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

Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009 (HR 3974)

A Call to Action! Do it TODAY!

Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009 (HR 3974)

Contact your Representative!

The Viral Hepatitis and Liver Cancer Prevention and Control Act of 2009 was introduced by U.S. Representatives Mike Honda, (D-CA) and Charles Dent (R-PA) with original cosponsors Bill Cassidy (R-LA), Edolphus Towns (D-NY), Anh “Joseph” Cao (R-LA), David Wu (D-OR), Todd Platts (R-PA), Donna M. Christiansen (D-VI), Barbara Lee (D-CA), Bobby Rush (D-IL), George Butterfield (D-NC), and Judy Chu (D-CA).

We need your Representative to join as cosponsor and show their support for addressing the viral hepatitis epidemic!

In order to pass this historic legislation, we need you to take a few minutes to make an important phone call or send an email! This bill affects people at risk for and chronically infected with hepatitis B and C by expanding education for patients and health care providers, increasing access to hepatitis testing and liver cancer screening, improving the capacity of health departments to detect outbreaks, and supporting viral hepatitis prevention and education programs across the U.S..

Make a Phone Call! Send an Email!

Call or email your U.S. House Representative’s office in Washington, DC. Ask to speak to the staff person who handles health care issues. You might get their voicemail or you might reach this person directly. Even if you reach voice mail, leave your message.

Sample call/email script:


“My name is ____________ , I live in (city, state), and I care about viral hepatitis. Hepatitis is a serious health problem in the U.S., in my District, and is a very important issue to me. I urge Representative _____________ to show leadership in the fight against hepatitis and liver cancer by cosponsoring Representative Honda and Dent’s Viral Hepatitis and Liver Cancer Control Act, HR 3974. Thank you.”

If there is time, tell them why this issue is important to you. You will probably only have time for 2-3 sentences. Members of Congress and their staff pay attention to their constituents. They need to hear how viral hepatitis affects you, the people you care for, your friends, family, and co-workers. Our lawmakers are unaware of viral hepatitis and how it impacts people in their Districts so they really need to hear from you!

You can reach your Representative by calling the Capitol Switchboard at 1-202-224-3121 or email Representatives directly from http:/writerep.house.gov. If you don’t know who your Representative is, go to www.congress.org http://www.congress.org and enter your zip code in the upper right corner. If your representative is already a sponsor, thank him for his sponsorship and offer to provide your experience/expertise in this issue as needed. Use your social and professional networks to get more people like you to call their representatives! Forward this email widely!

Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009 (HR 3974)

The Viral Hepatitis and Liver Cancer Control Act would amend the Public Health Service Act to establish, promote, and support a comprehensive prevention, research, and medical management referral program for chronic hepatitis B and chronic hepatitis C virus infection, to include the following:

· EDUCATION AND TRAINING
· HEPATITIS B and C DISEASE CONTROL
· IMMUNIZATION
· STATE HEALTH DEPARTMENT ADULT VIRAL HEPATITIS COORDINATORS
· MEDICAL REFERRAL
· SURVEILLANCE
· EXPANDED ACCESS TO SERVICES FOR UNDERSERVED AND
DISPROPORTIONATELY AFFECTED POPULATIONS
· RESEARCH
· INTEGRATION WITH EXISTING PROGRAMS


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C
Released:
January 11, 2010
Type:
Consensus Report
Topic(s):
Diseases, Public Health
Activity:
Prevention and Control of Viral Hepatitis Infections in the United States
Board(s):
Board on Population Health and Public Health Practice

Up to 5.3 million people—2 percent of the U.S. population—are living with chronic hepatitis B or hepatitis C. These diseases are more common than HIV/AIDS in the U.S. Yet, because hepatitis B and hepatitis C often present no symptoms, most people who have them are unaware until they develop liver cancer or liver disease many years later.

A new IOM study finds that these diseases are not widely recognized as serious public health problems, and as a result, that viral hepatitis prevention, control, and surveillance programs have inadequate resources. The report concludes that the current approach to the prevention and control of chronic hepatitis B and hepatitis C is not working. As a remedy, the IOM recommends increased knowledge and awareness about chronic viral hepatitis among health care providers, social service providers, and the public; improved surveillance for hepatitis B and hepatitis C; and better integration of viral hepatitis services.

Report at a Glance
Press Release (HTML)
Report Brief (PDF, HTML)

http://www.iom.edu/Reports/2010/Hepatitis-and-Liver-Cancer-A-National-Strategy-for-Prevention-and-Control-of-Hepatitis-B-and-C.aspx

http://www.iom.edu/~/media/Files/Report%20Files/2010/Hepatitis-and-Liver-Cancer-A-National-Strategy-for-Prevention-and-Control-of-Hepatitis-B-and-C/Hepatitis%20and%20Liver%20Cancer%202010%20%20Report%20Brief.ashx

This Is Hepatitis: A March on Washington, D.C. on World Hepatitis Day!

This Is Hepatitis: A March on Washington, D.C.

May 19, 2010 - Noon
United States Capitol
Washington, DC
http://www.nvhr.org/

Register to attend, support or endorse this event:
http://www.surveymk.com/s/BM5SWPC

Get the Word Out About Liver Cancer on World Cancer Day!

Get the Word Out About Liver Cancer on World Cancer Day!

