May is Hepatitis Awareness Month! kNOw more hepatitis.

May is Hepatitis Awareness Month. Let’s pull together and save some lives in Tallahassee by educating each other about hepatitis. “kNOw more hepatitis” is the CDC’s logo for hepatitis awareness. Everyone should be vaccinated for hepati…tis A and B and most should be tested for hepatitis C. 1 in 12 people in the world have some form of hepatitis.

In the U.S., it is estimated that almost 4 million people have hepatitis C with less than a million being diagnosed. That is 4 times more prevalent than HIV! There is not a vaccine for hepatitis C. It is spread by blood to blood transmission but that can happen in ways that many people haven’t thought about. Hepatitis C can live in the air for up to 4 days. It was still in the blood supply until 1992. There have been outbreaks at hospitals, cancer clinics, pain clinics, endoscopy clinics, dental offices, dialysis centers, tattoo parlors, barber and beauty shops. Anyplace a blood to blood transmission could occur. While IV or intranasal drug use (even once 40 years ago) is an efficient way to spread hepatitis C, it is not the only way! Last year the CDC recommended that all Baby Boomers (those born between 1945-1965) have a one time hepatitis C test. They feel that would find almost 800,000 undiagnosed people and save 120,000 lives. All forms of hepatitis attack the liver. The liver is a non-complaining organ so most people do not have any symptoms until the late stages of the disease and that can lead to liver cancer, liver transplant or liver failure. Hepatitis C is the leading cause of liver cancer and liver transplants. There are treatments currently available with almost an 80% success rate and more treatments are in clinical trials that will improve treatment in the future. Please don’t take your status for granted. It is a simple blood test that you can ask your doctor to add to your next set of lab work.

For more information visit www.cdc.gov/knowmorehepatitis and for questions and support in Tallahassee visit www.HEALSoftheSouth.org There is a monthly meeting that is free and open to the public listed on that site.

If you are a Baby Boomer, please ask your doctor to test you for hepatitis C. You might just save your own life or the life of a friend or relative. Share the information and learn the facts.

Sincerely,
Pam, Miriam, and Jeanette, R.N.
H.E.A.L.S of the South
Hepatitis Education, Awareness and Liver Support
850-443-8029

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Hepatitis C Action Alert!

Action Alert:
Urge Members to Include Viral Hepatitis Funding in Programmatic Requests

With the passage of the continuing resolution (CR) for FY2013 at the
FY2012 levels (before the sequester) and no Prevention and Public Health Fund allocations, we do not know the total, final funding level for FY2013 at the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) or the future of the $10 million they received in FY2012 for a testing initiative. The President’s FY2014 budget has not yet been released. We need your help in raising awareness among Members of Congress about the viral hepatitis epidemics and asking their support for increased funding for viral hepatitis activities at the federal level. Viral hepatitis advocates are urging for a total funding at the Division of Viral Hepatitis of $35 million, an increase of $5.3 above the total FY2012 level.

In the next week and a half, all Senators and Representatives will write their “programmatic appropriations request letters,” which ask members of the Appropriations Subcommittees (who put together the federal funding legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2014.

As you know, viral hepatitis impacts over 5.3 million people nationwide. With a lack of a comprehensive surveillance system, these estimates are likely only the tip of the iceberg and 75% of those infected do not know their status. Even with these daunting figures, there are only $19.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC in the CR for FY2013, before sequester. Members of Congress need to know that viral hepatitis is a concern in their district, that their constituents are being affected and that this is an issue they need to care about. We need you to tell your story and ask your elected representatives to take action by April 12.

Additionally, the CDC released FY2012 Grant Funding Profiles by state, here http://wwwn.cdc.gov/FundingProfiles/FundingProfilesRIA
When you click on your state and “Generate Report,” your state’s viral hepatitis funding is included in the report.

Step-by-step instructions on what to do are below:

1. Determine what Members of Congress to contact. You should contact your personal Member of the House of Representatives and two Senators. You should also contact other House Members in areas where your organization is located or provides services. To determine who your Representative is please go to www.house.gov and type in your zip code(s); to determine who your Senators are go to www.senate.gov and select your state from the drop down menu.

