PSPam's Hep C Journey

NVHR/NASTAD meeting in DC October 2011~

2011-11-02T03:29:00.000-07:00

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!

2011-10-30T02:17:00.000-07:00

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

2011-08-02T23:34:00.000-07:00

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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Killing Us Softly: What Americans Don't Know & Why It Will Kill Them

2011-06-08T20:10:00.000-07:00

Killing Us Softly: What Americans Don't Know & Why It Will Kill Them

For too long, viral hepatitis, an epidemic that doesn't necessarily make headlines, has steadily and silently affected the lives of millions of Americans. In fact, as many as 5.3 million Americans have hepatitis B or hepatitis C, contributing to a global burden that now engulfs more than half a billion people. These infections fuel a cascade of suffering, including cirrhosis, liver cancer and liver failure. In fact, viral hepatitis is the leading cause of liver transplantation in the U.S. In short, vulnerable communities are being devastated across our nation and, indeed, around the world. Last month, our government made a commitment to advance and integrate national efforts to break the silence.

Why is taking action so necessary? First, because those with the disease can be symptom-free for decades, and few actually know their status or understand how highly infectious viral hepatitis is. For example, hepatitis C is 10 times more infectious and hepatitis B is 100 times more infectious than HIV/AIDS. And nearly two-thirds of those living with hepatitis don't even know they're infected. This tragic lack of awareness leaves infected persons more vulnerable to complications and also more likely to unwittingly spread the infection to others. Second, without action, hepatitis B and C will burden our country with at least $20 billion in health care expenses over the next 10 years. Finally, we know that too many opportunities for prevention, testing and treatment -- including vaccination against hepatitis B -- have remained untapped or underutilized.

Fortunately, the federal government has initiated new efforts to tackle this treatable and highly preventable public health challenge. The U.S. Department of Health and Human Services (HHS) recently released Combating the Silent Epidemic of Viral Hepatitis: Action Plan for the Prevention, Care and Treatment of Viral Hepatitis, a comprehensive strategy to combat the disease. This action plan contains a series of interventions that are both cost-effective and feasible. The plan includes some important building blocks already in place, including vaccination against hepatitis B. Most notably, the Affordable Care Act (ACA) improves patient access to viral hepatitis services through education, testing, vaccination and referral. Moreover, the ACA encourages state-based Medicaid programs to cover clinical preventive services such as immunization. Other strategies aim to raise public awareness about viral hepatitis and to create more opportunities to train health professionals to diagnose, treat and ultimately prevent more people from getting this disease.

We hope that these and other commitments will catalyze action for further progress. On the global front, the World Health Organization has designated July 28 as the first annual World Hepatitis Day. Such attention is long overdue for a condition that affects one in 12 persons worldwide. These new beginnings can shine a bright light on a disease that has lingered for too long in the shadows.

As a nation and as part of a global society, it is time to break the silence. Too many are suffering and the consequences affect us all. Together, we must finally sound the alarm that can serve as a call to action to end this silent epidemic.

Rep Mike Honda is Chair Emeritus of the Congressional Asian Pacific American Caucus. Follow Rep Honda on Facebook and Twitter. Dr. Howard K. Koh is the Assistant Secretary for Health for the U.S. Department of Health and Human Services.

Follow Rep. Mike Honda on Twitter: www.twitter.com/repmikehonda

http://www.huffingtonpost.com/rep-mike-honda/world-hepatitis-day_b_872471.html

You can listen to replay of FDA Teleconference on Boceprevir and Telaprevir

2011-05-23T14:31:00.001-07:00

FDA Teleconference Monday, May 23rd

I know many of you have questions about both these medications. I think if you take 50+ minutes and listen to the replay of the teleconference you will find most of your answers. It will only be available for 30 days so please take advantage of this opportunity. To hear the replay, callers can dial 888-324-7513.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dear Colleague,

The Food and Drug Administration (FDA) invites you to participate in a teleconference briefing to discuss two Direct Acting Antivirals (DAAs) for the treatment of hepatitis C, boceprevir and telaprevir, that were discussed at an April 27 -28, 2011 meeting of the FDA Antiviral Drugs Advisory Committee. DAAs represent a significant addition to the treatment approach for many patients. However, the dosing regimens may be complex, and there are treatment issues about which health care providers and patients should be aware.

The teleconference will be held on Monday, May 23, 2011 from 3:30 PM to 4:30 PM EDT.

Following a brief introduction by Margaret Hamburg, Commissioner of the Food and Drug Administration, the briefing will provide an overview of the clinical trials, primary efficacy, safety, and complexity of dosing regimens. The briefing will consist of presentations by Debra Birnkrant, M.D, Director, and Jeffery Murray, Deputy Director, Division of Antiviral Products, Center for Drug Evaluation and Research (CDER), followed by an opportunity for questions from call participants. The briefing will be moderated by Richard Klein, FDA Office of Special Health Issues.

A replay will be available for 30 days, beginning approximately one hour after the briefing call ends. To hear the replay, callers can dial 888-324-7513.

FDA OKs Telaprevir for Hep C

2011-05-23T14:27:00.000-07:00

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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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

2011-05-13T15:58:00.000-07:00

Boceprevir Wins FDA Approval to Treat Hepatitis C

By Emily P. Walker, Washington Correspondent, MedPage Today
Published: May 13, 2011

WASHINGTON -- The FDA has approved the investigational drug boceprevir (Victrelis), to be used in combination with peginterferon and ribavirin, to treat hepatitis C genotype 1.
Boceprevir, made by Merck, will be the first HCV protease inhibitor to reach market and is expected to be a major advance in treating the disease, which affects between three and four million people in U.S.

