Hepatitis C Weekend of Awareness Consensus
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
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
"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
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
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.