2. Call the Members’ Offices to get the name and correct spelling of their health staff person. Email the staff using the draft email text below. House staff emails are First.Last@mail.house.gov
john.smith@mail.house.gov
Senate staff emails are
First_Last@Last name of Senator.Senate.gov
john_smith@doe.senate.gov

Sample email:

Your Name
State and Zip code

Dear (Name of Health Staffer):

My name is ____________ and I live in City/State. I am writing to urge Representative/Senator________________ to include funding for viral hepatitis in his/her Fiscal Year 2012 programmatic appropriations request letter. [Include brief details on the impact of viral hepatitis on yourself or describe your organization].

There are over 5.3 million Americans impacted by viral hepatitis but, in FY2012, the only dedicated federal funding stream provided a mere $29.7 million through CDC. This is insufficient to provide the most basic public health services such as education, counseling, testing, or medical management for people living with or at risk of viral hepatitis.

I urge Representative/Senator ___________ to support a total funding level of $35 million for the Division of Viral Hepatitis in FY2014 to effectively combat these epidemics. I will be following up with you in the near future to discuss this request. In the meantime, feel free to contact me with questions.

Thank you again for consideration of my request.

Your Name

3. Follow-up with the staff you have emailed with a phone call to confirm they received the request and to determine when they may have an answer from their bosses as to whether or not they will include a hepatitis funding request in their Appropriation programmatic request letter. If asked, make it clear to the staff that this is a program request and NOT a project request (i.e. money for a district specific project like a bridge, hospital or university). You may need to follow-up again around the time the staff says they will have an answer from their chain of command.

4. If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or omairena@NASTAD.org If the staff member requests “report language” or “program language,” please contact Oscar and he will provide that for you. Please also share positive responses with the Hepatitis Appropriations Partnership by contacting Oscar.

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EIU report highlights low awareness of hepatitis C

EIU report highlights low awareness of hepatitis C

World News | January 18, 2013
Kevin Grogan

A report by the Economist Intelligence Unit warns that hepatitis C has become a “silent pandemic” which kills 350,000 people each year.

The report, funded by Johnson & Johnson’s Janssen unit, speaks of the “urgent need for countries around the world to develop strategies to tackle head-on the growing social and economic issues associated with HCV”. While the total number of infected individuals is unknown due to a lack of available data, the World Health Organisation estimates that 150 million people globally are currently living with the blood-borne infectious disease and up to two-thirds will develop chronic liver disease.

One in five will develop cirrhosis and HCV is also the leading cause of liver transplantation worldwide – in the USA, the disease now accounts for more deaths than HIV. The report states that it is now considered preventable and with modern treatments, the majority of suffers can become clear of the virus but as few as 10% of patients are currently receiving treatments “and there is a large disparity in care across countries”.

The EIU team calls for “effective disease surveillance to create an accurate picture of the problem and ensure effective policies can be developed. They state that too few countries – developed or developing – “have recently conducted the epidemiological studies necessary for good policy-making at a national, let alone a local, level”. Some 16 countries in the European Union alone have data “that is either poor or non-existent”.

The report’s authors also call for better public awareness “to help remove the stigma associated with the disease”. The authors cite a survey by the European Liver Patients Association which found that only 20% of those diagnosed had heard of hepatitis B or C before being told they had it.

Commenting on the report, Charles Gore, president of the World Hepatitis Alliance, said it shows that “despite the significant burden of HCV, governments have failed to get a grip on the scale and impact of the disease”. He added that “the true human and economic cost of HCV will continue to rise unless policymakers confront this urgent public health issue now”.

Links
www.janssen-emea.com

http://www.pharmatimes.com/Article/13-01-18/EIU_report_highlights_low_awareness_of_hepatitis_C.aspx

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Action Alert!!

Action Alert

Your Calls Are Needed Now! Deadline: Friday, January 4, 2013

Last Chance to Urge Your House Representative to Sign Bi-Partisan Letter

Calling on USPSTF to Change Its Hepatitis C Recommendation

Updated – January 3, 2013

Representatives Bill Cassidy (R-LA), Michael Honda (D-CA), Hank Johnson (D-GA), and Barbara Lee (D-CA) are taking a leadership role in responding to the U.S. Preventive Services Task Force’s disappointing draft “C” recommendation for testing Baby Boomers for hepatitis C. They are circulating a sign-on letter among their colleagues that urges the USPSTF to change the grade to an “A” or a “B” when it finalizes its recommendations (see letter below).

