By
Liz Highleyman
 |
|
Nick Panagopoulos
(at podium) presents mayoral proclamation recognizing
World Hepatitis Day to SF Hepatitis C Task Force co-chairs
Randy Allgaier (left of podium) and Dominique Leslie.
(Photo: Liz Highleyman)
|
|
"We're
here to give a voice and a face to a disease that remains in the
shadows," said Randy Allgaier, co-chair of the [San Francisco
Hepatitis C Task Force[http://www.hepcsf.org], speaking from the
steps of City Hall. "San Francisco must move out of the shadows
of this silent epidemic, because as we learned with HIV, silence
equals death."
The
local rally brought out about 50 activists under an unseasonable
light rain.
Nick Panagopoulos from the office of Mayor Gavin Newsom -- who
spearheaded the creation of the task force -- and Alex Randolph,
aide to Supervisor Bevan Dufty, both presented proclamations recognizing
World Hepatitis Day.
While
the rally focused on hepatitis C, Allgaier applauded the new Hep
B Free campaign which aims to raise awareness among the city's
large Asian community, a group at especially high risk for hepatitis
B.
Task
force co-chair Dominique Leslie related her journey with hepatitis
C, reflecting issues faced by many people with the disease. Leslie
was diagnosed with non-A/non-B hepatitis in 1988, the year before
the hepatitis C virus (HCV) was discovered. At the time, she was
told not to worry and that she didn't need to do anything. By
2000, she began to develop symptoms of liver disease, but was
told they were not due to HCV. Since then, she said she has been
denied treatment twice because she is transgender, and she is
now on the liver transplant waiting list.
"I
joined the task force so other people don't have to go through
what I face," she said. "I've been clean and sober for
more than 20 years, but active drug users are being denied treatment
and access to clinical trials."
Other
speakers represented the diverse face of hepatitis C. Todd is
an HIV positive former methamphetamine user who never used needles
and believes he got HCV through sex. Today he is clean and sober,
and both his HIV and HCV are undetectable, but "it was no
picnic getting there," he said.
Robin,
an older woman who was diagnosed with hepatitis C years ago, has
been free of the virus for 8 years with the help of holistic therapy
including acupuncture. "HCV is the first virus for which
we have a cure, but unfortunately the treatments are very difficult
and they don't work for everyone," she said.
Jack
and Havoc are 2 young men involved with UCSF's
UFO Project for young injection drug users. Jack started interferon,
but lasted only 3 months due to side effects; against all odds,
however, he managed to clear HCV anyway. But Havoc, a member of
San Francisco's new Drug
Users Union, lacks permanent housing, has not been able to
get on interferon treatment, and his liver disease is progressing.
Finally,
Karen Aziz compared her experiences as a woman dually diagnosed
with hepatitis C and breast cancer. When she learned she had breast
cancer, she recalled, she was told about all the available treatment
options and referred to a support group.
"Companies
sponsor walks for research, you see uplifting commercials, patients
are lauded as heroes, and everyone shows compassion," she
said. "It's quite the opposite for hepatitis C. "No
company wants to sponsor a race for the cure for this disease.
Our struggles are secret, silent, and lonely. We need funding
for full medical care for everyone who needs it so a diagnosis
of hepatitis C need not be a death sentence."
Below
is a press release from the National Viral Hepatitis Roundtable
about the Washington rally.
On
World Hepatitis Day 2010, NVHR Capitol Hill Rally Attracts
Hundreds of Americans & Five Members of Congress to
Support Increased Federal Funding for Viral Hepatitis
Washington,
DC -- May 19 -- Surrounded by a diverse group of 500 Americans
from the viral hepatitis B and C communities united in common
purpose on World Hepatitis Day 2010, the National Viral Hepatitis
Roundtable (NVHR) today hosted a Capitol Hill rally urging swift
action to fix the federal funding crisis for 5 million Americans
afflicted with chronic viral hepatitis. With the support of a
boisterous crowd, NVHR was joined by five Members of Congress,
Congressmen Hank Johnson (D-Ga.), Mike Honda (D-Calif.), Charles
Dent (R-Pa.), Anh "Joseph" Cao (R-La.), and Mike Cassidy,
M.D. (R-La.), whom all pledged to make the promise of increased
federal funding a reality this year and to address the viral hepatitis
funding problem once and for all.
"NVHR has a simple and direct message for Washington: we
are not going away and we will no longer be ignored. Until Congress
and the Administration act once and for all to fix the funding
crisis, we will be unrelenting in demanding adequate federal funding
for viral hepatitis screening, education, and intervention programs
for 5 million Americans," vowed Ms. Lorren Sandt, NVHR Chair
and Executive Director of Caring Ambassadors Program, based in
Portland, OR. "In the absence of federal leadership, the
annual costs of viral hepatitis to Medicare and Medicaid could
reach $85 billion in the coming decade. Swift federal action now
will help millions of Americans and help mitigate an otherwise
inevitable fiscal disaster. The time for action is now. Our community
and our nation cannot afford any more delays."
Today's rally featured 500 Americans from all walks of life united
in their cause to urge Washington to act. Representing 11 states
and the District of Columbia, the rally featured speakers representing
NVHR, the National Alliance of State and Territorial AIDS Directors,
the District of Columbia Department of Health, Veterans Aimed
towards Awareness, the Association of Asian Pacific Community
Health Organizations, Community AIDS National Network, Hepatitis
B Foundation, Greater Washington Viral Hepatitis Support Group,
Harm Reduction Coalition, North General Hospital, Hepatitis Education
Program, Chinese American Medical Society, Hepatitis B Initiative-DC,
National AIDS Treatment Advocacy Project, Hepatitis C Support
Project, Hepatitis C Association, and many others. The rally also
featured a Silent Vigil in tribute to those individuals lost to
hepatitis B or C.
Approximately 1 in 50 Americans are afflicted with chronic viral
hepatitis B or C -- with most unaware they are infected, especially
African Americans and Asian Americans. Without detection and treatment,
chronic viral hepatitis leads to liver cancer, cirrhosis, or liver
failure. In the absence of federal leadership, the research firm
Milliman estimates that public and private payers' cost of treating
chronic viral hepatitis C alone will more than triple by 2024
to $85 billion annually. Medicare and Medicaid would absorb a
disproportionate share of these added costs.
Earlier this year, the Institute
of Medicine (IOM) released a landmark report blasting the
federal government for its inadequate response to this crisis.
Since the January 2010 release of the IOM report, the Administration
has done little to help assuage the viral hepatitis community.
The Administration's budget proposal for 2011 would fund the Division
of Viral Hepatitis at a level actually lower than allocated a
decade ago during the Clinton Administration.
Bipartisan legislation, HR 3974, "The Viral Hepatitis and
Liver Cancer Control and Prevention Act," sponsored by Representatives
Mike Honda (D-Calif.), Charles Dent (R-Pa.) and 36 other House
Members would correct this shortfall. The Honda-Dent legislation
would increase the ability of the CDC to support state health
departments in their prevention, immunization and surveillance,
and referral to care efforts. Much of the Honda-Dent legislation
tracks with the IoM's recommendations.
NVHR is a coalition of more than 150 public, private, and voluntary
organizations dedicated to reducing the incidence of infection,
morbidity, and mortality from chronic viral hepatitis that afflicts
more than 5 million Americans. For more information, visit www.nvhr.org.
5/21/10
Source
National
Viral Hepatitis Roundtable. On World Hepatitis Day 2010, NVHR
Capitol Hill Rally Attracts Hundreds of Americans & Five Members
of Congress To Support Increased Federal Funding for Viral Hepatitis.
Press release. May 19, 2010.