"Victrelis is an important new advance for patients with hepatitis C," said Edward Cox, MD, MPH, director of antimicrobial products at the FDA in a press release. "This new medication provides an effective treatment for a serious disease, and offers a greater chance of cure for some patients' hepatitis C infection compared to currently available therapy."

The move was expected after a committee of outside experts voted unanimously in April that the FDA should approve the drug.

The panelists all agreed that boceprevir seems to be a safe and effective new option to treat HCV.

The approval was based on Merck's clinical trials, which showed that, in the difficult-to-treat genotype 1 patients, boceprevir yielded sustained virological response rates as high as 67%.

In contrast, the rate for patients getting the standard regimen of pegylated interferon injections and ribavirin pills was about 40%.

Until now, treatment has relied on boosting the immune system rather than attacking the virus directly.

One panelist at the April meeting marveled at how far HCV treatment has come in the past several decades and said achieving a 60% or 70% sustained response "seems like a dream come true."

The drug carries a number of hematologic side effects, including anemia, neutropenia, and thrombocytopenia. But the advisory committee members said the anemia is a manageable side effect during treatment and is reversible after the drug has been stopped.

The FDA is widely expected to approve another protease inhibitor for HCV, telaprevir, made by Vertex Pharmaceuticals. The same panel that endorsed boceprevir also voted unanimously that telaprevir be approved for the same indication.

Merck said it planned to begin shipping the drug next week.

Eliav Barr, MD, vice president of infectious diseases for Merck, told MedPage Today that about 70% of the estimated four million HCV patients in the U.S. will be candidates for treatment with the drug.

He cautioned that patients must, however, undergo four weeks of peginterferon/ribavirin treatment before initiating boceprevir.

http://www.medpagetoday.com/InfectiousDisease/Hepatitis/26469?utm_source=breaking-news&utm_medium=email&utm_campaign=breaking-news

NVHR Commends New HHS Plan for the Prevention and Treatment of Viral Hepatitis

2011-05-13T15:57:00.001-07:00

Press Release - NVHR Commends New HHS Plan for the Prevention and Treatment of Viral Hepatitis

May 12, 2011
Contact: Martha Saly
707.480.0596 – mbsaly@nvhr.org

NVHR Commends New HHS Plan for the Prevention and Treatment of Viral Hepatitis

A new Department of Health and Human Services (HHS) action plan for viral hepatitis takes the much needed step of establishing a roadmap to help improve response to this growing health problem. The HHS Action Plan for the Prevention and Treatment of Viral Hepatitis, released today by Assistant Secretary for Health Dr. Howard Koh, follows a 2010 Institute of Medicine (IOM) report, Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C. The IOM report found a troubling lack of knowledge about the devastating impact of this disease among health care and social services providers, at-risk populations, the general public and policymakers. The IOM report was commissioned in part by the National Viral Hepatitis Roundtable (NVHR).

“The release of the HHS Action Plan offers a tremendous opportunity to change the course of the viral hepatitis epidemic in the U.S.,” said Martha Saly , Director of the National Viral Hepatitis Roundtable (NVHR), “However, this plan will only be effective if the Administration strongly supports its implementation and Congress demonstrates leadership by increasing resources for prevention, education, care and treatment services for Americans, especially vulnerable and underserved populations, who are most at risk for viral hepatitis infections and their consequences.”

The CDC estimates that, 65% of people infected with hepatitis B and 75% of people infected with hepatitis C do not know that they have the disease, yet 1 in 12 Asian/Pacific Islander Americans is living with hepatitis B and African Americans are twice as likely to be infected with hepatitis C as the general population.

“With limited funds available for viral hepatitis, our nation does a poor job of screening and early intervention,” Saly said, noting that “most infected individuals only become aware of their condition after it has progressed to cirrhosis, liver failure, or liver cancer. That is not only a tragedy for those afflicted, but it also winds up costing much more money for our health care system.”

NVHR has prioritized viral hepatitis and liver cancer screening, along with tackling health disparities and barriers to care among Asian Americans, African Americans and other disproportionately affected populations; strengthening prevention efforts to confront a new wave of infections do to heroin use; and improving viral hepatitis services at community health centers as areas where the Federal Government can make an immediate impact on the burden of viral hepatitis in the United States.

NVHR is a coalition of more than 170 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

COMBATING THE SILENT EPIDEMIC of VIRAL HEPATITIS
Action Plan for the Prevention, Care & Treatment of Viral Hepatitis

Just click on this link:

http://nvhr.org/sites/default/files/Viral-Hepatitis-Action-plan-2011.pdf

You can also find the link on the NVHR Home page at:

www.nvhr.org

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

2011-05-11T15:22:00.000-07:00

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.

My Birthday Wish (63 this year and holding - about 40+ years with the dragon!)

2011-05-09T00:42:00.000-07:00

My Birthday Wish (63 this year and holding - about 40+ years with the dragon!)

Bulletin from the cause: Hepatitis Education Awareness and Liver Support
Go to Cause on Facebook http://www.causes.com/causes/192539
Posted By: PS Pam

To: Members in Hepatitis Education Awareness and Liver Support
My Birthday Wish (63 this year and holding - about 40+ years with the dragon!)

Hello, and thanks for checking out my Birthday Wish!

For my birthday on May 22nd, I'm asking my friends and family for a special gift: help me raise $1000 for Hepatitis Education Awareness and Liver Support. It's a great cause that educates, supports and advocates for Hepatitis - especially Hepatitis C!

I chose Hepatitis Education Awareness and Liver Support because we need help to educate and advocate wherever and whenever we can!

