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HEPATITIS C MOVEMENT FOR AWARENESS
May 26, 2003

HEPPERS UNITED!

DON'T LET A HANDFUL OF HIRED GUNS CONNECTED TO THE CDC
AND YOU-KNOW-WHO-DRUG-COMPANYS C0NTROL OUR DESTINY.

DEMAND A ROLE IN THE HEPATITIS C BILL
NOW PENDING IN THE UNITED STATES SENATE.

JOIN THE TRUE GRASS ROOTS HEPATITIS C MOVEMENT
IN TELLING POLITICIANS IN WASHINGTON WHAT WE WANT,
AND DON'T LET THEM JUST GIVE US WHAT THE SPECIAL INSTEREST GROUPS WANT US TO HAVE...

HEPPERS UNITED!

READ ON:

HMAwareness@aol.com
11 Glover Circle, Staunton, Virginia 244401
TEL: 540-248-4994

Hepatitis C Weekend of Awareness Consensus Statement

May 25, 2003

Grass roots Hepatitis C activists, from across the United States and Canada, gathered in Washington, DC from May 21 through May 25, 2003 for the second annual Weekend of Awareness.

Approximately 100 leaders of support groups, veteran's organizations, Internet chat rooms, counselors, political action committees, and others gathered at the Holiday Inn Downtown where they received reports from other activists as well as professionals, on the state of Hepatitis C in the United States, Canada, North America, and rest of the world.

Hepatitis C (HCV) is a virus that is transmitted by blood to blood contact that is now four more times more prevalent than HIV/AIDS. It is estimated that up to 5 million Americans are infected with the deadly virus (US Cenus Bureau, July 31, 2001).

HCV is the leading cause for liver transplants in the United States and up to 10,000 Americans will die due to complication from the virus this year.

CONSENSUS OF THE 2003 WEEKEND FOR AWARENESS:

Government, at all levels in the United States, is doing far too little to combat HCV. Conservative estimates place the costs of lost productivity and medical care arising from chronic Hepatitis C in the United States at over $600 Million annually and such costs are expected to increase in the absence of expanded prevention and treatment efforts.

Legislation was filed in the United States Senate on May 22, 2003 "to direct the Secretary of Health and Human Services to establish, promote, and support a comprehensive prevention, research, and medical management referral program for Hepatitis C infection."

Senate Bill 1143
The Hepatitis C Epidemic Control and Prevention Act
is sponsored by Senator Edward M. Kennedy, of Massachusetts,
and Senator Kay Bailey Hutchison, of Texas.

While the Hepatitis C Movement for Awareness enthusiastically supports most provisions of 1143, we feel there are several provisions in the bill that raise serious questions. Among them is a provision that would link Hepatitis C with HIV/AIDS and Sexually Transmitted Disease (STD) programs. Hepatitis C must be addressed separately and apart from HIV and must not be paired with HIV and STD. It is primarily a blood-borne virus and rarely transmitted through sexual activities.

In the bill, the recommendations and guidelines of the National Hepatitis C Prevention Strategy "provide a framework for Hepatitis C prevention, control, research, and medical management referral programs." However, the National Hepatitis C Prevention Strategy states that "the most effective means to prevent HCV infection and its consequences is to integrate Hepatitis C prevention activities into existing clinical services and public health programs, such as those for the prevention and treatment of human immunodeficiency virus (HIV)/Acquired Immine Deficiency Syndrome (AIDS), sexually transmitted diseases (STDs) and drug use."

Additionally, guidelines for allocating grants and funding to organizations and entities professing to provide "education," "training," "outreach" and other services fail to define the qualifications those organizations and entities must meet to be eligible for funding through this Act. Instead, the guidelines are proposed to be set up by the Secretary of Health and Human Services (HHS). We feel those qualifications and guidelines must be defined in 1143 and the Secretary should be responsible for enforcement procedures.

The $90 million being proposed by this bill must be spent in the most efficient and effective manner to make sure the Act serves people with Hepatitis C.  The Act would allow the Secretary of HHS to "award grants to, or enter into contracts or cooperative agreements with states, political subdivisions of states, Indian tribes, or nonprofit entities that have special expertise relating to HCV, to carry out activities..."

"To be eligible for a grant, contract, or cooperative agreement..., an entity shall prepare and submit to the Secretary an application in such time, in such manner, and containing such information as the Secretary may require," the bill states.

The Hepatitis C Movement for Awareness, after reviewing the proposed Act, concluded that the guidelines for all applications must be clearly defined in the legislation, and voted on by Members of Congress. Defining these guidelines must not be left up to bureaucrats in HHS.

We also have serious problems with the proposed make-up of a proposed "Liver Research Advisory Board." In our opinion, as currently being proposed there would be too little representation from the grass roots HCV community and private medical sector.

Overall, however, we support Senate Bill 1143, but feel sponsors should have reached out to a broader base of People with Hepatitis C in the United States for input on developing the legislation. There are, unfortunately, several provisions in the bill that we feel must be amended before we can recommend that our elected representatives in the 108th Congress support 1143.

We have asked several Members of Congress, including United States Representitive Sheila Jackson Lee and United States Representative Chris Bell, to see a study or investigation of Hepatitis C by the General Accounting Office.  This study would help Congress better understand the Hepatitis C virus and allow lawmakers to develop effective and cost effective legislation to combat." There is no reason that plan cannot be achieved through amending Senate Bill 1143. The Hepatitis C Movement for Awareness asks that all action on 1143 be put on hold pending the GAO study.

FOOTNOTE: A Hepatitis C Movement for Awareness Summit on Senate Bill 1143 is being arranged to be held in Washington, DC in coming weeks. The Summit will provide sponsors and supporers of the bill an opportunity to meet with grass roots HCV activists and discuss the bill. It will also give lawmakers an opportunity to hear from grass roots activists as opposed to professional lobbyists and government bureaucrats. We urge all parties iinvolved to contact representatives of Hepatitis C Movement for Awareness so that inclusion rather than exclusion can become part of the process.

Patricia Lupole Ed Wendt
National Coordinator Editor, Hep C Intelligence Report
Hepatitis C Movement for Awareness  
   
Dr. Richard Darling, DDS
Founder, Prorate NIH
Norm Seiff
Asst. Nat'l Coordinator
HMA

 

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