TRAINING MANUAL FOR TREATMENT ADVOCATES: Hepatitis C Virus and Coinfection with HIV

Provided by Treatment Action Group (TAG)

DOWNLOAD:

The Manual as PDF (1.2MB)

Sections are available as PDF slides here.

November 2013

By Karyn Kaplan and Tracy Swan

The purpose of this manual is to provide information for you and your community. This information can be used to advocate for access to prevention and diagnosis of, and care and treatment for, hepatitis C virus (HCV).

The information here is written by and for people who are not medical specialists. We are treatment activists who learned about hepatitis C because it was a problem for people in our communities. We designed it to help you understand basic information about hepatitis C and coinfection with HIV: how it is transmitted, how to prevent hepatitis C, how a person can find out if he or she has hepatitis C, what happens to both HIV-negative and HIV-positive people who have hepatitis C, information used for making treatment decisions, and treatment options.

This manual is organized into short sections, and each section can be shared with a small group of people in less than one hour.

There are discussion points and action steps at the end of each section. The discussion points are intended to start conversations about the key issues raised in each section. The action steps are intended to start conversations about how to translate the key issues into advocacy in the community and to allow participants to find solutions together.

All of the sections are available as PDF slides here.

Source

Hep C test bill clears Assembly

Vocal New York, a grassroots advocacy group representing low income residents, and Assemblyman Kenneth Zebrowski, are pushing for the passage of Hepatitis-C testing legislation in the Senate, with only a few days left in session. Photo by Cassandra Hamdan.

By RICHARD MOODY

June 17, 2013

People in black and white tee-shirts with Vocal New York printed across their fronts crowded the Million Dollar Staircase in the Capitol; signs, that said, "Hep C Testing = Saved Lives," and "Fight Hep C," waved in the air; chants of, "No justice, no peace," and "End Hep-C" reverberated up and down the staircase; Tuesday was a day to make history in the eyes of some 50 people.

"You are all making history here," Assemblyman Kenneth Zebrowski, D-New City, told the group of advocates from Vocal New York, a grassroots advocacy group that speaks on the behalf of low-income people, and concerned individuals as they rallied behind a bill (A.1286/S.2750) — the first piece of legislation of its kind nationally — to add a new section to the public health law requiring certain health service providers to offer Hepatitis-C tests to people born between 1945 and 1965. The baby boomer generation has the highest prevalence of Hepatitis-C of any other generation, with 1 out of 30 having Hepatitis-C, according to the Centers for Disease Control and Prevention. Zebrowski said that, though the CDC is not 100 percent sure why baby boomers are so much more susceptible, he believes it's because blood was not typically tested before widespread transfusions began in the early 1990s

Under the bill, if the test should come out positive, the insurance provider must offer follow-up health care or refer the infected individual to a provider who can, including a Hepatitis-C diagnostic test.

The bill would also require the state health commissioner to evaluate the impact of the legislation and report the findings to the governor and the Legislature.

The bill passed in the Assembly on June 10 and advanced into its third reading in the Senate on the same day. The bill was sponsored in the Assembly by Zebrowski whose father, also an assemblyman, died in 2007 of Hepatitis-C. "Three to five million people have Hep-C and most of them don't even know," Zebrowski said. He seemed optimistic about the possibility of the bill passing in the Senate, saying that all it needs is a "little push."

"We will get this all signed into law."

Assemblywoman Joan Millman, D-Brooklyn, who co-sponsors the bill, said her message was simple, "We need to pass this bill."

The rally was emceed by Bobby Tolbert, a board member of Vocal New York, who opened the floor to personal testimonies. One such testimony was given by a Diane Nunez who was diagnosed with Hepatitis-C in 1998 and went for treatment in 2003. "This is a pandemic in our communities," said Nunez, "We have to end Hep-C."

Hadiyah Charles, a longtime HIV/AIDS prevention advocate associated with the Lower East Side Harm Reduction Coalition, praised state lawmakers for taking a big step in national history and said that with this legislation "New York should cause a domino effect" of other states passing similar legislation.

Sammy Santiago, who was tested in 1996 for Hepatitis-C and was declared "undetectable," earlier this year found out he had cirrhosis of the liver. He has been getting treatment for Hepatitis-C for four months. "In the first four weeks I was declared undetectable again," Santiago said. Santiago stressed the importance of getting tested for Hepatitis-C, "That's what's important; we all need to be educated."

Assemblyman Zebrowski said he remains optimistic that the Senate will pass the bill.

George Santana of the CitiWide Harm Reduction Coalition spoke about his experience after being diagnosed with Hepatitis-C. "I've done the treatment. It sucks, anyone who has done it knows what I'm saying, but it was worth it," Santana said. "We must continue to fight, because I know deep in my heart this bill will pass."

Source

Hepatitis Health Action Alert: Stop the Attacks on Prevention and Public Health Fund

Posted on January 23, 2012 on The Hepatitis B Foundation blog

Action Alert! The Hepatitis Community Responds to Health Care Reform. Tell Congress Not To Cut The Prevention and Public Health Fund

The Prevention and Public Health Fund is under attack in Congress once again. Some leaders in the House of Representatives would like to make drastic cuts to the Fund as part of negotiations on a long-term deal on the payroll tax cut and Medicare payments rates to medical providers.

