| National March
on Washington Set
One of the nation's leading Hepatitis C advocacy
groups is calling upon congress to support US Rep. Sheila
Jackson Lee's request for the General Accounting Office to
investigate the Hepatitis C epidemic in the United States.
The Hepatitis C Movement for Awareness, at its
annual "Weekend for Awareness" from June 10 to 13,
is being asked to endorse Jackson Lee's request for the GAO
probe of Hepatitis C and its impact on the United States.
Hepatitis C is now four times more pevelant
than HIV/AIDs and will kill up to 12,000 Americans this year.
It is estimated the over 5.7 million Americans are infected
with the deadly virus. Most of them do not know it.
The GAO has balked at Jackson Lee's request
for the probe.
Leaders of the Movement for Awareness want the
GAO to conduct the investigation before Congress acts on legsilation
currently pending before the House and Senate to fund over
$100 million annually for Hepatitis C activities.
"We need this investigation so congress
can know what we are dealing with," says Ed Wends, editor
of Houston Forward Times and Texas coordinator the the Movement
for Awarness.
Wendt is a member of the City of Houston Hepatitis
C Task Force, recently appointed by Mayor Bill White.
Wendt will address the Weenend on Awarness on
Jackson Lee's resolution. Rep. Jackson Lee has been invited
to attend and speak on her resolution.
The Hepatitis C Movement for Awarness, the nation's
leading grass roots Hepatitis C advocacy group, praises Jackson
Lee for seeking the GAO probe.
Jackson Lee asked Comptroller General David
Walker for a General Accounting Office investigation of the
virus in a June 18 letter. She sought the investigation after
weeks of consultation with leaders of the Hepatitis C Movement
for Awareness (HMA), a nationwide organization of grass roots
HCV activists.
"HCV patients have much to celebrate today,"
said Tricia Lupole, national coordinator for HMA, "For
the first time, HCV will be looked at as a whole disease.
Nothing could prove more beneficial to HCV patients. We cannot
thank Congresswoman Jackson Lee and her staff for seeing the
needs of the HCV community."
Lupole says she hopes the investigation will
help answer several questions concerning Hepatitis C.
The National bill S-1143 is sponsored by Texas
Republican Senator Kay Bailey Hutchison and Massachusetts
and Democrat Senator Edward Kennedy. Congresswoman Jackson
Lee has concerns because of conflicting information, especially
within the medical community, regarding the Hepatitis C Virus.
Among other things, Lee is asking the GAO to determine whether
Hepatitis C is actually a sexually transmitted disease. She
is also asking the investigative arm of congress to look into
the high rate of infection among prison inmates.
Prisons were declared in "epidemic status"
in the sixties and remain that way today. "Prisons, juvenal
detention home and mental hospitals contribute significantly
to the spread of HCV", Lupole continues; "If we
want to stop the spread of this virus, we must stop the spread
of HCV in these institutions. Or, at the very least, tell
the people they have the infection before they are released.
It's like passing the buck to who will finally deals with
the patient."
Wendt, the Texas coordinator for HMA and a liver
transplant recipient, says HMA also wants language in S-1143
to require "annual audits and strict background checks"
of groups and organizations, especially 501c3 tax exempt groups,
that receive grants and funding from the Act.
"I hope the GAO report will help congress
adopt the necessary amendments to S-1143 so it will be acceptable,"
Wendt says. "Representative Lee's letter speaks for itself."
Lupole called Jackson Lee's letter to the Comptroller
General "a truly great day for the 5 million Americans
suffering from this disease." She said it should help
veterans who contracted the virus while on active duty, get
"badly needed service connected disability payments."
"For the first time, issues concerning
veterans and HCV infections will be addressed", said
Lupole: The Veterans Administration deny accountability for
the 10+% of veterans infected based on the CDC statement that
war is not a risk factor for HCV. Hopefully the GAO will dig
deep and see how infected veterans are and the numerous transmission
methods that existed before universal precautions were in
place."
Excerpt form Jackson Lee's letter to the Comptroller
General.
In order to design an appropriate strategy for
stopping the spread of HCV, we in Congress will need accurate
and reliable information about this insidious virus, and its
impact on American society. I understand that there is considerable
controversy and confusion even in the HCV field, regarding
how the virus is spread, and how best to stop it from spreading
further. It also seems that certain populations, such as Veterans,
the incarcerated, and minorities, may be being disproportionately
hit by this virus, or missed by public health efforts. This
suggests that in the future, we may need to tailor public
health policies to specifically target these at risk populations.
Again, addressing these issues properly will depend on accurate
and reliable data.
Please prepare a GAO report on HCV in the United
States, including: The following topics will be examined by
Comptroller General.
The history of HCV in the United States;
The prevalence of HCV in the general population today;
Populations that have been impacted disproportionately, including
the incarcerated;
Recommendations for improving diagnosis, prevention, and treatment
of such populations and others;
How the virus is spread, including whether HCV should be considered
as a sexually-transmitted disease;
Whether it is appropriate to group HCV with HIV for research,
prevention, and treatment purposes;
The extent to which those at risk for infection through receiving
contaminated blood products in the past have been identified
and notified;
Whether HCV infection should be considered a service-connected
disability for Veterans;
Diseases associated with or exacerbated by HCV infection;
Appropriate methods and timing for HCV treatment;
Best practices for education and prevention programs;
The adequacy of federal programs-including those at the Centers
for Disease Control, the Bureau of Prisons, the National Institutes
of Health, and the Veterans Administration-for addressing
the HCV epidemic.
Lupole continued: "Our goal is to stop
the spread of HCV. Congresswoman Shelia Jackson Lee and her
colleagues understand that.
Events for the national Weekend for Awareness
beging June 10 at 7 PM at the Holiday Inn Downtown, 1155 14th
Steet, Washington, DC.
The weekend includes a march from the National
Mall, across from the Capitol, at 11 AM on June 11th.
For further information, contact Patricial Lupole,
national coordinator, 540-248-7324, or email her at HMAwareness@aol.com.
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