Please consider giving to my Birthday Wish, and together we can destigmatize Hep C, educate the general public about Hep C and why it is so important to get tested and seek medical advice for possible treatment! If you can't give now, I'd really appreciate if you'd share this page with your friends.

Thanks so much,

PSPam

http://www.HEALSoftheSouth.org has a PayPal button or http://www.causes.com/causes/192539

Call to Action
Fundraising Project: H E A L S OF THE SOUTH INC
Donate

Hepatitis C - The Basics

2011-04-21T14:49:00.001-07:00

Hepatitis C - The Basics

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

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

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

2011-04-13T16:13:00.000-07:00

Hi fellow Hepatitis C advocates! Please join me for WEGO Health’s Webinar: Navigating Your Health Narrative!
~~~~~~~~~~~~~
You can register for WEGO Health’s exciting new webinar too so I wanted to share with everyone. Here are the particulars:

What: Navigating Your Health Narrative Webinar
Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D
When: Thursday April 21st 8pm EST (the webinar will last one hour)
Where: Sign up here http://info.wegohealth.com/navigating_your_health_narrative/?source=health_blogger_contest_invite
and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

Please help me spread the word to the Hepatitis C Community!

Hepatitis Health Action! The Hepatitis Community Responds to Health Care Reform

2011-04-11T14:37:00.000-07:00

Hepatitis Health Action!
The Hepatitis Community Responds to Health Care Reform
Action Alert!

Prevention Funding in Health Care Reform Under Attack

Tell Your Representative to Vote NO on H.R. 1217

On April 5th, Republicans in the House of Representatives continued their assault on the Affordable Care Act when the House Energy and Commerce Committee voted along partisan lines in favor of H.R. 1217, which would repeal the Prevention and Public Health Fund. This fund, part of the health care reform law, 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 offers a great opportunity for us to get some of the money targeted to viral hepatitis prevention, screening, and testing programs. How can we advocate for that money if the entire fund is repealed. We also must protect this fund as part of defeating the ongoing strategy by those who oppose the Affordable Care Act to attack the law by repealing and defunding its important pieces.

The full House of Representatives is expected to vote on H.R. 1217 as early as this week. Please take a few minutes to call your Representative and tell him/her to vote NO.

What YOU can DO:

Please call your U.S. House Representative 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 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 to urge Representative ____________ to vote no on H.R. 1217. This bill would repeal 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.”

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 Christina at cchun@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.

· Follow Hepatitis Health Action’s blog for news and commentary: http://hephealthaction.wordpress.com

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

Martha Saly
Director
National Viral Hepatitis Roundtable
707-480-0596
www.nvhr.org

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

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

2011-04-03T22:24:00.000-07:00

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: Administration's 2012 Budget Proposal Represents 'Sea Change'

2011-02-18T00:55:00.000-08:00

PRESS RELEASE
February 14, 2011
For Immediate Release

Contact:
Martha Saly
mbsaly@nvhr.org
www.NVHR.org

NVHR: Administration's 2012 Budget Proposal Represents 'Sea Change' Budget Proposal Calls for $5 Million Increase

For State-based Surveillance, Screening & Treatment Programs
In National Response to Viral Hepatitis Epidemic

Washington, DC-The Administration's 2012 budget proposal to increase federal funding for expanded state and locally based viral hepatitis surveillance, screening, and treatment by more than $5 million heralds a sea change in our nation's national strategy to respond to the viral hepatitis epidemic, the National Viral Hepatitis Roundtable (NVHR) said today.

"On behalf of more than 6 million Americans afflicted with viral hepatitis B and C, NVHR would like to say, 'Thank you, Mr. President," said NVHR Director Martha Saly. "With this budget proposal of $25 million, the Administration has recognized that early intervention and prevention are the cornerstones of an effective national viral hepatitis strategy. In the coming months, NVHR looks forward to working closely with the Administration and Members of Congress from both sides of the aisle to make this proposal reality."

More than 6 million Americans are estimated to be afflicted with viral hepatitis and three-quarters of them don't know it. Most infected individuals only become aware of their disease after it has progressed to liver failure, cirrhosis, or liver cancer. With the vast majority of liver cancers caused by unchecked viral hepatitis, the Administration's increased funding proposal for early intervention and treatment promises to help reduce the incidence of liver cancer as well.

The Administration's budget proposal on viral hepatitis specifically states:

"CDC's FY 2012 request of $25,000,000 for VH reflects an increase of $5,222,000 above the FY 2010 level. With this increase, CDC will expand and strengthen surveillance capacity in 10 high burden state and local health departments to detect VH transmission, monitor health disparities and implementation and impact of recommended prevention services; develop and execute VH awareness and training programs for public health and clinical care professionals to implement and scale-up VH screening and care referral; and enhance work with global partners to implement VH surveillance and prevention programs in high burden countries."

The Administration's budget proposal is the first of many new expected developments on viral hepatitis in 2011. Next month, the US Department of Health & Human Services is expected to unveil a national strategy for the prevention of viral hepatitis and liver cancer. On Capitol Hill, bipartisan legislation that garnered support from over 70 House Members in the 111th Congress is expected to be introduced again. And this summer, two new drug therapies are expected to receive final approval from the Food & Drug Administration (FDA) that will great enhance hepatitis C treatment.

www.nvhr.org

Happy Holidays from H.E.A.L.S of the South!

2010-12-20T18:11:00.000-08:00

Dear Friends,

As 2010 draws to a close, H.E.A.L.S of the South wants to remind you that we need YOUR help so that we can continue to help others. We depend on you!

H.E.A.L.S of the South continues to support many online support groups, a live support group, does telephone counseling, educational and informational mailings, testing events, health fairs, speaking engagements, Legislative and World Hepatitis Days and we continue to have the HCV Handbook accessible to all online.