The Prevention and Public Health Fund, part of the Affordable Care Act, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.

This fund is extremely important to the nation’s fight against the viral hepatitis epidemic. Later this year, the Department of Health and Human Services is expected to allocate $10 million from the Fund for viral hepatitis screening, testing, and education programs. This initiative will greatly help efforts to identify the millions of Americans who have chronic hepatitis B or C and link them to care and treatment.

Please take a few minutes to call Congress in support of this lifesaving program!

What YOU can DO:

Please call your U.S. House Representative and two U.S. Senators immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication.

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your United States Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voicemail, tell him/her:

“My name is _______________ and I live in (city/state). I am calling in strong support of the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved. I urge Representative_____________ to oppose any efforts to cut the Fund as part of the payroll tax/Medicare physician reimbursement negotiations.”

After you speak to your Representative’s office, call the Capitol Switchboard again and deliver the same message to the health care staff person in your two U.S. Senators’ office.

Thank you for taking the time to make a difference! Please spread the word.

Get involved with Hepatitis Health Action!

• Sign up for the Hepatitis Health Action email list by visiting http://groups.google.com/group/HepHealth or, email rclary@projectinform.org and we will make sure you are added.

• Join Hepatitis Health Action’s Facebook group: http://tinyurl.com/hephealthfacebook where you can participate in discussions with other advocates and share your ideas and strategies.

Hepatitis Health Action is a campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.

New Partnership forms to Address the Hepatitis B and C Epidemic in Europe

LUXEMBOURG, September 2, 2010 /PRNewswire/ -- At least 23 million European Union (EU) citizens are currently living with hepatitis B or hepatitis C[i]. In a direct response to the health burden this presents and the recent recognition by the WHO of the seriousness of hepatitis as a global health issue, a unique Partnership comprising key international public and private stakeholders has formed to drive the first EU-wide initiative on hepatitis B and C.

The new Partnership will work to achieve the formation of a European-wide strategy on the communication, prevention and management of viral hepatitis as a healthcare priority. As a first step towards this, the Partnership will host the Hepatitis B and C Summit Conference on 14-15th October 2010, where the latest research and advances will be presented and used to inform and drive future EU strategies and action plans in this neglected disease area. New studies will assess the impact of mobility of populations and patient self-help programmes in relation to the hepatitis epidemic.

Professor Angelos Hatzakis of Athens University Medical School and one of the co-chairs of the Partnership Steering Group said: "The burden and challenges associated with viral hepatitis across Europe require the active and concerted involvement of a broad range of stakeholders. Patients, specialists, primary health care providers, epidemiologists, policy makers, those responsible for health budgets, the general public, advocates, donors and the pharmaceutical sector should all work together to deliver the results so needed for these urgent diseases."

The new Partnership involves the European Association for the Study of Liver Disease (EASL) and the European Liver Patient Association (ELPA). Other contributors include the Viral Hepatitis Prevention Board (VHPB), the World Hepatitis Alliance (WHA) and the European Centre for Disease Prevention and Control (ECDC). The conference is supported by the European Commission's Directorate-General for Health and Consumer Protection (DG SANCO) and is being held under the auspices of the current EU Belgian presidency.

Nadine Piorkowsky, President of the European Liver Patients Association (ELPA) and co-chair of the Partnership Steering Group stated: "The development and implementation of specific policies to prevent, diagnose and control hepatitis B and C are long overdue as the burden of these diseases has significantly increased for the last ten years. This conference constitutes an important step forward as we will bring all the latest research to the table with a view to collectively evaluating the findings. The aim of this conference will be to present EU Member States with concrete policy recommendations on hepatitis B and C that can be implemented in their future health programmes."

References
[i] WHO Europe Region. Hepatitis Fact and Figures.
http://www.euro.who.int/en/what-we-do/health-topics/diseases-and-conditions/hepatitis/facts-and-figures.

Accessed 20.08.10

(Due to the length of this URL, it may be necessary to copy and paste this hyperlink into your Internet browser's URL address field. Remove the space if one exists.)

Notes to editors

Contact details

For more information on attending the event and to arrange interviews, journalists should contact our press office:

Isabelle Scali
+44-207-331-2324
Isabelle.scali@cohnwolfe.com

For more details on the conference and the full list of members of the Steering Group visit: http://www.hepsummit2010.org/

Distributed by PR Newswire on behalf of Hepatitis B and C Summit Conference

Source

Viral hepatitis is a silent killer that must be stopped

By Rep. Michael Honda (D-Calif.) - 07/13/10 06:24 PM ET

There is a silent crisis affecting America. This crisis endangers 5.3 million people in the U.S. and is more common than HIV/AIDS, yet it remains unrecognized as a serious public health threat. The crisis: viral hepatitis. Most people who have it are unaware, that is until they develop cancer or liver disease years later. Given this national tragedy in the making, we must educate people on the pervasiveness of Hepatitis B and Hepatitis C, identify effective measures on viral hepatitis prevention, control and surveillance programs, and provide a mechanism to implement these measures.

It is not a misnomer to call this a silent crisis. Few people realize how highly infectious viral hepatitis is. Hepatitis B is 100 times more infectious than HIV. Few realize that, left untreated, it can cause liver disease, liver cancer and premature death decades after infection. Few realize that about 2 billion people worldwide have been infected with Hepatitis B; more than 170 million people are chronically infected with Hepatitis C. Tragically, two-thirds of those infected, on average, are unaware of their status, which increases the chance of spreading the disease.

