NVHR Welcomes Support of National Hepatitis C Advocacy Council In Fight to Address Chronic Viral Hepatitis

FOR IMMEDIATE RELEASE
Contact: Phil Blando, 202-534-1772
September 24, 2010 pblando@abmpartnersllc.com


NVHR Welcomes Support of National Hepatitis C Advocacy Council
In Fight to Address Chronic Viral Hepatitis

Washington, DC—The National Viral Hepatitis Roundtable (NVHR) is pleased to welcome the National Hepatitis C Advocacy Council -- the nation’s first community-based hepatitis C advocacy coalition -- to its ranks and looks forward to building on the Council’s hard-fought successes in the public policy arena, NVHR announced today. Given the depth and breadth of NVHR’s reach, the Council will now unite with NVHR and allow the community to speak with one voice.

“NVHR is pleased to have the National Hepatitis C Advocacy Council join our ranks,” said Ms. Lorren Sandt, NVHR Chair and Executive Director of Caring Ambassadors Program, based in Portland, Oregon and the Founder of the Council. “Over the past decade, the Council has done extraordinary work to educate policymakers and the general public about hepatitis C and has laid the foundation for important public policy successes in recent years. We look forward to using the Council’s passion and commitment through NVHR to advance a public health agenda that addresses the viral hepatitis crisis once and for all.”

“For the past decade, the National Hepatitis C Advocacy Council has been steadfast in its efforts to promote a national, comprehensive strategy for addressing hepatitis C. We have been on the front lines in Washington and state capitals and are proud of our results in putting hepatitis C on the political radar screen,” said Michael Carden, National Hepatitis C Advocacy Council President, who is with SUNY Downstate Medical Center, based in Brooklyn, NY. “Now is the time for the community to speak with one voice for the entire spectrum of viral hepatitis.”

The National Hepatitis C Advocacy Council was founded in 2000 and is the nation’s first hepatitis C coalition. Comprised of 27 community-based organizations operating from coast to coast, the Council enabled the hepatitis C community to have a voice on Capitol Hill and urged policymakers to pursue a comprehensive public-health strategy for detecting, treating, and preventing viral hepatitis.

Over the past decade, the Council scored some very notable successes on Capitol Hill. In 2003, at its urging, the first-ever hepatitis C legislation was introduced by the late Senator Edward Kennedy (D-Mass.) and Senator Kay Bailey Hutchison (R-Texas) and former Representative Heather Wilson (R-NM) and Representative Edolphus Towns (D-NY). The following year, the Government Oversight Committee, chaired by former Representative Tom Davis (R-Va.), held a congressional hearing to examine policy issues associated with hepatitis C. This work laid an important foundation for introducing a more comprehensive viral hepatitis bill and securing bipartisan legislation in this Congress, sponsored by Representatives Mike Honda (D-Calif.), Charlie Dent (R-Pa.), and Bill Cassidy (R-La.) that has a total of 73 bipartisan supporters.and Senate legislation sponsored by Senator John Kerry (D-Mass.)

An estimated 5.3 million Americans have been infected with chronic viral hepatitis B or C – and with most unaware of their infection, millions are at risk of developing life-threatening complications, especially African Americans and Asian Americans. Without detection and prompt treatment, chronic viral hepatitis leads to liver cancer, cirrhosis, or liver failure.

NVHR is a coalition of more than 170 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. www.nvhr.org
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www.nvhr.org

Kerry Introduces Bill to Fight Viral Hepatitis

Kerry Introduces Bill to Fight Viral Hepatitis

For Immediate Release: Thursday, August 5, 2010

CONTACT: DC Press Office, (202) 224-4159 (202) 224-4159 (202) 224-4159 (202) 224-4159 (202) 224-4159 (202) 224-4159 (202) 224-4159 (202) 224-4159

WASHINGTON, D.C. – Senator John Kerry (D-Mass.), today introduced the Viral Hepatitis and Liver Cancer Control and Prevention Act of 2010, which calls for a national strategy to prevent and control Hepatitis B and C. Congressman Mike Honda (D-CA) is the legislation’s lead sponsor in the House of Representatives. The bill has been endorsed by over 100 hepatitis focused organizations from across the nation.

“Viral hepatitis is a silent killer,” Senator Kerry said. “Most people don’t even know they have hepatitis until it causes liver damage or even cancer years after the initial infection. We can easily avoid these needless tragedies with prevention, surveillance programs, and by educating Americans about this deadly disease. The bill I’m introducing today will help create a national strategy to combat and prevent hepatitis, hopefully ending this silent affliction’s often deadly consequences.”

Viral Hepatitis contributes to the death of 15,000 Americans a year and threatens the health of 5.3 million more. It is more common than HIV/AIDS and is the leading cause of liver cancer. Most people don’t know they have hepatitis until it causes cancer or liver disease years after infection. This is largely because there is currently no federal funding of core public health services for viral hepatitis. Nor is there any federally funded chronic Hepatitis B and C surveillance system.

