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

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

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

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/

NVHR/NASTAD meeting in DC October 2011~

This is where I was last week. A wonderful HCV conference where Natalie Cole was the guest speaker. Yes that is me doing the intro :-)

I misspoke and should have said my hemoglobin went from almost 17 to 6, not 7 to 6 but oh well! LOL

Check out the link and hear what Natalie has to say about her journey and please feel free to pass forward. http://youtu.be/Ql-Fb3Vc-co You might have to copy and paste into your browser

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Copy and paste the link into your browser to see the picture[s]:
http://2011dchepatitismeeting.shutterfly.com/pictures/252

GET TESTED for Hepatitis C! Important for Everyone from Transplant Recipients to Licensed Practical Nurses!

GET TESTED for Hepatitis C!

About me: (from www.myspace.com/figmento )

I was diagnosed with Hepatitis C in June 1997 in Glenwood Springs, Colorado and since that time I have turned my life over to educating and advocating wherever I can for Hepatitis C. I do have cirrhosis.

You should be tested for Hepatitis C if you:

*Received blood, blood products, or an organ transplant prior to 1992
*Ever shared drug paraphernalia
*Ever been stuck by a used blood needle
*Had a tattoo or body piercing
*Been on kidney dialysis
*Had sexual activity that involved contact with blood
*Had a vaccination with a pneumatic jet gun injector (Military)
*Shared personal care items with other people (razors, toothbrushes, nail clippers, etc.)
*Work as a first responder (EMT, fireman, policeman, etc.) or in the health care field (Doctor,PA, RN, LPN, etc)

Hepatitis C patients outnumber HIV patients FIVE TO ONE! 1 in 12 in the world have some form of hepatitis! Visit http://www.aminumber12.org/ for more information.


While living in Woodstock, GA several years ago, I became actively involved in a nonprofit called H.E.A.L.S of North Georgia (Hepatitis Education Awareness and Liver Support) and when I moved to Florida we changed the name to H.E.A.L.S of the South. We have websites at http://www.healsofthesouth.org/ and http://www.healsofthesouth.com/

Stop by and visit!

Also you can join http://groups.yahoo.com/group/HepCingles2 and ASK QUESTIONS and receive support!

Mahatma Gandhi put it well: "Be the change you want to see in the world." It always begins with one person.

Tell 12 of your friends to get Tested for Hep C and vaccinated for Hep A and Hep B and tell them to tell 12 friends.   Let's educate the WORLD!

World Hepatitis Day July 28, 2011

White House: World Hepatitis Day Briefing, July 28,2011
Click to watch............

http://www.youtube.com/watch?v=57GqP85CURE&feature=youtu.be


http://www.youtube.com/watch?v=R1gz5gxKwhM&feature=youtu.be
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President Obama proclaims July 28, 2011, as World Hepatitis Day

http://nvhr.org/content/president-obama-proclaims-july-28-2011-world-hepatitis-day


Then click on the PDF
2011_hepatitis_prc_rel.pdf

FDA OKs Telaprevir for Hep C

FDA OKs Telaprevir for Hep C

WASHINGTON -- The FDA has approved telaprevir (Incivek) for treatment of hepatitis C genotype 1, making it the second new protease inhibitor to win agency approval for the condition this month.

Hepatitis C affects some three to four million people in the U.S.; about two-thirds have genotype 1.

The approval was all but certain after an FDA advisory committee unanimously endorsed telaprevir, made by Vertex Pharmaceuticals, in April. On May 13, the agency announced it is approving Merck's boceprevir (Victrelis).

Telaprevir and boceprevir work by targeting the virus directly; the current standard treatment regimen of pegylated interferon and ribavirin works instead by boosting patients' immune responses.

Both telaprevir and boceprevir are indicated as add-on treatment to pegylated interferon and ribavirin.

Telaprevir comes in pill form and is taken three times a day for 12 weeks, with peginterferon and ribavirin at standard doses for 24 or 48 weeks, depending on virologic response.

Adding a protease inhibitor to peginterferon and ribavirin is expected to become the new standard of care for HCV genotype 1 patients.

About half of patients treated with the standard peginterferon and ribavirin combo achieve sustained viral responses. The telaprevir trials indicated that adding the protease inhibitor could boost the sustained response rate above 70%, to as much as 90%, in patients who had never been treated for HCV, according to results from one study.