We cannot afford to be silent anymore. Our countrymen and women are dying daily, needlessly, from a disease that is entirely preventable if detected early. Each year, about 15,000 people die from liver cancer or liver diseases related to Hepatitis B and Hepatitis C. That’s more than 40 Americans dying every day, with no state or district in our nation exempt from its deadly reach.

Beyond the tragic and preventable loss of human life, the costs to our country are explicitly economic as well. Without effective prevention and vaccination methods in place, chronic Hepatitis B and C are expected to cost our country at least $20 billion in treatments during the next 10 years. As a result, over the same time frame, commercial and Medicare costs will more than double. Projecting further out, over the next 20 years, total medical costs for patients with Hepatitis C infection are expected to increase more than 2.5 times from $30 billion to more than $85 billion.

Contrast the costs for early detection and intervention with the costs for treatment post-infection. Hepatitis B vaccinations are $60, whereas treatment can cost up to $16,000 per year. Screening for Hepatitis C is $8 compared to treatment that can cost up to $25,000 per year. Untreated, these infections will develop into liver disease that can cost up to $110,000 per hospital admission.

We must, therefore, change the way hepatitis is diagnosed and treated. The Institute of Medicine (IOM) report on “Hepatitis and Liver Cancer” corroborates this conclusion by calling for a national strategy in the prevention and control of Hepatitis B and C. The report concludes that the current approach to the prevention and control of chronic Hepatitis B and 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.

My call for a national strategy is not unlike IOM’s. With bipartisan support, I introduced the Viral Hepatitis and Liver Cancer Control and Prevention Act, H.R. 3974, which provides almost $600 million over the next five years to treat hepatitis. The legislation mirrors many of the IOM’s recommendations and focuses federal efforts on a strategy that saves lives and makes our health system more efficient.

Specifically, H.R. 3974 increases interagency coordination between the Centers for Disease Control, National Institute for Health, National Cancer Institute, the Health Resource and Service Administration Agency for Healthcare Research and Quality and Veteran Affairs. It does so by implementing programs to increase awareness and enhance knowledge and understanding of Hepatitis B and C and requiring the CDC to integrate into existing programs immunization, prevention, and control programs and support counseling. The legislation expands current vaccination programs and establishes a national chronic and acute Hepatitis B and C surveillance program to identify incidence and prevalence in viral hepatitis and liver cancer.

Pass this bill and we bring together the common concerns of the diverse viral hepatitis community to fight chronic viral hepatitis by establishing, promoting and supporting a comprehensive prevention, research and medical management referral program. And we strengthen the ability of the CDC to support state health departments in the prevention, immunization and surveillance efforts.

Through this legislation, and with strategic investments in public health and prevention programs, billions of dollars can be saved, and so, too, the lives of tens of thousands of people in states and cities all over America. I urge all of you to join me in supporting activities that promote early detection and education. With your help, we can sound the alarm on this silent crisis.

Rep. Honda is the Chairman of the Congressional Asian Pacific American Caucus.

Source
 
Also See:

• House of Representatives Holds Hearing on the "Secret Epidemic" of Viral Hepatitis
• At Cao's Request, House Committee Holds Hearing on Viral Hepatitis, "the Secret Epidemic"
• Lawmakers urge quick passage of bill to boost detection, treatment of hepatitis
• We will not be silent on viral hepatitis

Action Alert

Action Alert

(posted July 9, 2010)

The House of Representatives is about to decide the funding amount for viral hepatitis prevention Do not miss this opportunity to tell your Representative to support an increase of up to $50 million for viral hepatitis prevention in FY2011.

YOU MUST CONTACT YOUR REPRESENTATIVE NOW”

The House Appropriations Subcommittee on Labor, HHS, Education and Related Agencies is about to decide the funding amount for viral hepatitis prevention for the Division of Viral Hepatitis (DVH) at the Centers for Disease Control and Prevention for Fiscal Year 2011.

On July 14th, the House of Representatives will begin to mark up the FY2011 Labor-HHS-Education bill which includes funding for viral hepatitis prevention. Given a highly partisan Congress, the economy and the President’s discretionary funding freeze, we are hearing that Appropriators have been told to cut funding across the HHS agencies. The President’s FY2011 Budget proposed the slightest funding increase of $1.8 million to DVH as part of a broader $26 million initiative at the National Center for HIV, Viral Hepatitis, STD, and TB Prevention directed towards gay men, men who have sex with men (MSM) and transgender Americans at risk for HIV. While we support this increased funding and appreciate the need for these prevention programs, it does not support core prevention funding such as hepatitis B and C counseling, testing, and referral, in addition to delivering hepatitis A and B vaccine, and establishing a national surveillance system of chronic hepatitis B and C. HAP and coalition partners will continue to work with Appropriators to include broader prevention priorities in report language.

