt Coomes; Dan Youngblood; Debbie Warren; Derrick Donald; Donna Zygmon; Evelyn Foust; Faye Duffin; Frank Murphy; Geneva Vauters; Greg Hege; Jacquelyn Clymore; Jacquie Clements; Jean Rone; Jennifer Sullivan; John Paul Womble; Kate Whetten-Goldstein; Kathleen Murphy; Kathy Kavanaugh; Kathy Knight; Kristy Caradori; Leslie Kooyman; Lora Dukes; Lorraine Mitchell; Marlene Clarke; Mary Washington; Melinda Emerson; Melissa Green; Michael Hollar; Michael McDuffie; Mick Sullivan; Nathan Thielman; Pastor Ed White; Pat Oxendine; Patricia Bartlett; retroart@buncombe.main.nc.us; Rob Lamme; Robert Kincaid; Robin Swift; Samuel Parker; Sarah Avery; Shawn Aldridge; Teresa Hart; 'John Bass'; 'Amy Faw'; 'Arthur Okrent'; 'Don Cavellini'; Steve Sherman; Alan Patterson; Mitchell Billings; Patrick Marquis Lee; Phyllis Gray
Subject: SAVE ADAP Alert (please forgive duplicates)
Dear Friends,
Thank you so much for all of your support and dedication throughout this ADAP crisis in North Carolina. The unfortunate reality is that North Carolina isn’t the only state with ADAP woes. Attached to this email you will find a Save ADAP Alert that highlights the problem that ADAP and AIDS funding in general are facing on the federal level. You will also find a final copy of the ADAP Sign on support letter. Please read the alert and send the letter, by fax, to your representatives in Washington, D.C., both House and Senate. If you have questions as to who is your representative, visit the U.S. House of Representatives website at www.house.gov, click the “write your representative link, and follow the directions to find your representative. You can perform a similar search at the U.S. Senate website, www.senate.gov.
Additionally, advocates in New York have secured a "Dear Colleague" sign-on letter for Senators. You will find also attached the letter from Senators Hillary Clinton and Charles Schumer of New York. Calls can be made and letters written to your Senate offices to encourage them to sign on to Senator Schumer's letter and champion the fight for increased ADAP funding!!!!!
Again, thank you for your dedication, and together we can "ensure that ADAPs nationwide are able to meet current and growing demand for access to HIV treatment therapies for low-income people living with HIV/AIDS in America."
Patrick M. Lee, JD
NC Council for Positive Living
537-B Huffman Mill Road
Burlington, North Carolina 27215
(336) 586-0062, ext. 24
(336) 586-0063 fax
nccpl@bellsouth.net email
www.ncpositiveliving.org
January 10, 2003
The Honorable Arlen Specter
Chairman
Subcommittee on Labor, Health, and Human Services and Education
190 Dirksen Senate Office Building
Washington, DC 20510
The Honorable Tom Harkin
Ranking Member
Subcommittee on Labor, Health, and Human Services and Education
184 Dirksen Senate Office Building
Washington, DC 20510
Dear Chairman Specter and Ranking Member Harkin:
We are writing to urge your support for a $62 million increase to the Senate's current $739 million level of funding in the FY 2003 Labor, Health and Human Services, and Education Appropriations Bill for the AIDS Drug Assistance Program (ADAP). This will bring the total increase to the President's budget to $162 million for a total of $801
million in ADAP funding.
Funded under Title II of the Ryan White CARE Act, ADAP makes it possible for low-income people to purchase medications to treat HIV/AIDS. As you know, Congress created a separate funding line to appropriate funds directly to ADAP, in large part to address the enormous need created by the advent of new combination drug therapies.
These funds go directly to aid the more than 120,000 Americans unable to afford the high cost of these life-saving and life-extending therapies who will depend on ADAP. Nationally, 85,000 people accessed medications through ADAP in 2002. In 2003, 92,200 are expected to access ADAP.
This year, 13 state AIDS Drug Assistance Programs (ADAPs) have been forced to take steps to limit access to life-saving HIV medications for uninsured and underinsured Americans due to inadequate funding. Texas, for example, has recently announced that in order to close its deficit, it will retroactively lower its income limits from 200% of the federal poverty level (300% with spend downs) to 140%. That action will require the removal of 2500 presently enrolled ADAP clients from the program by June 1, 2003. New York must also address a $16 million structural deficit in 2003 and a projected $50 million deficit in 2004 if either state/and or federal funding is not increased by that amount. According to the most recent National Alliance of State and Territorial AIDS Director's (NASTAD) Report, the following states have also initiated waiting lists as of 12/5/2002: Alabama (175), Indiana (34), Kentucky (62), Montana (2), North Carolina (60), Oregon (18) and South Dakota (43). Idaho, Nebraska and Wyoming have closed to new enrollees. In addition to New York and Texas, Colorado, Florida, Georgia, Nevada and South Carolina have projected the need to impose access restrictions in early 2003.