During this holiday season, we want to wish everyone a HEALTHY and happy New Year and a very Merry Christmas. We want to remind those of you who might wish to support H.E.A.L.S work that we are a 501(c)3 charitable organization and that contributions made before the end of the year will be tax deductible for 2010.

To donate, visit http://www.HEALSoftheSouth.org and click on the Donation button or send a check to:

H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318

We thank you for your support--financial and otherwise--over the past ten years that H.E.A.L.S has been working towards Hepatitis Education Awareness and Liver Support. We look forward to continuing our collaboration with you during 2011. Remember to educate others to test for Hepatitis C, be vaccinated for Hepatitis A and B and to sign their organ donor cards.

Merry Christmas and Happy New Year!

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

NVHR Welcomes Dr. Koh’s Remarks at AASLD, But Warns that Viral Hepatitis Battle Demands Decisive National Leadership

2010-11-02T01:50:00.000-07:00

November 1, 2010

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

NVHR Welcomes Dr. Koh’s Remarks at AASLD, But Warns that Viral Hepatitis Battle Demands Decisive National Leadership

Boston, MA—In a keynote address delivered yesterday afternoon on chronic viral hepatitis, one of the Administration’s top health officials provided an outline of the forthcoming HHS “federal action plan” on viral hepatitis and pledged renewed federal leadership to translate this plan into reality. Dr. Howard Koh, US Assistant Secretary of Health at the US Department of Health & Human Services, made the remarks before thousands of liver health experts at the American Association for the Study of Liver Disease (AASLD) 61st annual meeting in Boston.

“NVHR is encouraged that Dr. Koh recognizes that the viral hepatitis battle can only be won with strong and decisive national leadership,” said Ms. Lorren Sandt, NVHR Chair and Executive Director of Caring Ambassadors Program, based in Portland, Oregon. “Given all that is at stake, we are eager to review the forthcoming HHS national strategy as soon as possible. Dr. Koh’s remarks yesterday were most welcome and stand in stark contrast to this Administration’s otherwise lackluster response to this urgent public-health crisis. Chronic viral hepatitis is a winnable public-health battle and it’s high time the Administration responded accordingly.”

More than 5 million Americans are afflicted with chronic viral hepatitis B or C and an estimated 500 million individuals are infected worldwide. Most Americans afflicted with chronic viral hepatitis are unaware they are infected. Without targeted screening and testing programs for those most at risk, most individuals only become aware of their condition after their infection progresses to liver failure, cirrhosis, or liver cancer. Viral hepatitis is the overwhelming cause of liver cancer, which kills nearly 20,000 Americans annually.

In his remarks, Dr. Koh outlined six key areas that will provide the foundation of the new HHS national strategy. These areas include educating providers; strengthening surveillance; better care, screening, and treatment; encouraging appropriate vaccinations to reduce the incidence of hepatitis B; reducing drug use; and protecting health workers from infections. NVHR continues to have concerns that the Administration’s funding levels for state-based viral hepatitis screening and treatment programs are wholly inadequate. In fact, federal funding for 2011 is actually less than it was a decade ago. Meanwhile, this crisis has only worsened.

Ms. Sandt added, “There is a strong expert consensus about what needs to be done to address the chronic viral hepatitis crisis. Thus far, we have lacked the political will. Policymakers face a stark choice: we can either invest the resources now to pay for successful viral hepatitis intervention and treatment or we can pay for failure over the next two decades with billions of dollars in avoidable medical costs and thousands of unnecessary liver transplants and deaths.”

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

NVHR: In Fighting for ‘Six Winnable Battles,’ CDC May Lose the Nation’s Overall Public-Health War

2010-10-03T19:19:00.000-07:00

NVHR: In Fighting for ‘Six Winnable Battles,’ CDC May Lose the Nation’s Overall Public-Health War

WASHINGTON, Sept. 30 /PRNewswire-USNewswire/ — In response to the Centers for Disease Control (CDC) Director Dr. Thomas Frieden’s release of “six winnable battles” in health care, Ms. Lorren Sandt, Chair of the National Viral Hepatitis Roundtable (NVHR) and Executive Director of Caring Ambassadors Program, based in Portland, Oregon, released the following statement:

“The CDC’s newly released ‘six winnable battles’ strategy makes a mockery of the broad-based, comprehensive, and integrated public-health strategy that our nation so desperately needs. In seeking to win six narrowly defined health care battles, the CDC may well lose the overall public-health war.

“Chronic viral hepatitis B and C are among dozens of conditions that are shortchanged by this PR-driven public-health approach from CDC. We can and must do better. How can a vaccine preventable virus, hepatitis B, and the only virus we can cure, hepatitis C, fail to make this list?

“Chronic viral hepatitis afflicts more than 5 million Americans directly and, by extension, tens of millions more of their loved ones. Most Americans are not aware they are infected until they present with serious related illnesses. Without adequate screening and treatment, chronic viral hepatitis often progresses to cirrhosis, liver cancer, and liver failure.

“Over the past year, experts from the Institute of Medicine, the American Association for the Study of Liver Diseases, and the Trust for America’s Health have all identified how best to address the viral hepatitis epidemic with common-sense action plans. Regrettably, the Administration is lacking the political will to implement them.

“The CDC’s omission of viral hepatitis from its list of ‘winnable battles’ is not simply an oversight – it’s an abdication of duty to many Americans who may well lose their battle with chronic viral hepatitis in the decades to come.”

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. http://www.nvhr.org/

SOURCE National Viral Hepatitis Roundtable

RELATED LINKS

http://www.nvhr.org/

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
CDC chief picks 6 ‘winnable battles’ in health

ATLANTA — Where would you start if you were charged with keeping the nation healthy? Dr. Thomas Frieden, director of the Centers for Disease Control and Prevention, has chosen six priorities — winnable battles, he calls them.

They are smoking, AIDS, obesity/nutrition, teen pregnancy, auto injuries and health care infections. These are long-standing, major challenges that get a lot of attention already.