"With the approval of Incivek, there are now two important new treatment options for hepatitis C that offer a greater chance at a cure for some patients with this serious condition," said Edward Cox, MD, MPH, director of the FDA's Office of Antimicrobial Products.

"The availability of new therapies that significantly increase responses while potentially decreasing the overall duration of treatment is a major step forward in the battle against chronic hepatitis C infection," Cox said.

The FDA advisory panel that reviewed telaprevir was extremely confident that the drug works but was concerned about an increased incidence of serious and life-threatening skin reactions, including three cases of Stevens-Johnson syndrome in patients who took telaprevir.

More than half of patients receiving the drug reported rash or pruritus, with 6% discontinuing treatment as a result. These rates were about double those in the control groups.

Vertex assured the panel that those side effects are generally manageable and resolve after the drug is stopped.

http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/26638
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Telaprevir Patient Assistance Program

Helping People with Hepatitis C Get INCIVEK

The people who work at Vertex understand that medicines can only help patients who can get them. With that in mind, the company today introduced a comprehensive financial assistance and patient support program to help people get INCIVEK who might not otherwise be able to afford it. The program will help people with hepatitis C learn about insurance benefits for their medicines, give INCIVEK for free to eligible patients who do not have insurance and provide coverage for co-pay or co-insurance costs associated with INCIVEK for people who meet certain program criteria.

Additionally, patients will have access to nurses through a 24-7 hotline by which they can receive support, guidance and educational materials about hepatitis C and its treatment. Vertex will also provide nurses and doctors with educational tools and resources so they can offer support and care to people with hepatitis C before, during and after the treatment process.

For eligible patients, the program includes the following:

Insurance Benefits Research and Support: Vertex case managers will research patients' insurance benefits for INCIVEK combination treatment, assist people with insurance appeals and help guide them to other forms of financial support, including Vertex's free medicine and co-pay programs;
Free Medicine Program: Vertex will give INCIVEK for free to people who do not have insurance and have an annual household income of $100,000 or less; and
Co-Pay Support: Vertex will cover co-pay or co-insurance costs up to 20 percent of the total cost of INCIVEK for people who have private insurance plans that cover INCIVEK, regardless of their household income. For people covered by government insurance, Vertex will also make donations to the independent, non-profit Patient Access Network Foundation, which has a fund to provide co-pay support to people taking hepatitis C medicines.

More information about this program is available by calling 1-855-837-8394 or visiting www.INCIVEK.com

May 12th Webinar for the Viral Hepatitis Action Plan!!!!

Each May, the Centers for Disease Control and Prevention (CDC) and its U.S. public health partners observe Hepatitis Awareness Month. Viral hepatitis affects an estimated 4.4 million people in the United States. To further increase awareness and improve the health outcomes of Americans, Health and Human Services Assistant Secretary for Health, Dr. Howard K. Koh, will release the report, Combating the Silent Epidemic: the U.S. Department of Health and Human Services Action Plan for the Prevention and Treatment of Viral Hepatitis on Thursday, May 12, from 1:00 to 2:00 p.m. ET, at the National Press Club in Washington, DC. The press club event will be webcast live at: http://www.visualwebcaster.com/hepatitisplan

This Viral Hepatitis Action Plan—which was developed by an interagency working group in collaboration with professional societies, community-based organizations, and other members of the public—was created to address gaps in current viral hepatitis efforts as identified by the Institute of Medicine in its 2010 report on viral hepatitis and liver cancer. To facilitate significant progress in preventing and controlling viral hepatitis, the Viral Hepatitis Action Plan outlines specific goals, strategies, and actions to be undertaken by designated HHS agencies within a defined period of time. Partners also will continue to be engaged as the plan is implemented.

Successfully combating the silent epidemic of viral hepatitis will require collective action. CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) works to integrate prevention opportunities, as persons at risk of acquiring hepatitis are often at risk of acquiring other NCHHSTP focus diseases. This type of collaboration is particularly important for viral hepatitis prevention; several of the populations hardest hit by viral hepatitis are also disproportionately affected by HIV—presenting multiple opportunities for integrating proven interventions. Together, we can take critical, concrete steps towards preventing viral hepatitis infections and improving the health of millions of infected Americans.

