Finally, a bill that addresses Hepatitis C, we are all breathing a
collective sigh of relief. But, is it the bill we need? Though Bill
1143, is a step in the right direction, it is flawed and needs to be
rectified before the Hepatitis C Community should support it.

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PRESS RELEASE: Hepatitis C Weekend for Awareness
Consensus Statement
HEPATITIS C MOVEMENT FOR AWARENESS
HMAwareness@...
110 Glover Circle, Staunton, Virginia 244401
TEL:  540-248-4994

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 Census 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 Immune 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 the108th Congress support 1143.

We have asked several Members of Congress, including United
States Representative Sheila Jackson Lee and United States
Representative Chris Bell, to seek 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
supporters of the bill tan 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 involved to contact representatives of Hepatitis C
Movement for Awareness so that inclusion rather than exclusion
can become part of the process.