The greatest opportunity we have to fund hepatitis prevention services is in newly authorized money within health reform’s Prevention and Public Health Fund. We believe it will be an enormous missed opportunity to overlook one of the most underfunded chronic, infectious diseases that continues to take a heavy toll on the individuals infected and contribute to greater health system costs. Hepatitis services have historically been and continue to be critically underfunded and despite the new evidence-based Institute of Medicine recommendations, hepatitis received none of the $650 million in prevention and wellness funding authorized under the American Recovery and Reinvestment Act nor any of the FY2010 $500 million authorized under the Prevention and Public Health Fund.

Congressional staff have told us that any increase hinges upon Members of Congress hearing now directly from state and local constituents on why increased funding is needed. Please continue to help us fight for increased viral hepatitis prevention funding by contacting your Representative about the tremendous need in your area of the country. Please take a few minutes to make these important phone calls!

HOW YOU CAN HELP

It is urgent that your calls be made immediately. Please call your Representative’s Washington, DC office. Ask to speak to the staff person who handles healthcare issues. Whether you speak to this person directly or leave a message, tell them:

“My name is and I’m a constituent of Representative . I am calling to urge your office to weigh in with Chairman Obey of the Subcommittee on Labor- HHS-Education to support increased funding for CDC’s Division of Viral Hepatitis for a total of $50 million. I urge you to invest in hepatitis prevention by leveraging funds from health reform. Hepatitis B and C affects over 5 million Americans. Chronic viral hepatitis is the leading cause of liver cancer, one of the top 10 killers of Americans every year, and the leading cause of liver transplants each year. Congress has historically cut or flat funded the Division of Viral Hepatitis. Money for prevention of hepatitis B and C is critical to increase counseling, testing and referral in order to begin to get a handle on this potentially life-threatening and expensive, chronic disease.”

You can call your Representative at 202.225.3121. You will get the Capitol switchboard. Ask to be connected to your Representative’s office.

Thanks for taking the time to make these important phone calls!

Background
The Division of Viral Hepatitis received $19.3 million in FY2010. With this level of funding, DVH can only support states and cities with an average federal funding award of $90,000. This is only enough for a staff position of the Adult Viral Hepatitis Prevention Coordinator (AVHPC) and not for the provision of core prevention services. An estimated 65-75% of infected Americans do not know their status, compared with 20-30% who do not know their HIV status. Compared to prevention funding for HIV at $728 million, STD at $154 million and TB at $144 million, viral hepatitis is the most underfunded and defunded disease, representing less than 2 percent of the budget of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD and Tuberculosis Prevention.

Policymakers must be made aware of the consequences of continued inaction. The costs to the healthcare system generated by advanced liver disease associated with chronic hepatitis C infection will increase from $30 billion to $85 billion per year. Medicare will be especially hard hit because two-thirds of Americans with chronic hepatitis C infection are baby boomers and the vast majority (75 percent) is unaware; these patients will soon age into Medicare and are likely to progress to advanced liver disease unless they are identified, evaluated and treated soon. In addition to causing 15,000 deaths each year, hepatitis will continue to be the most common cause of non-AIDS-related death in co-infected Americans with HIV with as many as 25percent co-infected with hepatitis C and 10 percent with hepatitis B. Acute hepatitis B will continue to disproportionately impact African Americans, particularly in the southern states, and chronic hepatitis B among Asian Americans where it is the leading cause of death and 10 percent remain infected. Even with a safe and effective vaccine against hepatitis B, 3,000 Americans will continue to die and roughly 1,000 babies will still be infected at birth.

The following Representatives are of great importance at this juncture since they are all Appropriators. If you live in any of these jurisdictions, it is of the utmost importance that you contact your Representative as his or her constituent to weigh in on increased funds for viral hepatitis prevention:

Alabama
Jo Bonner (R)
Robert Aderholt (R)

Arkansas
Marion Berry (D)

Arizona
Ed Pastor (D)

California
Lucille Roybal-Allard (D)
Barbara Lee (D)
Michael Honda (D)
Sam Farr (D)
Adam Schiff (D)
Ken Calvert (R)
Jerry Lewis (R) (Ranking Member on full Appropriations committee)

Colorado
John Salazar (D)

Connecticut
Rosa Delauro (D)

Florida
Allen Boyd (D)
Debbie Wasserman Schultz (D)
Bill Young (R)
Ander Crenshaw (R)

Georgia
Sanford Bishop (D)
Jack Kingston (R)

Idaho
Michael Simpson (R)

Illinois
Jesse Jackson Jr. (D)
Mark Kirk (R)

Indiana
Pete Visclosky (D)

Iowa
Tom Latham (R)

Kansas
Todd Tiahrt (R) (Ranking Member on Labor-HHS Subcommittee)

Kentucky
Ben Chandler (D)
Harold Rogers (R)

Louisiana
Rodney Alexander (R)

Maryland
Dutch Ruppersberger (D)

Massachusetts
John Olver (D)

Michigan
Carolyn Kilpatrick (D)

Minnesota
Betty McCollum (D)

Missouri
Jo Ann Emerson (R)

Montana
Dennis Rehberg (R)

North Carolina
David Price (D)

New Jersey
Steve Rothman (D)
Rodney Frelinghuysen (R)

New York
Nita Lowey (D)
José Serrano (D)
Maurice Hinchey (D)
Steve Israel (D)

Ohio
Tim Ryan (D)
Marcy Kaptur (D)
Steve LaTourette (R)

Oklahoma
Tom Cole (R)