The very success of treatments in keeping people with HIV alive longer also continues to increase the need for ADAP. The cost of these necessary treatments is prohibitive B especially to people who are uninsured or underinsured. Prices for the most successful AIDS drugs continue to rise, as does the number of eligible patients seeking to access the program. That is why we are extremely concerned about the lack of adequate ADAP resources in 2003. Your Subcommittee included $100 million in the FY03 Labor-HHS
Appropriations bill. For this, we thank you tremendously. We are requesting your support for a $62 million increase to the program - a number we have come to carefully and conservatively. This increase will help ensure that those enrolled in ADAP treatment programs will not be cut off from essential therapies, and that treatment will be available for those who will be identified in the nationwide HIV outreach programs being mounted this year.
ADAP and the access it provides to care and treatment for low-income and uninsured HIV-positive Californians is crucial. With the proper tools, our communities can make full use of the community- based system of HIV care and support provided by the Ryan White CARE Act all titles of which are vital to this country and deserve the highest possible level of funding.
We are deeply grateful for the Committee's past support and thank you for your consideration of this request.
Sincerely,
Charles E. Schumer
Hillary Rodham Clinton
AIDS Treatment Advocates Coalition (ATAC) -
SAVE ADAP Committee
Dear Senator/Representative
The undersigned organizations serving the needs of people living with HIV write to ask that Congress provide a minimum of $162 million in additional federal funding for AIDS Drug Assistance Programs for FY 2003.
This year, 13 state AIDS Drug Assistance Programs (ADAPs) have been forced to take steps to limit access to life-saving HIV medications for uninsured and underinsured Americans due to inadequate funding. Texas, for example, has recently announced that in order to close its deficit, it will retroactively lower its income limits from 200% of the federal poverty level (300% with spend downs) to 140%. That action will require the removal of 2500 presently enrolled ADAP clients from the program by June 1, 2003. New York must also address a $16 million structural deficit in 2003 and a projected $50 million deficit in 2004 if either state/and or federal funding is not increased by that amount. According to the most recent National Alliance of State and Territorial AIDS Director’s (NASTAD) Report, the following states have also initiated waiting lists as of 12/5/2002: Alabama (175), Indiana (34), Kentucky (62), Montana (2), North Carolina (60), Oregon (18) and South Dakota (43). Idaho, Nebraska and Wyoming have closed to new enrollees. In addition to New York and Texas, Colorado, Florida, Georgia, Nevada and South Carolina have projected the need to impose access restrictions in early 2003.
One major factor driving increased ADAP need is enrollment growth, which is due to the success of the new drugs in decreasing deaths and slowing progression to AIDS. Since the introduction of effective combination HIV therapies in 1996, America’s death rate from AIDS has fallen by over 50%. Because people are staying alive longer, they need ADAP longer and so enrollment continues to climb. While this should be taken as a sign of the program’s success, resources flowing to ADAPs are not being increased to take care of the swelling numbers of people that are being kept alive.
Ironically, attempting to save money in the short term may cost taxpayers more money in the long term. Recent data presented by the University of Alabama at Birmingham at the International AIDS Conference in Barcelona demonstrates that the average cost of care for a person with early HIV disease is approximately $14,000 a year while waiting to treat that person until they are disabled costs about $34,000 a year.
Fears of particularly serious problems for FY 2003 are exacerbated by the expected arrival of new drugs that few programs in crisis are likely to be able to afford. Fuzeon (T-20), the first fusion inhibitor to reach the market, could provide urgently needed support for patients whose anti-retroviral options have run out when it is approved in early 2003 but the drug is expected to be expensive, which could force ADAPs to ignore the need for the drug. The second class of drugs that most ADAPs are unlikely to be able to afford are those to treat HCV. While HCV has become the number one cause of death among people with HIV, most states are resistant to adding new classes of treatment when resources are scarce.
Finally, in order to make best use of ADAP funding we ask that you fund required services provided under the Ryan White CARE Act at the highest possible levels. Without the support services provided by the CARE act, many ADAP clients would have no realistic access to the medical care and auxiliary services they require to maximize the usefulness of anti-HIV medical regimens.