As of January 3, 2013, the following Members of Congress in addition to the authors have signed the letter: Michael Burgess (R-TX), Judy Chu (D-CA), John Conyers, Jr. (D-MI), Zoe Lofgren (D-CA), Charles Rangel (D-NY), Jackie Speier (D-CA), and Maxine Waters (D-CA). We need many more Members to sign this letter!

This letter is an extremely important tool in convincing the USPSTF to improve its grade. Please take a few minutes to call your Representative and ask him/her to sign! If your Representative has already signed, please call and thank him/her.

How you can help:

Please call your House Representative’s Washington, DC office as soon as possible, and before January 4, 2013 (the deadline for signing the letter).

Ask to speak with the staffperson who handles health care issues. Whether you leave a voicemail or speak with the staffperson live, tell him/her:

“My name is ____________ and I live in (city). I am calling to urge Representative _____________ to sign the bi-partisan letter by Representatives Cassidy, Honda, Johnson, and Lee that urges the U.S. Preventive Services Task Force to improve its recommended “C” grade for hepatitis C testing. We need a stronger USPSTF recommendation in order to identify the millions of Americans who have hepatitis C and don’t know it. If you have questions about the letter, or wish to sign, please contact A.J. Bhadelia in Representative Honda’s office, Scott Goldstein in Representative Johnson’s office, or Robb Walton in Representative Cassidy’s office.”

You can reach your House Representative through the Capitol Switchboard, (202) 224-3121.

Thank you for taking the time to make a difference!

For more information, contact info@nvhr.org

Bi-Partisan Call to USPSTF to Change its Hepatitis C Recommendation
Join the Bi-Partisan Call to USPSTF to Change its Hepatitis C Recommendation
Deadline: 1/4/13

Dear Colleague,

Please join us in writing a bi-partisan letter to the U.S. Preventative Services Taskforce (USPSTF) encouraging them to change their recommended “C” grade for hepatitis C (HCV) screening among baby boomers. As you may know, earlier this year, the Centers for Disease Control and Prevention (CDC) released new HCV screening guidelines recommending that providers offer the screening to anyone born in this birth cohort. The recommended grade of a “C” from the USPSTF falls disconcertingly short of meaningfully implementing the CDC’s recommendation. The USPSTF states that there is only a “small benefit” for testing those who do not have symptoms, despite the fact that HCV can remain asymptomatic for years.

CDC took an important first step in changing the testing paradigm around HCV for the better and improving health outcomes for millions of Americans. CDC’s guidelines are based on a systematic review of a comprehensive body of evidence, evidence such as age-based methods that we encourage the USPSTF to use to align itself more closely with the CDC’s recommendations. Of additional concern is the fact that the USPSTF does not have a consistent public definition for the “C” grade. While a “C” recommendation appears to put the decision to screen in the hands of the individual physician, the USPSTF notes that the “C” statement is “undergoing revision.” This could create a significant level of confusion as physicians determine how to incorporate the recommendation into practice.

It is critical we prioritize the identification of HCV-infected baby boomers in order to meet the goals of the Department of Health and Human Services’ Viral Hepatitis Action Plan. Of the estimated 3.2 million persons living with HCV, 45 to 85 percent remain unaware of their infection and are not linked to the life-saving care and treatment that are needed to avoid progression to liver disease, cirrhosis or liver cancer. Persons born between 1945 and1965 have the greatest risk for HCV related morbidity and mortality, and therefore, would see the greatest benefit from HCV screening.

We hope you will consider joining us for this important letter. If you have any questions or would like to sign on, please contact A.J. Bhadelia with Rep. Mike Honda’s office (aj@mail.house.gov), Scott Goldstein with Rep. Johnson’s office (scott.goldstein@mail.house.gov) or Robb Walton with Rep. Cassidy’s office (robb.walton@mail.house.gov).