Pennsylvania
Chaka Fattah (D)
Patrick Murphy (D)

Rhode Island
Patrick Kennedy (D)

Tennessee
Lincoln Davis (D)

Texas
Chet Edwards (D)
Ciro Rodriguez (D)
Kay Granger (R)
John Culberson (R)
John Carter (R)

Virginia
Frank Wolf (R)

Washington
Norman Dicks (D)

West Virginia
Alan Mollohan (D)

Wisconsin
David Obey (D) (Chair of full Appropriations committee and Labor-HHS subcommittee)

The Hepatitis Appropriations Partnership (HAP) is a national coalition based in Washington, DC and includes community-based organizations, public health and provider associations, national hepatitis and HIV organizations, and diagnostic, pharmaceutical and biotechnology companies from all over the country. HAP works with policy makers and public health officials to increase federal support for hepatitis prevention, testing, education, research and treatment. Please contact Colin Schwartz at 202.434.8005 or cschwartz@NASTAD.org if you have any questions or need additional information.

Source

NVHR Capitol Hill Rally: The World Hepatitis Day

Silent No More! Hundreds of advocates join forces in DC to demand policy change for more than 5 million Americans living with viral hepatitis. The rally was hosted by the National Viral Hepatitis Roundtable. http://www.nvhr.org/

HepatitisRoundtable
June 25, 2010

House of Representatives Holds Hearing on the "Secret Epidemic" of Viral Hepatitis

SUMMARY: One June 17 the U.S. House of Representative Oversight and Government Reform Committee held a hearing on viral hepatitis, a largely "silent epidemic" that has begun to receive more attention in the wake of the Institute of Medicine's report on liver cancer and hepatitis B and C. Assistant Secretary for Health Howard Koh and John Ward, director of the Centers for Disease Control and Prevention's Viral Hepatitis Program, participated in the meeting. The committee urged Congress to pass legislation introduced by Rep. Mike Honda and a bipartisan coalition of co-sponsors (H.R. 3974) that will increase funding for hepatitis B and C education, testing, and treatment.

Below is the text of a posting from the American Associations for the Study of Liver Diseases (AASLD) public policy web site describing the meeting.

Viral Hepatitis: The Secret Epidemic

Hearing by the Committee on Oversight and Government Reform, United States House of Representatives, June 17, 2010
 
In response to the Institute of Medicine (IOM) report last January -- Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C -- and AASLD's collaboration with the Trust for America's Health to bring attention to the burden of liver disease created by viral hepatitis, the House Oversight and Government Reform Committee held a hearing on Thursday, June 17th entitled Viral Hepatitis: The Secret Epidemic. During the hearing, the Committee urged Congress to pass legislation to boost the diagnosis and treatment of viral hepatitis. Witnesses included Representatives Hank Johnson, Bill Cassidy and Mike Honda as well as Dr. Howard Koh, Assistant Secretary for Health at the Department of Health and Human Services, Mr. Randy Mayer, Chief of the Bureau of HIV, STD and Hepatitis at the Iowa Department of Public Health, Mr. Michael Ninburg, Executive Director of the Hepatitis Education Project, Dr. Jeffrey Levi, TFAH, and Mr. Rolf Benirschke, Spokesperson for Hepatitis C Awareness.

Representative Cassidy did an excellent job articulating the impact of viral hepatitis should it go unchecked. He raised the point that it costs $50 to vaccinate a child against HBV, but costs over $1 million to treat a HBV patient over their lifetime should they receive a liver transplant. He cited the effectiveness of the vaccines for children program authorized by Congress during the Clinton administration and urged Congress to act again to fight viral hepatitis. He stressed that the most important thing that can be done is to educate providers, patients, and their families. In his testimony, Representative Honda advocated for the support and passage of his bill, HR 3974.

Assistant Secretary Koh -- accompanied by Dr. John Ward -- said that the interagency report would be completed this fall. He cited the need for more research for a HCV vaccine, to improve awareness of infection, reduce the spread of hepatitis in health care settings, and raise awareness within and testing of high risk populations. When asked by Chairman Towns (D-NY) whether hepatitis could be eliminated, Koh responded that it could be with the right resources. Koh also touched on screening guidelines and cited the US Preventive Services Taskforce (USPSTF) as just one of the groups that releases screening guidelines. Representative Bilbray (R-CA) asked about the target population for screening, saying he believes that the population should be viewed multi-dimensionally. Koh and Ward responded that risk based screening models have created barriers to screening and given the segment of the population most likely to be developing symptoms, an age based strategy could be more effective.

While both Democrats and Republicans on the committee agreed that something must be done to prevent the spread of viral hepatitis, the main obstacle remains funding for the needed programs.

6/25/10

Sources

AASLD. Viral Hepatitis: The Secret Epidemic. Public Policy web site (undated).

M Honda. It's Time to Get Serious About Viral Hepatitis. Roll Call. June 22, 2010

http://www.hivandhepatitis.com/hep_c/news/2010/0625_2010_a.html

At Cao's Request, House Committee Holds Hearing on Viral Hepatitis, "the Secret Epidemic"

At the request of Congressman Anh "Joseph" Cao (LA-02), the House Committee on Oversight and Government Reform held a hearing today on "Viral Hepatitis: the Secret Epidemic"

Publish Date: 2010-06-19
Click here to view related Website: U.S. Congressman Joseph Cao

(From PoliticalNews.me)

WASHINGTON - At the request of Congressman Anh "Joseph" Cao (LA-02), the House Committee on Oversight and Government Reform held a hearing today on "Viral Hepatitis: the Secret Epidemic."