We believe that it is imperative to provide life-extending AIDS drugs to all Americans in need. We hope that you will agree.
Sincerely,
ACT UP Atlanta
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ACT UP Miami
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ACT UP New York
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ACT UP Philadelphia
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ADAP Working Group
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African Services Committee, New York, NY
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AID Atlanta, Inc.
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AIDS Action
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AIDS Action Baltimore
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AIDS Action Coalition Huntsville, Alabama
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AIDS Action Committee of Massachusetts
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AIDS Alabama, Birmingham, Alabama
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AIDS Alliance of Martha's Vineyard
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AIDS Atlanta, Inc.
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AIDS Center of Queens County, Inc.
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AIDS Coalition of Texas Now! (ACT Now!)
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AIDS Community Research Initiative of America (ACRIA)
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AIDS Council of Northeastern, NY
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AIDS Foundation of Chicago
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AIDS Healthcare Foundation
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AIDS Project Los Angeles
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AIDS Project of Central Iowa
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AIDS ReSearch Alliance
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AIDS Rochester
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AIDS Service Organization of Alabama
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AIDS Services Center, Anniston, Alabama
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AIDS Services of Dallas
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AIDS Survival Project, Atlanta, GA
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AIDS Treatment Data Network
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AIDS Treatment News
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AIDS Vaccine Advocacy Coalition
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Alianza of New Mexico
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AMASSI, Inc.
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Bailey House, New York, NY
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Baltimore Commission on HIV/AIDS Treatment and Prevention
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Betances Health Center, New York, NY
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Birmingham AIDS Outreach
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Boston University Goldman School of Dental Medicine
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Boulder County AIDS Project
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CARE Resource, Miami, FL
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Catholic Social Services of Mobile, Alabama
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Center for Community Alternatives
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Dayspring AIDS Support Services, Augusta, ME
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East Alabama AIDS Outreach
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Eastern Triad HIV Consortium, North Carolina
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END/AIDS
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Families Connecting for Kids, The Adoption Exchange
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Florida AIDS Action
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Gay and Lesbian Medical Association
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Gay Men's Health Crisis
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Gay, Lesbian, Bisexual, Trangender Community Center of Baltimore and Central Maryland (GLCCB)
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Georgia ADAP Task Force
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Georgia Rural Urban Summit
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Global Campaign for Microbicides, Washington, DC
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Hepatitis C Action & Advocacy Coalition, San Francisco
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Hepatitis C Advocate Network, Inc (HepCAN)
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HepTREC Melrose Park, PA
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HIVandHepatitis.com
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HIVCare, San Francisco, CA
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HomeFront, New Jersey
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Human Rights Campaign
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IDC Research Initiative, Orlando, FL
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International AIDS Empowerment, El Paso, Texas
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International Foundation for Alternative Research in AIDS
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Jefferson County AIDS in Minorities, Birmingham, Alabama
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L.A. Gay and Lesbian Center
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Life Foundation, Honolulu, HI
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Lifelong AIDS Alliance Seattle, WA
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Long Island Association for AIDS Care (LIAAC)
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Los Angeles County Office of AIDS Programs and Policy
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Los Angeles Family AIDS Network (LAFAN)
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Metrolina AIDS Project
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Miami Beach Community Health Center, Inc.
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Michigan Persons Living with AIDS Task Force
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Milwaukee Lesbian, Gay, Bisexual, Trangender Community Center
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Minnesota AIDS Project
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Mobile AIDS Support Services
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Montgomery AIDS Outreach, Montgomery, Alabama
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Montrose Clinic, Houston, TX
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National AIDS Education and Services for Minorities, Inc.
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National AIDS Treatment Advocacy Project
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National Alliance of State and Territorial AIDS Directors
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National Coalition for Lesbain, Gay, Bisexual, and Trangender Health
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National Minority AIDS Council
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Nebraska AIDS Project
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New York AIDS Coalition
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New York City AIDS Housing Network
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North Carolina Council for Positive Living
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Nova Southeastern University, College of Dental Medicine
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P.L. Active Inc.
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Persad Center, Inc.
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Physicians' Research Network
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Positive Voice Washington, A HIV+ Coalition
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POZSeattle
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Project AZUKA, Inc.
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Project Inform
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Provincetown AIDS Support Group
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QueerTampa.com
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San Diego POZibilities
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San Francisco Communty Clinic Consortium
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San Mateo County AIDS Program
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Search for a Cure
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Selma AIDS Information and Referral, Selma, Alabama
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Sierra Foothills AIDS Foundation
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Southeast Georgia Rainbow Partners
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Spokane AIDS Network
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Staten Island HIV C.A.R.E. Network
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Tarzana Treatment Centers
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Tennessee AIDS Support Services, Inc.