But elevating a handful of problems above dozens of others is a bold move for a public health official. So far, it’s been received like a bucket of cold water — invigorating some, infuriating others.

Many advocates, legislators and others in public health have devoted their lives to problems that did not make Frieden’s short list. So there are complaints.

A CDC employee blog is peppered with postings like, “I guess climate change is not a battle worth winning,” and “Don’t we still owe the patients of tomorrow an investment in things that may not pay off immediately?”

Some advocates wonder aloud just how targeted federal public health dollars are going to be. A particular point of concern is hepatitis C, a long under-recognized liver-destroying virus which has infected more than 3 million Americans. Some experts consider the issue a ticking time bomb and have called for the government to step up efforts to prevent it and better diagnose and treat people who already are infected.

Hepatitis B and C already are “badly neglected” by the CDC, and their omission from Frieden’s winnable battles list is more bad news, said Bruce Burkett, past president of the National Hepatitis C Advocacy Council.
“I was very disappointed that it wasn’t on there. This is going to affect millions by not being on there,” he said.

Frieden, who took over CDC in June last year, already had a reputation as something of a public health maverick. When he started his previous job as New York City’s health commissioner in 2002, he began by identifying the city’s most pressing health issues. He led campaigns to ban smoking in the workplace, tax soda, cut salt in processed foods, and ban artificial trans fats in restaurants.

It’s no surprise that he is boldly painting targets at the CDC, said Dr. Jo Ivey Boufford, president of the New York Academy of Medicine. She’s a fan of Frieden’s who worked with him as a member of an advisory council to the city health department.

Frieden’s CDC job, ironically, does not provide the same kind of power he had in New York City to engineer bans or tax increases. But Frieden calls his new short list “winnable battles” because, he says, proven programs can save lives and reduce harm from each of these health problems. He believes government can make dramatic improvements if available money and manpower are focused.

“In each of these areas we know what to do to make a difference and we need to do it to a much greater extent,” he said in an interview.
Frieden, with a low-key demeanor, has said relatively little about this to the public, though he seems to be building support within the public health community.

There is some nervousness about how far Frieden’s going to take this.
“I think everyone is going to be cautious in how the focus on winnable battles is balanced against other areas” that are also deemed important but may not be as easy to dent, said Jeff Levi, who heads Trust for America’s Health, a research group.

Top CDC officials have been quick to say they have no intention of walking away from other public health missions. They couldn’t even if they wanted to, because much of the agency’s funding is directed to certain causes by Congress. According to one estimate, less than one-tenth of 1 percent of CDC’s $6.6 billion budget is discretionary money that can be channeled into the winnable battles campaign. Indeed, the agency has been asking for more flexibility.

But there’s power in perception, especially concerning CDC’s grant money to states. Nearly a quarter of that is targeted at the six battle areas, which already were major areas of interest. State health officers say they’re acutely aware of Frieden’s priorities and want him to know it when they apply for CDC money.

“We’re in the position of focusing pretty much on what we can get federal funds for,” said Will Humble, director of the Arizona Department of Health Services.

Humble and several other public health leaders applaud Frieden’s priorities as an overdue attempt to narrow the public health message and better market health improvement to Americans.

“You can’t market if your message is too diffuse,” Humble said. “If we’re all on the same page and working in the same direction, we can get a lot more momentum.”

This isn’t how many public health officials traditionally operate, partly because they tend to worry about alienating employees, legislators and advocates, observed Stanton Glantz, a University of California-San Francisco expert on the health effects of smoking.
Other top federal health officials have not been as specific. U.S. Surgeon General Dr. Regina Benjamin, the government’s chief health educator, has made the broader themes of prevention and wellness her focus.
But Frieden clearly has the blessing of his Obama administration bosses to set clear targets.

“Getting focused, and getting some quick wins under your belt, is terribly important,” said Victor Strecher, a University of Michigan health behavior expert.

Progress in these areas has long been measured by health statistics. What exactly will constitute a win? Frieden hasn’t said yet.
___
Online:
CDC Web page describing winnable battles: http://bit.ly/bCd8Lr

http://www.google.com/hostednews/ap/article/ALeqM5gI1c0qXFNYNrk_xbZ5U2UW798gDQD9IICK2O0?docId=D9IICK2O0

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

2010-09-28T00:06:00.000-07:00

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

Kerry Introduces Bill to Fight Viral Hepatitis

2010-08-07T14:42:00.001-07:00

Kerry Introduces Bill to Fight Viral Hepatitis

For Immediate Release: Thursday, August 5, 2010

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

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

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

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

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

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

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

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

Webinar: Hepatitis Advocacy in August

2010-07-30T23:53:00.000-07:00

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

Agenda:

1:00 - 1:05: Welcome

1:05 - 1:15: Appropriations update

1:15 - 1:20: Legislation update

1:20 - 1:25: Q & A

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

1:35 - 1:45: Advocacy success stories

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

Webinar Details:

Title: Advocacy in August
Date: August 5, 2010

Time: 10AM Pacific Time / 1PM Eastern Time

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

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

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

Passcode: 327238

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

World Hepatitis Day in Washington DC on May 19, 2010

2010-06-24T19:09:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

Advocates Rally in San Francisco and Washington to Raise Awareness and Demand Funding for Hepatitis B an C

2010-06-04T20:44:00.001-07:00

