Advocates Rally in San Francisco and Washington to Raise Awareness and Demand Funding for Hepatitis B an C

Advocates Rally in San Francisco and Washington to Raise Awareness and Demand Funding for Hepatitis B an C

By Liz Highleyman

SUMMARY: Hepatitis advocates gathered in San Francisco and Washington, DC, on May 19 -- World Hepatitis Day -- to bring attention to chronic hepatitis B and C and to call for increased funding for public education, testing, treatment, and care. Speakers described their experiences with stigma, difficulty accessing treatment, and side effects and suboptimal effectiveness of current hepatitis C therapies, while expressing hope for new directing-acting HCV drugs that are expected to start becoming available in the next couple years.

"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."


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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.


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