Public health records show viral hepatitis, which is transmitted mainly through contact with infected blood, is the most common blood borne infection in the United States, and it is the nation's leading cause of liver cancer and liver transplants, representing one of the largest and costliest disease burdens. Over the next decade, about 150,000 Americans will die from liver cancer and end-stage liver disease associated with chronic hepatitis B and C.

In prepared remarks submitted for the record, Cao pointed out that between 3.5 to 5.3 million Americans--about 1% to 2% of the population--are infected with viral hepatitis. In Louisiana, some 80,000 people--about 1.8 percent of the population--have hepatitis C. Approximately 20,000 people have hepatitis B and 4.6% of adults are considered at risk.

In New Orleans and Jefferson Parish, about half of hepatitis B patients are Asian Americans in contrast to only 5% of the overall population. Among African Americans, rates of hepatitis C are twice the national average.

Cao said, "This is a grave public health crisis and human tragedy, especially given the asymptomatic nature of the disease, as 65% to 75% of individuals living with viral hepatitis are unaware they are infected until they develop symptoms of liver disease and cancer years later." Cao pointed out that only about half of the cases of hepatitis C in Louisiana are detected for inclusion on the state's hepatitis register.

Witnesses testifying at today's hearing included Congressman Hank Johnson (GA-04), himself a hepatitis C patient, and Congressman Bill Cassidy (LA-06), a leading Louisiana hepatologist.

The committee considered, among other things, a recent Institute of Medicine (IOM) study that found the government has failed to raise awareness, dedicate appropriate resources and properly identify, screen, treat and prevent viral hepatitis.

For example, the administrative budget for the Division of Viral Hepatitis of the Centers for Disease Control and Prevention represents only 2% of the agency's entire budget. Despite projected costs of $16 billion a year nationally, the federal government gives states an average of only $90,000 a year for hepatitis prevention in adults. This provides for little more than one staff position's salary and does not fund any actual services.

The report concluded that the federal government's "current approach to the prevention and control of chronic hepatitis B and hepatitis C is not working." The IOM attributed the lack of knowledge and awareness among the American public and health providers, the large health disparities, and the high mortality rates to the lack of dedicated resources and national leadership.

Cao said, "By calling attention to viral hepatitis at the Congressional level, we hope to focus attention on this 'secret epidemic' and channel resources toward its prevention, more effective treatmen and cure."
 
http://bignews.biz/?id=886175&keys=Congressman-Joseph-Cao-HepatitisB

Lawmakers urge quick passage of bill to boost detection, treatment of hepatitis

By Julian Pecquet - 06/17/10 03:01 PM ET

Lawmakers on the House Oversight panel on Thursday urged Congress to quickly pass legislation to boost the detection and treatment of viral hepatitis, the leading cause of liver cancer in the United States.

The Oversight and Government Reform Committee held the first hearing in several years on the deadly disease, which disproportionately affects blacks and Asians, and pressed for passage of a bipartisan bill that would boost funding by $600 million over the next five years.

The hearing comes on the heels of an Institute of Medicine (IOM) report that highlighted deficiencies with the federal government's response to the epidemic. The report contains two dozen expert recommendations for improvement, including enhanced screening, physician education and the creation of a coordinated system to identify people who have the disease and refer them to care.

About 5.3 million Americans are believed to have hepatitis — the disease causes 12,000 to 15,000 deaths a year — though many don’t know it.

"The current approach [...] is not working," the IOM report says.

The legislation under consideration, introduced in October by Rep. Mike Honda (D-Calif.), has 52 bipartisan co-sponsors. The "Viral Hepatitis and Liver Cancer Control and Prevention Act" is currently in the Energy and Commerce Committee.

The bill would charge the secretary of Health and Human Services with developing and implementing a plan for the prevention, control and medical management of hepatitis B and C; it would also provide federal funding for state-based screening and early intervention programs.

Honda said the bill would eventually save billions of dollars by identifying sick people early. A study by the research firm Milliman found that without federal leadership, the cost of treating hepatitis C alone could more than triple, to $85 billion a year, by 2024.


"We can do a whole lot better than what we're doing," said Oversight panel chairman Edolphus Towns (D-N.Y.). "I think it's a disgrace to have a problem of this nature and to not commit resources."

The panel heard testimony from Honda and Reps. Bill Cassidy (R-La.) and Hank Johnson (D-Ga.). Cassidy is a hepatologist who co-sponsored the bill, and Johnson last year acknowledged he was undergoing treatment for hepatitis C.


Cassidy applauded former President Bill Clinton's children’s vaccination program and said the Honda bill would "similarly save lives." But debate quickly descended into budgetary politics.

Oversight ranking member Darrell Issa (R-Calif.) said Republicans would not vote for any new directed spending unless it's part of the budget bill, which has stalled.

Meanwhile, Democrats bristled at Issa's description of the word "earmark" to describe the bill.