Advocates Rally in San Francisco and Washington to Raise Awareness and Demand Funding for Hepatitis B an C

By Liz Highleyman

SUMMARY: Hepatitis advocates gathered in San Francisco and Washington, DC, on May 19 -- World Hepatitis Day -- to bring attention to chronic hepatitis B and C and to call for increased funding for public education, testing, treatment, and care. Speakers described their experiences with stigma, difficulty accessing treatment, and side effects and suboptimal effectiveness of current hepatitis C therapies, while expressing hope for new directing-acting HCV drugs that are expected to start becoming available in the next couple years.

"We're here to give a voice and a face to a disease that remains in the shadows," said Randy Allgaier, co-chair of the [San Francisco Hepatitis C Task Force[http://www.hepcsf.org], speaking from the steps of City Hall. "San Francisco must move out of the shadows of this silent epidemic, because as we learned with HIV, silence equals death."
The local rally brought out about 50 activists under an unseasonable light rain.
Nick Panagopoulos from the office of Mayor Gavin Newsom -- who spearheaded the creation of the task force -- and Alex Randolph, aide to Supervisor Bevan Dufty, both presented proclamations recognizing World Hepatitis Day.

While the rally focused on hepatitis C, Allgaier applauded the new Hep B Free campaign which aims to raise awareness among the city's large Asian community, a group at especially high risk for hepatitis B.

Task force co-chair Dominique Leslie related her journey with hepatitis C, reflecting issues faced by many people with the disease. Leslie was diagnosed with non-A/non-B hepatitis in 1988, the year before the hepatitis C virus (HCV) was discovered. At the time, she was told not to worry and that she didn't need to do anything. By 2000, she began to develop symptoms of liver disease, but was told they were not due to HCV. Since then, she said she has been denied treatment twice because she is transgender, and she is now on the liver transplant waiting list.

"I joined the task force so other people don't have to go through what I face," she said. "I've been clean and sober for more than 20 years, but active drug users are being denied treatment and access to clinical trials."

Other speakers represented the diverse face of hepatitis C. Todd is an HIV positive former methamphetamine user who never used needles and believes he got HCV through sex. Today he is clean and sober, and both his HIV and HCV are undetectable, but "it was no picnic getting there," he said.

Robin, an older woman who was diagnosed with hepatitis C years ago, has been free of the virus for 8 years with the help of holistic therapy including acupuncture. "HCV is the first virus for which we have a cure, but unfortunately the treatments are very difficult and they don't work for everyone," she said.

Jack and Havoc are 2 young men involved with UCSF's UFO Project for young injection drug users. Jack started interferon, but lasted only 3 months due to side effects; against all odds, however, he managed to clear HCV anyway. But Havoc, a member of San Francisco's new Drug Users Union, lacks permanent housing, has not been able to get on interferon treatment, and his liver disease is progressing.

Finally, Karen Aziz compared her experiences as a woman dually diagnosed with hepatitis C and breast cancer. When she learned she had breast cancer, she recalled, she was told about all the available treatment options and referred to a support group.

"Companies sponsor walks for research, you see uplifting commercials, patients are lauded as heroes, and everyone shows compassion," she said. "It's quite the opposite for hepatitis C. "No company wants to sponsor a race for the cure for this disease. Our struggles are secret, silent, and lonely. We need funding for full medical care for everyone who needs it so a diagnosis of hepatitis C need not be a death sentence."

--------------------------------------------------------------------------------

Below is a press release from the National Viral Hepatitis Roundtable about the Washington rally.

On World Hepatitis Day 2010, NVHR Capitol Hill Rally Attracts
Hundreds of Americans & Five Members of Congress to
Support Increased Federal Funding for Viral Hepatitis

Washington, DC -- May 19 -- Surrounded by a diverse group of 500 Americans from the viral hepatitis B and C communities united in common purpose on World Hepatitis Day 2010, the National Viral Hepatitis Roundtable (NVHR) today hosted a Capitol Hill rally urging swift action to fix the federal funding crisis for 5 million Americans afflicted with chronic viral hepatitis. With the support of a boisterous crowd, NVHR was joined by five Members of Congress, Congressmen Hank Johnson (D-Ga.), Mike Honda (D-Calif.), Charles Dent (R-Pa.), Anh "Joseph" Cao (R-La.), and Mike Cassidy, M.D. (R-La.), whom all pledged to make the promise of increased federal funding a reality this year and to address the viral hepatitis funding problem once and for all.

"NVHR has a simple and direct message for Washington: we are not going away and we will no longer be ignored. Until Congress and the Administration act once and for all to fix the funding crisis, we will be unrelenting in demanding adequate federal funding for viral hepatitis screening, education, and intervention programs for 5 million Americans," vowed Ms. Lorren Sandt, NVHR Chair and Executive Director of Caring Ambassadors Program, based in Portland, OR. "In the absence of federal leadership, the annual costs of viral hepatitis to Medicare and Medicaid could reach $85 billion in the coming decade. Swift federal action now will help millions of Americans and help mitigate an otherwise inevitable fiscal disaster. The time for action is now. Our community and our nation cannot afford any more delays."

Today's rally featured 500 Americans from all walks of life united in their cause to urge Washington to act. Representing 11 states and the District of Columbia, the rally featured speakers representing NVHR, the National Alliance of State and Territorial AIDS Directors, the District of Columbia Department of Health, Veterans Aimed towards Awareness, the Association of Asian Pacific Community Health Organizations, Community AIDS National Network, Hepatitis B Foundation, Greater Washington Viral Hepatitis Support Group, Harm Reduction Coalition, North General Hospital, Hepatitis Education Program, Chinese American Medical Society, Hepatitis B Initiative-DC, National AIDS Treatment Advocacy Project, Hepatitis C Support Project, Hepatitis C Association, and many others. The rally also featured a Silent Vigil in tribute to those individuals lost to hepatitis B or C.

Approximately 1 in 50 Americans are afflicted with chronic viral hepatitis B or C -- with most unaware they are infected, especially African Americans and Asian Americans. Without detection and treatment, chronic viral hepatitis leads to liver cancer, cirrhosis, or liver failure. In the absence of federal leadership, the research firm Milliman estimates that public and private payers' cost of treating chronic viral hepatitis C alone will more than triple by 2024 to $85 billion annually. Medicare and Medicaid would absorb a disproportionate share of these added costs.