Dear Advocates:

Thursday, February 4th is World Cancer AwarenessDay. What a great opportunity this is to help Dr. Mark Li, President of the Chinese American Medical Society, get the word out about liver cancer! Please read the letter from Dr. Li below and visit his website, http://livercancerfree.org/ to send letters to your representatives asking for their support for the Viral Hepatitis and Liver Cancer Prevention Act (HR 3974) and for increased appropriations for viral hepatitis prevention programs at the CDCand NIH!

The Liver Cancer Free Campaign

Together we Can

Are you aware of these FACTS?



· Liver cancer is the fifth most common cancer in the world.

· 80% of liver cancers are caused by Hepatitis B and Hepatitis C infections.

· Hepatitis B Virus is second only to tobacco as a cause of cancer in humans.

· Hepatitis C Virus is the numberone cause of liver cancer in the USA.

· It took $143M to control TB, but only $18M had been given to control Viral Hepatitis

I am a Primary Care Physician in practice for 28 years. In my work, I have experienced firsthand the impact and ravages of hepatitis infection on my patients and their families. I have seen patients die prematurely early of liver cancer caused by chronic hepatitis infection, leaving behind young children, mourned by their families and friends. Very often, they were in shock because they were unaware of their disease which did not exhibit any symptoms until it has progressed to a late stage beyond cure. And yet much of that pain and suffering could be avoided because hepatitis infection could be prevented, treated and controlled. Given adequate resources, education, prevention and surveillance programs can be put in place to stamp out hepatitis infection and liver cancer.

Because hepatitis is a silent disease, it is often ignored; its deadliness as a major cause of liver cancer overlooked, and its danger as a public health threat underestimated. As a result, funding for programs to control the spread of hepatitis infection has long been far from adequate. As a practitioner, I am compelled to act to raise awareness, to educate, to screen, to protect and to treat my patients. However, I believe that my personal efforts are insignificant. I am convinced that if we act together, we have more voice; we can be heard. Together we will have more strength. Our concerted efforts will impress our policy makers, and drive home the need for increased public funding for hepatitis programs. Driven by the conviction that "Together We Can", I am reaching out to you and through you to your friends, to write to your congressional representatives to petition for increased funding to CDC and NIH. This will enable the implementation of much needed research, prevention, and surveillance programs to control the spread of the deadly disease of hepatitis infection and to reduce the mortality and morbidity of liver cancers.

Please visit http://livercancerfree.org/ for more information.

Simply put in your name and address with zip code and the program will automatically match it to the corresponding district and send an email to your congressional representatives. While you are on livercancerfree.org, please click on the link to the Harvard Cancer Prevention website and join their over 5 million members to sign an e-petition to Congress.

Kindly forward this email to as many contacts as you can.

Sincerely

Mark Li MD
Coordinator January 28, 2010

Budgetary freeze will impact over 5M Americans afflicted with chronic viral hepatitis

Budgetary freeze will impact over 5M Americans afflicted with chronic viral hepatitis

Ms. Lorren Sandt, Chair of the National Viral Hepatitis Roundtable (NVHR) issued the following statement in advance of the President's State of the Union Address. 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:

"With tonight's State of the Union address, the President kicks off a national discussion about how best to fund our nation's priorities and values through the FY 2011 federal budget. While we recognize the need to address our nation's economic challenges, it is critical that policymakers understand that a budgetary freeze would leave more than 5 million Americans afflicted with chronic viral hepatitis out in the cold.

"In its budget proposal last year, the Administration proposed a meager increase of $51,000 for federal viral hepatitis prevention, treatment, and surveillance programs. Ultimately, Congress enacted a $900,000 increase in funding, but that figure is still woefully inadequate given the scope of this crisis. Our nation's public-health system cannot afford another year of neglect. Each and every day in 2010, more Americans will become infected and thousands more will silently progress to liver cancer, cirrhosis, or liver failure because they don't they know they are infected and need treatment. Without decisive federal action, Milliman estimates that public and private payer costs for treating chronic viral hepatitis C alone will more than triple by 2024 to $85 billion.

"Not surprisingly, earlier this month, the Institute of Medicine (IoM) issued a landmark report finding that the federal government has failed to provide adequate resources for national and local prevention, control, and surveillance programs for chronic viral hepatitis. As a result, the IoM has concluded that health-care providers lack the knowledge or awareness to screen and treat chronic viral hepatitis and that most infected Americans don't know they are infected, let alone getting treatment. The best available data finds that roughly 1 in 50 Americans are infected with chronic viral hepatitis. Although minorities are disproportionately affected, chronic viral hepatitis B and C afflict Americans from all walks of life.

"The Administration and Congress have an opportunity to make 2010 a year of action by funding chronic viral hepatitis prevention, treatment, and surveillance programs. Bipartisan legislation, 'The Viral Hepatitis and Liver Cancer Control and Prevention Act,' sponsored by Representatives Mike Honda (D-Calif.) and Charles Dent (R-Pa) would increase federal funding for comprehensive prevention, research, and medical management referral programs for chronic viral hepatitis B and C infection. The bill would provide an initial $90 million in funding in 2011 – with additional funding thereafter – that will increase the ability of the Centers for Disease Control and Prevention (CDC) to support state health departments in their prevention, immunization and surveillance efforts. Much of the legislation tracks with the IoM's recommendations. The legislation currently has 23 total bipartisan co-sponsors.

"It's time to bring a chronic illness afflicting more than 5 million Americans in from the cold and begin to address these diseases with the full force of decisive federal action they deserve."

SOURCE National Viral Hepatitis Roundtable

http://www.news-medical.net/news/20100128/Budgetary-freeze-will-impact-over-5M-Americans-afflicted-with-chronic-viral-hepatitis.aspx