To learn more about the Viral Hepatitis Action Plan or Hepatitis Awareness Month, visit the Viral Hepatitis Web site and follow CDC's viral hepatitis Twitter account @CDChep.

Hepatitis C - The Basics

Hepatitis C - The Basics


New Video from Vertex
http://www.youtube.com/profile?user=hepctv

New website from Vertex
http://www.bettertoknowc.com/

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment

Quadruple therapy shows 100 percent SVR for HCV patients previously unresponsive to treatment


Is this treatment approach the next HCV therapy frontier?

Berlin, Germany, Saturday 02 April 2011: Exciting new data presented today at the International Liver CongressTM 2011 show that quadruple therapy in chronic hepatitis C (HCV) patients suppressed the emergence of resistant variants and resulted in a 100% rate of sustained virological response - undetectable HCV RNA - 12 weeks after treatment (SVR12).1

In the quadruple therapy study, HCV patients were given four drugs in combination; pegylated Interferon-alpha (PegIFN-alpha); ribavirin (RBV); and two different direct-acting antivirals (DAAs) BMS-650032 (an HCV NS3 protease inhibitor) and BMS-790052 (an HCV NS5A replication complex inhibitor).

The current standard of care (SoC) for HCV therapy is PegIFN-alpha plus RBV – a dual therapy. The addition of DAAs (currently in phase-III clinical trials) marks the next step in treatment evolution – a triple therapy. However, the new data presented today suggests that quadruple therapy could be the next generation of treatment for chronic HCV patients.

Professor Heiner Wedemeyer, EASL'S Secretary General, said: "Quadruple therapy is possibly the future of HCV treatment; this study goes a way to confirming that. While it's expected that the first DAAs and triple therapy will be approved for use later this year, quadruple therapy appears to have a more profound effect on virological response, with less of a resistance problem."

The study may also provide new hope for a growing number of HCV patients who cannot be effectively treated for chronic hepatitis with current treatments.

The Phase-IIa trial looked at a cohort of 21 HCV genotype 1 null responders (patients who have failed to respond to previous treatment), of whom 19 had an unfavourable IL28B genotype, which predisposes HCV patients to treatment failure.

Only about 30% of null responders to PegIFN-alpha/RBV treatment achieve sustained virological response (SVR) when retreated with PegIFN-alpha/RBV plus telaprevir, demonstrating a high unmet medical need.1


References
1. Lok A et al. Quadruple therapy with BMS-790052, BMS-650032 and peg-IFNRBV for 24 weeks results in 100% SVR12 in HCV genotype 1 null responders. Abstract presented at The International Liver CongressTM 2011. http://www1.easl.eu/easl2011/program/Orals/418.htm



http://hcvadvocate.blogspot.com/2011/04/quadruple-therapy-shows-100-percent-svr.html

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

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


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

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

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

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

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

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

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

NVHR is a coalition of more than 170 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from chronic viral hepatitis that afflicts more than 5 million Americans. www.nvhr.org
###

www.nvhr.org

Webinar: Hepatitis Advocacy in August

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

Agenda:

1:00 - 1:05: Welcome

1:05 - 1:15: Appropriations update

1:15 - 1:20: Legislation update

1:20 - 1:25: Q & A

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

1:35 - 1:45: Advocacy success stories

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

Webinar Details:

Title: Advocacy in August
Date: August 5, 2010

Time: 10AM Pacific Time / 1PM Eastern Time



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

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

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

Passcode: 327238

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

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

Rep. Hank Johnson: I Have Hepatitis C

*"I'm going to be a public figure who takes the stigma away from having the virus," he said.*
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Rep. Hank Johnson: I Have Hepatitis C

Hepatitis C Can Lead To Cancer, Liver Failure

ATLANTA -- Rep. Hank Johnson, D-Ga., revealed Monday that he has hepatitis C, a serious liver disease that can lead to fatal complications such as cancer or liver failure.

In recent months, Johnson, 55, has appeared thin and frail. The two-term Atlanta-area congressman said in a statement that he has been undergoing rigorous treatment to eradicate the disease, which was first diagnosed in 1998. He said the treatment is going well and that he has been free of the hepatitis C virus for almost a year.