Sincerely,

Michael Honda Hank Johnson
Member of Congress Member of Congress

Bill Cassidy M.D. Barbara Lee
Member of Congress Member of Congress

————————

December ____, 2012

Virginia Moyer, MD, MPH
Chair
U.S. Preventive Services Task Force
540 Gaither Road
Rockville, MD 20850

Dear Dr. Moyer,

We write to you on behalf of the more than 5.3 million people living with viral hepatitis in the United States, a large portion of whom remain unaware of their infection, to encourage you to change your recommended “C” grade for hepatitis C (HCV) screening among baby boomers. While we applaud the Task Force for the “B” grade recommendation for HCV testing of persons who inject drugs (PWID) and other persons with identified risks for infection as a step forward, we fear that a “C” grade recommendation for baby boomers will fail to identify a large portion of HCV-infected individuals.

We appreciate the work that the United States Preventative Services Task Force (USPSTF) does and understand the systematic review of many comprehensive bodies of evidence; however, it is critical that we prioritize the identification of HCV-infected baby boomers in order to meet the goals of the Department of Health and Human Services’ Viral Hepatitis Action Plan. Of the estimated 3.2 million persons living with HCV, 45 to 85 percent remain unaware of their infection and are not linked to the life-saving care and treatment that are needed to avoid progression to liver disease, cirrhosis or liver cancer. Persons born between 1945 and1965 have the greatest risk for HCV related morbidity and mortality, and therefore, would see the greatest benefit from HCV screening.

As you know, earlier this year, the Centers for Disease Control and Prevention (CDC) released new HCV screening guidelines recommending that providers offer the screening to anyone born in this birth cohort. The recommended grade of a “C” falls disconcertingly short of meaningfully implementing the CDC’s recommendation. The USPSTF states that there is only a “small benefit” for testing those who do not have symptoms, despite the fact that HCV can remain asymptomatic for years.

Of additional concern is the fact that the USPSTF does not have a consistent public definition for the “C” grade. While a “C” recommendation appears to put the decision to screen in the hands of the individual physician, the USPSTF notes that the “C” statement is “undergoing revision.” This could create a significant level of confusion as physicians determine how to incorporate the recommendation into practice.

CDC took an important first step in changing the testing paradigm around HCV for the better and improving health outcomes for millions of Americans. CDC’s guidelines are based on a systematic review of a comprehensive body of evidence, evidence that we encourage the USPSTF to use to align itself more closely with the CDC’s recommendations. Make no mistake, failure to change this recommended grade will affect millions of Americans who will not be screened by their providers because there is no reimbursement mechanism for C grade recommendations.

The USPSTF took a major step forward by endorsing risk-based screening for people with histories of injection drug use, the leading cause of new infections today. However, history shows that risk-based screening recommendations, while perhaps theoretically most cost effective, are not most effective in practice. For example, the early recommendations for hepatitis B viral (HBV) immunization for neonates were originally risk-based for infants born to known HBV carriers, offspring of Asian and Pacific Islanders, or of mothers with known risk factors. This recommendation was so poorly followed that it was changed to universal neonatal immunization. After this is when HBV prevalence began to fall.

Another reason to support an age-based cohort recommendation, as opposed to a risk-based recommendation, is that a significant percent of hepatitis C infected patients do not know or else deny risk factors for hepatitis C. Yet another reason is that primary care physicians do not routinely inquire as to if a patient has a history of intravenous drug use. In any of these cases, the decision to test is not triggered. An age-based cohort recommendation addresses these issues. We are aware that USPTF uses literature based review in their assigning of a grade. We ask that the literature related to the greater effectiveness of age-based methods be utilized as well. Although a risk based recommendation is clearly the more intellectually elegant and theoretically cost effective, the reality is that it is only effective for those in whom risk is adequately ascertained, resulting in an extremely narrow impact.

An A or B grade recommendation can have a substantial impact on expanding screening access to millions of people living with HCV who do not know their status, bringing more people into care and treatment and decreasing new HCV infections. It will also have implications for insurance coverage of HCV testing, as USPSTF grades guide reimbursement requirements for private insurers, Medicare, and Medicaid. This is especially important given that development of new therapies for HCV is advancing rapidly. Data recently presented at the annual American Association for the Study of Liver Diseases meeting suggests that highly effective, safe, short acting and all-oral treatment regimens can be expected within the next 12 to 18 months. These advances will reduce the harms of HCV, while increasing the benefits of testing, care, and treatment.