A coalition of more than 175 public and private organizations launched a print ad campaign on Tuesday to coincide with the hearing. The National Viral Hepatitis Roundtable ad is made to look like a movie poster and reads "Mission: Possible."


"If Congress gets on the case now," the ad says, "the leading cause of liver cancer won't stand a chance."


Patient advocates say the Honda bill will help boost funding for hepatitis prevention efforts, which currently only get 2 percent — $19.3 million — of the budget allocated to the Centers for Disease Control and Prevention's National Center for HIV/AIDS, Viral
Hepatitis, STD and TB Prevention. Advocates hope the Honda bill will eventually allow them to get $150 million a year.

Source:
http://thehill.com/blogs/healthwatch/prescription-drug-policy/103923-lawmakers-urge-quick-passage-of-bill-to-boost-detection-treatment-of-hepatitis

We will not be silent on viral hepatitis

By Rep. Mike Honda (D-Calif.) - 06/18/10 09:05 AM ET

At a Government and Oversight Reform Committee hearing this week, I testified to the devastating and deadly impacts of an unsuspecting disease: Viral Hepatitis. The fact that I was joined by Dr. Howard Koh, Assistant Secretary for Health, and Dr. John Ward, Director of the Viral Hepatitis Program at the Center for Disease Control, underscores the importance of the issue. Government oversight is a good start to getting the American public more informed, but much more is needed, according to the Institute of Medicine's 2010 report titled "Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C".

Few realize how highly infectious viral hepatitis is. Hepatitis B is 100 times more infectious than HIV. Few realize that, left untreated, it can cause liver disease, liver cancer, and premature death decades after infection. Few realize that roughly 2 billion people worldwide have been infected with Hepatitis B; over 170 million people are chronically infected with Hepatitis C; and in this nation alone, an estimated 5.3 million people are infected with either Hepatitis B or Hepatitis C. Tragically, an average of two-thirds of those infected are unaware of their status.

It is no surprise, then, that some are calling this a silent crisis. However, we cannot afford to be silent anymore. In fact, we will not be silent any more. Why? Because our countrymen and women are dying daily, needlessly, from a disease that is entirely preventable if detected early. Each year, approximately 15,000 people die from liver cancer or liver diseases related to Hepatitis B and Hepatitis C. That's over 40 Americans dying every day, with no state or district in our nation exempt from its deadly reach.

Beyond the tragic and preventable loss of human life and its subsequent hit to our country's productivity, the costs to our country our explicitly economic as well. Without effective prevention and vaccination methods in place, chronic Hepatitis B and C is expected to cost our country at least $20 billion, in treatments alone, over the next 10 years. As a result, over the same time frame, commercial and Medicare costs will more than double. Projecting further out, over the next 20 years, total medical costs for patients with Hepatitis C infection are expected to increase more than 2.5 times from $30 billion to over $85 billion.

We must, therefore, change the way Hepatitis is diagnosed and treated. With the help of Chairman Towns and Reps Cassidy, Johnson, and Dent, I introduced the Viral Hepatitis and Liver Cancer Control and Prevention Act, H.R. 3974, which provides nearly $600 million over the next five years to treat hepatitis. Our legislation focuses federal efforts on a strategy that saves lives and makes our health system more efficient. We bring together the common concerns of the diverse viral hepatitis community to fight chronic viral hepatitis by establishing, promoting, and supporting a comprehensive prevention, research and medical management referral program. And we strengthen the ability of the Center for Disease Control to support state health departments in the prevention, immunization and surveillance efforts.

Through this legislation, and with strategic investments in public health and prevention program, billions of dollars can be saved, so too the lives of tens of thousands of people in states and cities all over American. I urge all of you to join me in supporting activities that promote early detection and education. With your help, we can sound the alarm on this silent crisis.

Source:
http://thehill.com/blogs/congress-blog/healthcare/104081-we-will-not-be-silent-on-viral-hepatitis-rep-mike-honda

NVHR Launches Targeted Print Advertising Campaign Urging Swift Congressional Action on Secret Epidem

As Congress prepares to shine a spotlight this week on chronic viral hepatitis, the National Viral Hepatitis Roundtable (NVHR) today launched a new targeted print advertising campaign to urge swift action on bipartisan legislation providing federal funding for state-based screening and early intervention programs. NVHR's new advertising initiative comes in advance of a hearing Thursday, June 17, before the full House Oversight & Government Reform Committee, chaired by Chairman Ed Towns (D-NY) and Ranking Member Darrell Issa (R-Calif.). The Committee has invited testimony from a diverse panel of witnesses who will offer strategies for implementing expert recommendations made earlier this year by the Institute of Medicine (IOM).

NVHR is a coalition of more than 175 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. http://www.nvhr.org/

"NVHR's new advertising initiative is a timely reminder to Congress, the Administration, and all stakeholders that federal action is desperately needed this year to help combat this insidious disease that affects over 5 million Americans and their loved ones," said Ms. Lorren Sandt, Chair of the National Viral Hepatitis Roundtable (NVHR) and Executive Director of Caring Ambassadors Program, based in Portland, OR. "Six months ago, the Institute of Medicine issued nearly two-dozen expert recommendations for improving the federal government's response to the viral hepatitis epidemic. The pressing challenge now before Congress and the Administration is to provide federal funding to translate the IOM report into swift and decisive action."