Earlier this year, the Institute of Medicine (IOM) released a landmark report blasting the federal government for its inadequate response to this crisis. Since the January 2010 release of the IOM report, the Administration has done little to help assuage the viral hepatitis community. The Administration's budget proposal for 2011 would fund the Division of Viral Hepatitis at a level actually lower than allocated a decade ago during the Clinton Administration.

Bipartisan legislation, HR 3974, "The Viral Hepatitis and Liver Cancer Control and Prevention Act," sponsored by Representatives Mike Honda (D-Calif.), Charles Dent (R-Pa.) and 36 other House Members would correct this shortfall. The Honda-Dent legislation would increase the ability of the CDC to support state health departments in their prevention, immunization and surveillance, and referral to care efforts. Much of the Honda-Dent legislation tracks with the IoM's recommendations.

NVHR is a coalition of more than 150 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from chronic viral hepatitis that afflicts more than 5 million Americans. For more information, visit www.nvhr.org.

5/21/10

Source
National Viral Hepatitis Roundtable. On World Hepatitis Day 2010, NVHR Capitol Hill Rally Attracts Hundreds of Americans & Five Members of Congress To Support Increased Federal Funding for Viral Hepatitis. Press release. May 19, 2010.

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

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

2010-04-18T17:26:00.001-07:00

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

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

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

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

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

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

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

2010-04-06T19:34:00.001-07:00

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

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

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

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

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

2010-03-30T01:44:00.000-07:00

A Call to Action! Do it TODAY!

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

Contact your Representative!

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

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

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

Make a Phone Call! Send an Email!

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

Sample call/email script:

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

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

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

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

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

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

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

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

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

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

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

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

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

2010-03-30T01:25:00.001-07:00

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

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

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

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

2010-02-04T01:24:00.000-08:00

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

Dear Advocates:

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

The Liver Cancer Free Campaign

Together we Can

Are you aware of these FACTS?

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

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

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

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

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

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

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

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

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

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

Sincerely

Mark Li MD
Coordinator January 28, 2010

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

2010-01-28T23:12:00.000-08:00

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

Ms. Lorren Sandt, Chair of the National Viral Hepatitis Roundtable (NVHR) issued the following statement in advance of the President's State of the Union Address. NVHR is a coalition of more than 150 public, private, and voluntary organizations dedicated to reducing the incidence of infection, morbidity, and mortality from chronic viral hepatitis that afflicts more than 5 million Americans:

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

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

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

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

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

SOURCE National Viral Hepatitis Roundtable

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

Please Help H.E.A.L.S of the South Help Others with Hepatitis

2009-12-18T14:13:00.000-08:00

Please Help H.E.A.L.S of the South Help Others with Hepatitis

Hello everyone! Happy Holidays!

We hope you had a Happy Thanksgiving and are ready to have a Merry Christmas and a HEALTHY and Happy New Year!

2009 is drawing to a close and we would like to ask you to remember during this season of "giving" that H.E.A.L.S of the South is a 501 (c) (3) nonprofit and your donation will be tax deductible and greatly appreciated! We depend on YOU to help us keep going! Please Help H.E.A.L.S to Help Others with hepatitis.

Hepatitis Education Awareness and Liver Support is our mission. We counsel newly diagnosed patients, offer support via internet groups and telephone counseling, do mailings of informational Hepatitis C books and pamphlets, attend Health Fairs, provide testing events, speak wherever and whenever we can about Hepatitis C to the public and participate in Local, State, National and Global Hepatitis Awareness activities as we can.

Your donations can be mailed to:
H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318

Or you can utilize our PayPal button at:
http://www.healsofthesouth.org/ The button is on the right side of each page.
Don’t forget to check out our online Hepatitis C Handbook while you are there!

We look forward to hearing from you and ask that you please forward this request to others. We thank you for your support over the years and look forward to continuing to Help Others with Hepatitis, especially Hepatitis C.