With the HCV treatment pipeline changing, new therapies achieving successful results, revised and expanded CDC guidelines, and the HHS Viral Hepatitis Action Plan that focuses on identification of people living with viral hepatitis, it is imperative that USPSTF recommendations are congruent with federal priorities and current medical knowledge. We thank you for your time and look forward to working with you in the future. If you have any questions, please contact A.J. Bhadelia with Rep. Mike Honda’s office (aj@mail.house.gov), Scott Goldstein with Rep. Johnson’s office (scott.goldstein@mail.house.gov) or Robb Walton with Rep. Cassidy’s office (robb.walton@mail.house.gov).

Sincerely,

Michael Honda Hank Johnson
Member of Congress Member of Congress

Bill Cassidy M.D. Barbara Lee
Member of Congress Member of Congress

CC: The Honorable Kathleen Sebelius
CC: Dr. Thomas Frieden
CC: Dr. Kevin Fenton
CC: Dr Ron Valdisseri
CC: Dr. Howard Koh
CC: Dr. John Ward
CC: Dr. Carolyn Clancy

NVHR
P.O. Box 1662
Rohnert Park, CA 94928
United States

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U.S. Preventive Services Task Force sign on letter – use as a template too!

Many community organizations around the country have asked to be part of a sign-on letter to the U.S. Preventive Services Task Force in response to its draft of hepatitis C testing recommendations. NVHR encourages organizations to sign the letter below asking the USPSTF to change its “C” grade of testing Baby Boomers to a “B.” The letter will be submitted as public comment at 5 pm Pacific time, Friday, December 21st.

Please note that it is extremely important that we flood the USPSTF with separate public comment letters. So, in addition to signing this letter, please submit your own comments – as individuals and as organizations. There will be other sign-on letters circulating in the next few days and all are worthy of signatures, but please make sure you submit your own comments as well. Over 100,000 lives are at stake.

To sign the letter below, email the following information to rclary@nvhr.org .

Deadline: 5 pm Pacific, Thursday, December 20th.

Name of organization
City, state
Contact person

Sign-on letter:

Virginia Moyer, MD, MPH
Chair
U.S. Preventive Services Task Force
540 Gaither Road
Rockville, MD 20850

Dear Dr. Moyer,

The undersigned organizations strongly urge you to change your recommended “C” grade for hepatitis C testing of those born between 1945 – 1965 (“baby boomers”) to a “B” grade.

We appreciate and support your “B” grade recommendation for hepatitis C testing of adults at high risk, including those with a history of injection drug use and those who received a blood transfusion prior to 1992. This recommendation is a significant step forward in recognizing the need for those individuals to be tested for hepatitis C, and linked to care if testing positive.

However, we are deeply disappointed in your “C” grade for testing those born between 1945 and 1965 for hepatitis C. This recommendation fails to match the Centers for Disease Control and Prevention’s lifesaving recommendation that everyone in this birth cohort receive a one-time hepatitis C test. Baby boomers represent 75% of the more than 4 million cases of hepatitis C in this country. The overwhelming majority do not know their status. The CDC accurately recognized that the best way to identify these individuals, so that they can benefit from care and treatment before developing late stage liver disease, is to ensure that they have an opportunity to be tested regardless of risk assessment. Testing everyone in this age range removes stigma associated with the test, thus reducing barriers on the provider and the patient end. According to the CDC, this one time test would result in identifying over 800,000 cases and avoiding up to 121,000 deaths.

As you know, many medical providers rely heavily on your guidelines, and many insurers use your guidelines when determining what services to cover. A “C” recommendation will result in many people not being tested during routine medical visits and misses a tremendous opportunity to save lives. Your draft recommendation conflicts with the federal government’s stated commitment to mount a real fight against the hepatitis C epidemic. You have acknowledged a benefit of testing baby boomers for hepatitis C, and we urge you to change your grade to a “B” to make sure this benefit is realized.