Under the banner of "Mission: Possible," NVHR's new advertisement highlights the IOM report and urges action on HR 3974. The advertisement also features the tagline "If Congress gets on the case now, the leading cause of liver cancer won't stand a chance."

Thursday's hearing before the House Oversight & Government Reform Committee is an important step forward in this fight. 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 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.

HR 3974, "The Viral Hepatitis and Liver Cancer Control and Prevention Act," is sponsored by Representatives Mike Honda (D-Calif.), Charles Dent (R-Pa.) and 49 other House Members and would help turn the tide. 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.

Source: National Viral Hepatitis Roundtable

Source

Congress to Hold Hepatitis Hearing this Thursday

Action Alert

(posted June 16, 2010)

Hepatitis C Advocates UNITED! Action Alert

Congress to Hold Hepatitis Hearing this Thursday

Urge Your Representative to Lead the Fight Against the “Secret Epidemic”

Background

On Thursday, June 17, the House Committee on Oversight and Government Reform will hold a hearing entitled “Viral Hepatitis: The Secret Epidemic.” This hearing, under the leadership of Chairman Edolphus Towns, will examine issues surrounding the prevention, detection, management and control of viral hepatitis.

This hearing provides an excellent opportunity to educate Members of Congress about the hepatitis B and C epidemics and the recommendations made earlier this year on how the federal government must improve its response in the Institute of Medicine (IOM) report, Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C. The hearing also follows a major World Hepatitis Day rally at the U.S. Capitol nearly a month ago. There is growing momentum to demand that Congress fully fund hepatitis programs and take leadership on an issue that impacts millions of Americans.

Please take a few minutes to urge your House Representative to learn about the issues raised in this hearing and to fight for more viral hepatitis leadership!

Action

It is urgent that your calls be made immediately. Please call your Representative’s Washington, DC office. Ask to speak to the staff person who handles health issues. You can call your Representative at 202.225.3121. You will get the Capitol switchboard. Ask to be connected to your Representative’s office. If you don’t know who your Representative is, you can go online to http://www.house.gov/ to determine your Member of Congress. Whether you speak to this person directly or leave a message, tell them:

“My name is ___________ and I am a constituent of Representative ___________. I am calling to let you know about an important hearing this week on Thursday, June 17 at 10:00 AM held by the House Committee on Oversight and Government Reform entitled “Viral Hepatitis: The Secret Epidemic.” This hearing will focus on the federal government’s response to viral hepatitis; an epidemic that affects over 5 million Americans, most of whom do not know they are infected because they have no symptoms. Viral hepatitis such as hepatitis B and C are the leading causes of liver cancer and cause 15,000 premature deaths each year.

I urge Representative ___________ to support this hearing and to do everything he/she can to fight this silent epidemic, including fighting for increased funding for viral hepatitis programs at the Centers for Disease Control and Prevention, supporting in any way possible new health reform monies to hepatitis services and co-sponsoring the Viral Hepatitis and Liver Cancer Control and Prevention Act (H.R. 3974). This is important to me because _________________.”

It is especially important to encourage your Representative attend the hearing if he or she is on the House Committee on Oversight and Government Reform (see membership list below). Urge him/her to attend this important hearing to show leadership!

Committee Members:

Democrats:
Chairman Edolphus Towns (NY)

Paul Kanjorski (PA)

Carolyn Maloney (NY)

Elijah Cummings (MD)

Dennis Kucinich (OH)

John Tierney (MA)

William Lacy Clay (MO)

Diane Watson (CA)

Stephen Lynch (MA)

Jim Cooper (TN)

Gerald Connolly (VA)

Mike Quigley (IL)

Marcy Kaptur (OH)

Eleanor Holmes Norton (DC)

Patrick Kennedy (RI)

Danny Davis (IL)

Chris Van Hollen (MD)

Henry Cuellar (TX)

Paul Hodes (NH)

Christopher Murphy (CT)

Peter Welch (VT)

Bill Foster (IL)

Jackie Speier (CA)

Steve Driehaus (OH)

Judy Chu (CA)



Republicans:

Ranking Member Darrell Issa (CA)

Dan Burton (IN)

John Mica (FL)

John Duncan, Jr. (TN)

Michael Turner (OH)

Lynn Westmoreland (GA)

Patrick McHenry (NC)

Brian Bilbray (CA)

Jim Jordan (OH)

Jeff Flake (AZ)

Jeff Fortenberry (NE)

Jason Chaffetz (UT)

Aaron Schock (IL)

Blaine Luetkemeyer (MO)

Anh “Joseph” Cao (LA)


Hepatitis C Advocates UNITED! is a national, grassroots network of individuals and organizations fighting for increased funding for hepatitis programs and legislation to mount a comprehensive federal effort to fight the disease. We design grassroots strategies to educate our elected representatives about the need for adequate HCV funding and policies, including action alerts, sign-on letters legislative meetings, media activities, and other campaigns. We also share information and strategies on state-level issues and campaigns. Hepatitis C Advocates UNITED! was formed by the Hepatitis Appropriations Partnership (HAP) and the National Hepatitis C Advocacy Council (NHCAC), and the National Viral Hepatitis Roundtable (NVHR). To join the network, send an email to rclary@projectinform.org with “subscribe” in the subject field. Please include your name and city/state in the email.

Source