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The Access Project
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The Institute for New Medicine
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Title II Community AIDS National Network
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Treatment Action Group
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Tucson Interfaith HIV/AIDS Network (TIHAN)
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Tyler AIDS Services, Inc.
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United Foundation for AIDS
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Vermont People with AIDS Coalition
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Vida/SIDA, Chicago, IL
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Visiting Nurse Health System/Hospice, Atlanta, GA
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West Alabama AIDS Outreach
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Williamsburg/Greenpoint/Bushwick HIV CARE Network (WGBAN)
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Zinberg Clinic, Cambridge Health Alliance
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For more information about your specific state, please contact one of our local organizers:
Bill Arnold (D.C.)
(202) 588-1775, weaids@tiicann.org
Lynda Dee (Maryland)
(410) 837-2437, Lyndamdee@aol.com
Jean-Michel Brevelle (Maryland)
(301) 890-5132, jmbrevelle@earthlink.net
Steve Carroll (Oregon)
(503) 288-6582, stevecarroll@attbi.com
Lei Chou (New York)
TheAccessProject@aol.com
Ryan Clary (California)
(415) 558-8669 x224, rclary@projectinform.org
Amanda Diers (Florida)
(813) 974-2838, amandaflaac@aol.com
Sue Gibson (Texas):
suegibson@nova1.net
Kathie Hiers (Alabama)
205-324-9822 ext. 331, Kathie@aidsalabama.org
Patrick Lee (North Carolina)
nccpl@bellsouth.net
Jim Musselwhite (Washington)
aeon97@tss.net
David Munar (Illinois)
(312) 922-2322, dmunar@aidschicago.org
Robert O'Brien (Pennsylvania)
(215) 803-5181, robrien@temple.edu
Jerry Spillman (California)
gspillman@earthlink.net
-----Original Message-----
From: Patrick Lee [mailto:nccpl@bellsouth.net]
Sent: Monday, January 13, 2003 12:46 PM
To: nccpl@bellsouth.net
Subject: Information Regarding National AIDS Funding
This is a national effort from the Federal AIDS Policy Partnership and the Community Mobilization workgroup. Please distribute widely. Apologize for duplicates.
Congress to Pass FY03 Budget Soon, Calls Needed Now to Ensure AIDS Funding Increases
Take Action: Contact your U.S. Senators and House Representative on Wednesday, January 15. Call the Capitol switchboard toll-free at 1-800-648-3516 and ask to be transferred to their offices.
Don't know who your representative is? Call 1-888-VOTE-SMART or visit http://www.vote-smart.org/index.phtml
Leave This Message: Please encourage your colleagues on the appropriation committee and in the House and Senate leadership to ensure that final negotiations of the 2003 budget include much needed funding increases for AIDS prevention, global AIDS issues, Ryan White CARE Act programs, and other health care services that millions of people rely on for survival.
Background:
A new session began in Washington on January 7, 2003 when the 108th Congress convenes, and its top priority will be to complete Fiscal Year 2003 budget negotiations by the end of January. While the fiscal year began in October 2002, Congress has passed continuing resolutions to fund all government programs at current levels until mid-January. Congressional leaders may seek passage for a massive appropriations package, known as an omnibus bill, establishing annual funding levels for a broad array of federal programs. Under this scenario, Congress would likely consider the President's 2003 budget-which contained no funding increases for domestic and global AIDS prevention and care programs-as the blueprint for final funding amounts, which would spell disaster for AIDS programs already dangerously underfunded and at or above capacity.
Members of Congress may have opportunities to weigh in with the leadership and appropriators regarding funding increases for specific programs before the final budget is passed, but constituents must communicate their priorities now. Your calls can make a difference. A nationwide coalition of AIDS organizations and advocates is mobilizing on January 15th to urge Congress to prioritize HIV/AIDS funding for FY03 and FY04's budgets. Advocates will be calling their members of Congress while others will be meeting with the House and Senate leadership and appropriators on Capitol Hill and in local district offices. Be part of the grassroots movement to gain increased funding for critical AIDS programs. Make your phone call today and encourage your friends, family members, colleagues, and clients to join your efforts.
Patrick M. Lee, JD
NC Council for Positive Living
537-B Huffman Mill Road
Burlington, North Carolina 27215
(336) 586-0062, ext. 24
(336) 586-0063 fax
nccpl@bellsouth.net email
www.ncpositiveliving.org
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