Johnson said he doesn't know how he contracted the virus, which is spread through contact with infected blood. He said he plans to use his public profile to raise awareness of the disease, which infects some 4 million Americans.

http://www.cbsatlanta.com/news/21890634/detail.html

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Rep. Hank Johnson suffering from Hepatitis C

By Michael O'Brien - 12/07/09 06:32 PM ET

Rep. Hank Johnson (D-Ga.) announced Monday that he is suffering from Hepatitis C.

Johnson, a second-term congressman representing metropolitan Atlanta, said he's been suffering from the incurable disease affecting the liver for over a decade.

Johnson disclosed his disease in an interview with the Atlanta Journal-Constitution on Monday, and said that while he was declared free of the disease earlier this year, he had sustained liver damage and other health issues, for which he his currently seeking treatment.

The congressman was given a 20-year prognosis on life when he was diagnosed with the disease in 1998, with his final goal in life to become a congressman -- which he achieved in 2006 when he bested former Rep. Cynthia McKinney (D-Ga.).

Johnson will also seek reelection in 2010, according to the AJC:

Up for reelection in November 2010, Johnson said he is planning to begin campaigning for office again, in earnest, when he's done with his latest round of treatment in February. At least two Republican challengers have said they'll run for his seat.

The Georgia Democrat said he had not engaged in risky behavior (such as intravenous drug use) to contract the disease, and that his goal now would be to campaign against the stigma associated with Hepatitis C.

"I'm going to be a public figure who takes the stigma away from having the virus," he said.

http://thehill.com/blogs/blog-briefing-room/news/71009-rep-hank-johnson-suffering-from-hepatitis-c

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Rep. Hank Johnson battling hepatitis C

December 7, 2009 at 4:10 pm by Patrick Saunders in News

After shedding 30 pounds in the last year and suffering noticeably from slowed speech, confusion and fatigue, Rep. Hank Johnson revealed an 11-year-old secret today: he has been battling hepatitis C.

From the AJC:

He was officially declared free of the virus in January, but it has ravaged his liver, damaged his thyroid and caused other health problems, including depression, for which he’s also being treated. To keep the disease in remission, Johnson is going through an experimental treatment that he said has been the worst part so far.

“I am weaker than I ever have been,” Johnson, 55, said in his Capitol Hill office.

Johnson told the AJC that when his doctor gave him the initial diagnosis in 1998 and told him he had 20 years to live, he got his financial affairs in order and got to work on some life goals. That included winning a seat on the Dekalb County Commission before unseating Cynthia McKinney in the 4th congressional district in 2006.

He told the AJC that doctors have since told him there are “no limitations on how much longer he’ll live.”

Johnson says he has no plans to step down and will run for re-election next November, but won’t start campaigning until after he is done with his latest round of treatment in February.

http://blogs.creativeloafing.com/freshloaf/2009/12/07/rep-hank-johnson-has-hepatitis-c/
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FOR IMMEDIATE RELEASE

December 7, 2009

NVHR Offers Congressman Hank Johnson Support & Encouragement As He Battles Chronic Hepatitis C Virus

Washington, DC-With today's forthright and valiant announcement by Congressman Hank Johnson (D-Ga.) that he is undergoing treatment for chronic hepatitis C virus, the National Viral Hepatitis Roundtable (NVHR) wishes to offer Congressman Johnson, Mrs. Johnson, and his entire family and staff our unwavering support as he works towards a cure.

Congressman Hank Johnson is believed to be the first sitting Member of Congress to acknowledge he is afflicted with chronic hepatitis C virus.

The NVHR is a coalition of more than 150 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from viral hepatitis in the US through strategic planning, leadership, coordination, advocacy, and research. http://www.nvhr.org/

"NVHR and the entire viral hepatitis community offer Congressman Johnson our support and encouragement as he battles chronic hepatitis C virus," said NVHR Chair Lorren Sandt. "In choosing to disclose his condition, Congressman Johnson is helping to propel chronic viral hepatitis to the forefront of our nation's public-health agenda. We are hopeful that Congressman Johnson's announcement will help spur greater awareness about the need for increased prevention, detection, and treatment of chronic viral hepatitis B and C."