The Viral Hepatitis and Liver Cancer Control and Prevention Act aims to correct this by authorizing nearly $600 million over the next five years to fund a national strategy to prevent and control viral hepatitis. It directs the Secretary of Health and Human Services to develop a national plan for the prevention, control and medical management of viral hepatitis in coordination with the Centers for Disease Control and Prevention (CDC), the National Institutes for Health (NIH), the National Cancer Institute (NCI), the Health Resources and Services Administration (HRSA), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Agency for Healthcare Research and Quality (AHRQ) and the Department of Veterans Affairs (VA).

The legislation requires the development of a national plan that must include the following components:

education and awareness programs;
an expansion of current vaccination programs;
counseling regarding the ongoing risk factors associated with viral hepatitis;
support for medical evaluation and ongoing medical management;
increased support for adult viral hepatitis coordinators; and
the establishment of an epidemiological surveillance program to identify trends in incidence and prevalence in the disease.
The Viral Hepatitis and Liver Cancer Control and Prevention Act of 2010 also enhances SAMHSA’s role in hepatitis activities by providing the agency with the authority to develop educational materials and intervention strategies to reduce the risks of hepatitis among substance abusers and individuals with mental illness.

http://kerry.senate.gov:80/press/release/?id=77720c93-e5db-46a3-b02f-9bfe1814b4c7

Webinar: Hepatitis Advocacy in August

Learn about the important work that you can do in your own backyard
during the August recess to increase awareness of viral hepatitis among
your elected officials.

Agenda:

1:00 - 1:05: Welcome

1:05 - 1:15: Appropriations update

1:15 - 1:20: Legislation update

1:20 - 1:25: Q & A

1:25 - 1:35: August recess advocacy/Action Alert

1:35 - 1:45: Advocacy success stories

1:45 - 2:00: Questions, discussion, close

Webinar Details:

Title: Advocacy in August
Date: August 5, 2010

Time: 10AM Pacific Time / 1PM Eastern Time



Join this webinar:
Join Link: https://caringambassadors.ilinc.com/join/jchwrbj

Primary Dial-In: 1-800-201-2375

Alternate Dial-In: 1-469-759-7753

Passcode: 327238

Want to prepare your system ahead of time?
https://caringambassadors.ilinc.com/register/jchwrbj

World Hepatitis Day in Washington DC on May 19, 2010

This is a great video with highlights from last month’s World Hepatitis Day rally at the U.S. Capitol, courtesy of Satoko Sugiyama and the National Viral Hepatitis Roundtable. It is worth the 9 minutes of viewing.

http://www.youtube.com/watch?v=i1FOTJTWSkw

The World Hepatitis Alliance has started a You Tube and a Flickr page. You can access them and see World Hepatitis Day pictures from around the WORLD!

http://www.flickr.com/photos/50506646@N04/

http://www.youtube.com/user/worldhepday

Our Youngest Dragon Slayer Extraordinaire, Elijah, Speaks at WHD
http://www.youtube.com/watch?v=nbyMR8X_PNU

Lorren Sandt speaking at WHD Rally in DC
http://www.youtube.com/watch?v=On_3JhaYeuo

Shari Foster speaking at WHD Rally in DC
http://www.youtube.com/watch?v=ZHhopSxnoTY

Jane Pan ends speech with Will You Stand With Me?
http://www.youtube.com/watch?v=F1A7iUD8WSU

PeachStatePam's *Locks of Love* hair experience and Hepatitis C awareness
http://www.youtube.com/watch?v=WHYyPaWOmtI

World Hepatitis Day in Washington DC on 5-19-2010 pictures at Kodak
http://www.kodakgallery.com/gallery/sharing/shareRedirectSwitchBoard.jsp?token=228953846803%3A235454742&sourceId=533754321803&cm_mmc=eMail-_-Share-_-Photos-_-Sharer

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.


http://www.hivandhepatitis.com/hep_c/news/2010/0521_2010_a.html

Pictures needed for rally for hepatitis in DC on May 19!

Please pass this message forward..................

We need your help! We need pictures of loved ones we have lost due to hepatitis. We need at least 200!

Please send photo, name, birth year and death year (or as much info as you know)

Lorren Sandt
Lorren@HepCChallenge.org
Executive Director
Caring Ambassadors Program, Inc.
PO Box 1748
Oregon City, OR 97045
Phone: 503-632-9032 Direct Line: 503-632-9030
FAX: 503-632-9038


Save the Date: High Noon, May 19, 2010: Rally for Hepatitis on Capitol Hill!

To learn more and to register to attend, endorse or support, visit www.nvhr.org or search This is Hepatitis on Facebook

"This Is Hepatitis: A Rally in Washington, D.C."

“This Is Hepatitis: A Rally in Washington, D.C.” on Wednesday, May 19 at 12:00pm.

Event: This Is Hepatitis: A Rally in Washington, D.C.
What: Rally
Start Time: Wednesday, May 19 at 12:00pm
End Time: Wednesday, May 19 at 3:00pm
Where: United States Capitol

To see more details and RSVP, follow the link below:

http://www.facebook.com/n/?event.php&eid=395491556473&mid=20c35e0G2852fb8cG4473b1bG7&n_m=figment%40nettally.com