Sincerely,

Ryan Clary
Director of Public Policy and Programs
National Viral Hepatitis Roundtable
rclary@nvhr.org
415-235-8593
www.nvhr.org

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WRESTLING THE MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY

This is an excellent video and a good reminder why those of us on Lactulose and/or Rifaximin cannot skip any doses.

WRESTLING THE MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY

Why Hepatic Encephalopathy (HE)?
Each year, hundreds of thousands of cirrhotic patients are affected by hepatic encephalopathy. In addition to the toll the condition takes on these patients, it impacts their family and friends, who are burdened with a disease that affects many aspects of their lives. Despite the seriousness of the condition, many patients are not receiving the treatment and support they need. This film was created to tell the stories of a patient population that is often without the advocates and support it so desperately needs. Director Cynthia Wade focuses on telling stories that might otherwise not be heard.

WRESTLING THE MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY follows 4 patients suffering from hepatic encephalopathy. A matriarch and military veteran in northern California now finds herself housebound. In New Jersey, a beloved wife and mother saved by a transplant still struggles with lasting effects. A father in rural Oklahoma flounders with a condition he can’t comprehend. And a formerly high-functioning mother in Florida finds herself isolated and a shell of who she once was.

What will HE destroy next for these patients?

http://www.hesback.com/

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U.S. Preventive Services Task Force Fails Baby Boomers at Risk for Hepatitis C

U.S. Preventive Services Task Force Fails Baby Boomers at Risk for Hepatitis C

 November 26, 2012: The U.S. Preventive Services Task Force (USPSTF) released a draft of its updated hepatitis C screening guidelines today. The draft recommendations for hepatitis C testing among injection drug users and others at high risk grade “B”, meaning testing is recommended, is an improvement over previous guidelines; However, the Task Force failed to match the Centers for Disease Control and Prevention’s (CDC) lifesaving recommendation for people born from 1945 to 1965 to receive a one-time test for hepatitis C. For “Baby Boomers,” who represent 75% of the more than 4 million cases of hepatitis C in this country, the Task Force is recommending only a “C” grade; stating that there is only “small benefit” for testing this group. Martha Saly, the Executive Director of the National Viral Hepatitis Roundtable, a baby boomer who was tested, treated and cured of hepatitis C, strongly disagrees. “Doctors look to USPSTF to guide clinical practice and A and B recommendations get covered without cost-sharing to patients. This is not going to be the case with a C recommendation and will result in many people not being tested.” said Saly, “We’ll miss a tremendous opportunity to save lives.” According to the CDC, if everyone born between 1945 and 1965 was tested, over 800,000 cases would be identified, and up to 121,000 deaths could be avoided.

The vast majority of people with hepatitis C do not know they have it and are at greatly increased risk for advanced liver disease, liver cancer, and death. “The USPSTF took a major step forward in endorsing risk-based screening for people with histories of injection drug use, the leading cause of new infections today.” said Daniel Raymond, the Chair of the National Viral Hepatitis Roundtable, “However the stigma which discourages patients from disclosing past risks will leave an unacceptably high number of people at risk for liver disease undiagnosed unless the USPSTF strengthens its Baby Boomer recommendation.”

Often called the “silent epidemic, the number of deaths from HCV will grow in the coming years, especially among people who have been unknowingly infected for thirty to forty years. According to the CDC, if the people who are currently infected with HCV do not receive care, 1.76 million will develop cirrhosis, approximately 400,000 will develop liver cancer, and approximately 1 million will die of related complications between the mid 2020s and mid 2030s. Hepatitis C treatments are improving rapidly, promising more effective drugs and shorter treatment regimens. In light of these positive improvements in treatment, NVHR calls on the USPSTF to take CDC’s lead and remove barriers around testing to ensure that those who are most likely to have hepatitis C are given a chance to know their status, be linked to care and benefit from treatment. Without this step, the “silent epidemic” will rage on.

About NVHR

The National Viral Hepatitis Roundtable (NVHR) is a coalition of more than 200 public, private and voluntary organizations dedicated to reducing the incidence of infection, morbidity and mortality from viral hepatitis in the United States.

www.nvhr.org

Martha Saly
Director
National Viral Hepatitis RoundtableP.O. Box 1662
Rohnert Park, CA 94928
United States

Phone: 707-242-3333
www.nvhr.org