In light of this announcement, the NVHR encourages the American people to use it as an opportunity to learn more about the need to address the urgent public health crisis of chronic viral hepatitis B and C infection and to recognize that viral hepatitis is treatable. Hepatitis B is well managed with medications and more than 50 percent of hepatitis C patients are cured with anti-viral therapies. Bipartisan legislation was recently introduced in Congress by Representative Mike Honda (D-Calif.) and Charles Dent (R-Pa.) that would increase federal funding for comprehensive prevention, research, and medical management referral programs for chronic viral hepatitis B and C infection.

An estimated 5.4 million Americans - roughly 1 in 50 - are afflicted with chronic viral hepatitis infection and most don't even know it. Left undetected and untreated, chronic hepatitis B and C can lead to cirrhosis, liver cancer, or liver failure. While African Americans and Asian Americans are disproportionately afflicted with chronic viral hepatitis infection, the diseases infect all walks of life in American society.

In January 2010, the Institute of Medicine (IoM) is expected to release a report on viral hepatitis in the United States that outlines strategies for reducing the incidence of viral hepatitis infection and to mitigate complications in those individuals with chronic infections.

Phil Blando, pblando@abmpartnersllc.com  , 202-258-4978

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December 7, 2009 404-593-9126

Rep. Johnson's statement on hepatitis C

LITHONIA, GA – Over the past year, I have been on a robust course of treatment for hepatitis C (HCV), a virus that affects more than four million Americans. I am pleased to announce that my therapy is progressing well. My physician is encouraged by my response to treatment and expects complete success eradicating the virus.

I hope that my disclosure will provide others suffering from HCV with confidence to speak out and educate the community about this illness. Through clinical trials and medical research, we must always seek new, more effective treatments.

I plan to use my position as a public figure to raise awareness of the consequences of this infection and let others fighting hepatitis know that it is possible to succeed and excel while battling this disease.

The causes of this disease are many, but in the end it does not matter how someone contracted the virus. Like so many millions of others, I was infected many years without ever knowing how I contracted it.

In fact, more than half the people who have hepatitis C don't know how or when they contracted it. And many are fearful of the treatment regimen that impacts your life in unusual ways. Having come through a long course of treatment, I want to send a strong message that a cure is possible but you must be tested and treated.

I will be working with the National Viral Hepatitis Roundtable (NVHR) to help educate my colleagues and the public to learn more about this largely misunderstood disease. It is treatable, but we must devote the will and resources it deserves in light of the urgent need.

Though this infection has caused me some discomfort and frustration, it has in no way affected my ability to legislate and serve my constituents. My record of attendance at votes and in committee meetings is outstanding. I have passed three major bills in this year alone. As Chairman of the Judiciary Subcommittee on Courts and Competition Policy, I have led an active and effective committee. And as Southeast Regional Whip in the House leadership I played a significant role in rallying my colleagues support for historic health reform.

Today, I also announce that I will co-sponsor legislation offered by several of my colleagues in October, 2009 – H.R. 3974 – which would establish, promote, and support a comprehensive prevention, education, research and medical referral program for viral hepatitis infection.

It is a testament to the 111th Congress that we have men and women willing to stand up for average Americans and their families who have been impacted by hepatitis C and related illnesses. It is also gratifying that this is a bi-partisan bill because disease respects no socio-economic status, party or political philosophy.

Rep. Johnson's physician, Dr. Maria Sjogren of Walter Reed Army Medical Center

Congressman Johnson can be an inspiration to thousands of people who suffer from this illness. He has been a model patient, sticking with his course of treatment even when it was most difficult. His determination shows that people suffering from hepatitis can live normal lives and continue to be productive citizens.

Martha Saly, Director of the National Viral Hepatitis Roundtable (NVHR)

On behalf of the entire chronic viral hepatitis community, we offer Congressman Johnson our support, prayers, and encouragement, said Saly, who was treated for hepatitis C in 1999 and cleared the virus. Congressman Johnson's announcement shines a much-needed spotlight on a public-health issue that has historically resided in the shadows. We are hopeful that Congressman Johnson's announcement will help spur greater awareness about the need for increased prevention, detection, and treatment of chronic viral hepatitis B and C.

World Hepatitis Day in Florida on May 19, 2009!

Do you live in Florida? Take part in World Hepatitis Day on May 19, 2009!



Get MORE information on Hepatitis at www.aminumber12.org and www.nvhr.org