Get Tested for Hep C and Get Vaccinated for Hep A and Hep B!

Peace
H.E.A.L.S of the South
http://www.healsofthesouth.org/

Rep. Hank Johnson: I Have Hepatitis C

2009-12-07T21:42:00.000-08:00

*"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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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/
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

Viral Hepatitis and Liver Cancer Prevention and Control Act of 2009

2009-12-03T17:18:00.000-08:00

The Viral Hepatitis and Liver Cancer Prevention and Control Act of 2009 has been introduced and we need your help to get it passed. Please show your individual or organization support of this important legislation by signing the letter below.

Please pass this email on to everyone you know. Let's show Congress that Viral Hepatitis effects every community in America!

Best regards,
Lorren Sandt, Chair

Click Here to add your organization's support.
http://www.surveymk.com/s.aspx?sm=3gVmq%2bS1YbmHLKxbypJkrA%3d%3d

Click Here to add your support as an individual.
http://www.surveymk.com/s/5VHQL65

To read HR 3974 Click Here.
http://www.nvhr.org/pdf/HR3479.pdf

Dear Representative,

The undersigned organizations (individuals) have declared their support for HR 3974, the Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009, and urge you to become a co-sponsor of this important bi-partisan public health legislation. HR 3974 will increase awareness and prevention of diseases that are already afflicting more than 5 million Americans - more than half of whom do not know they are infected - and will help to avoid tens of billions of dollars in unnecessary health care costs in the coming decade. The legislationamends the Public Health Service Act to direct the Secretary of Health and Human Services to establish, promote, and support a comprehensive prevention, education, research, and medical management referral program for viral hepatitis infection that will lead to a marked reduction in the disease burden associated with chronic viral hepatitis and liver cancer.

Congressman Mike Honda (D-CA) and Congressman Charles Dent (R-PA) introduced HR 3974 on October 29, 2009. Representatives William Cassidy (R-LA), Edolphus Towns (D-NY), Anh "Joseph" Cao (R-LA), David Wu (D-OR), Todd Platts (R-PA), Donna M. Christiansen (D-VI), Barbara Lee (D-CA), Bobby Rush (D-IL), George Butterfield (D-NC), and Judy Chu (D-CA) are co-sponsors.

Hepatitis B and hepatitis C are highly infectious blood-borne viruses that cause liver disease, liver cancer, and premature death. Hepatitis B and hepatitis C are the leading causes of primary liver cancer, one of the most deadly cancers, with five-year survival rates of only 11 percent. While the incidence of many cancers is declining, rates of liver cancer are increasing. Chronic hepatitis B virus (HBV) is treatable when detected early and properly managed. In about 50 percent of the cases, chronic hepatitis C virus (HCV) can be cured.

Over the next 10 years, Medicare and private insurance costs for individuals with chronic HCV, which disproportionately affects the baby-boomer generation, will more than double to at least $85 billion annually. As the population ages and the disease progresses, government payers will bear the majority of the financial impact of chronic HCV infection. The numbers for chronic hepatitis B are also frightening; approximately 25 percent of persons with chronic HBV infection die prematurely from cirrhosis or liver cancer. Anestimated 1,000- 5,000 persons die each year inthe U.S. from HBV-related liver cancer. From 2010 to 2030, the number of liver cancer cases in the U.S. is expected to rise 59 percent, with the highest increases expected among Hispanics and Asian Pacific Islanders. Early intervention can improve the outcome for those living with chronic viral hepatitis and HR 3974 will help to assure that early intervention occurs.

We urge you to make liver cancer, chronic hepatitis B, and chronic hepatitis C, a leading health priority. We look forward to your co-sponsorship of the Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009.

Sincerely,
National Viral Hepatitis Roundtable
Rohnert Park, CA 94928

HCV Awareness: Harlem Hepatitis C Task Force Meeting Highlights

2009-11-25T20:14:00.000-08:00

HCV Awareness: Harlem Hepatitis C Task Force Meeting Highlights

Tech May Have Exposed Thousands to Hep C

2009-07-03T22:17:00.000-07:00

This is an email that I thought was important enough to send to most everyone in my address book. My jokelist, my info list, my "professional" list, etc. as this is another good example of why Hepatitis C is "everyone's" disease and if you are a friend of mine or receive my emails for any reason I would hope that by now you have gotten tested and KNOW YOUR HEPATITIS C STATUS. Don't take it for "granted"

If you haven't been tested - PLEASE DO SO!

This is sadly NOT an unusual situation and over the years I have posted many stories about Hepatitis C being passed at pain clinics, MD offices, dentists, endoscopy clinics, tattoo shops, beauty parlors and barber shops, just a variety of ways that blood to blood transmission can occur and "you" are not even aware.

PLEASE get vaccinated for Hepatitis A and B and GET TESTED for Hepatitis C!

Please ask your doctors why they aren't testing!
Please ask your news reporters why they aren't reporting about this silent epidemic!
Please ask your elected officials why they aren't doing more to fund programs for hepatitis C or to bring education and awareness to the general public!

Please tell 12 other people to GET TESTED for Hepatitis C!

Some form of Hepatitis affects 1 in 12 people in the world. Are YOU number 12? www.aminumber12.org Pretty staggering statistic!

Hepatitis C patients outnumber HIV patients about 5 to 1 in the United States. Do YOU really know anything about hepatitis C? Please educate yourselves and your loved ones.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tech May Have Exposed Thousands to Hep C

Woman Faces Criminal Charges for Swapping Her Own Dirty Syringes for Ones With Narcotic

AP) A former surgery technician may have exposed thousands of Colorado patients to hepatitis C when she swapped her own dirty syringes for ones filled with a powerful narcotic, federal authorities said Thursday.

Kristen Diane Parker faces criminal charges for allegedly making the swaps while working at Audubon Ambulatory Surgery Center in Colorado Springs and Rose Medical Center in Denver.

Authorities say Parker admitted to changing out syringes containing a saline solution with ones filled with the painkiller Fentanyl. Parker injected herself with the drug, according to a complaint filed Thursday in U.S. District Court in Denver.

An affidavit by Mary F. LaFrance, an investigator for the U.S. Food and Drug Administration, says at least nine surgery patients at Rose have tested positive for hepatitis C, which is incurable. About 6,000 patients are being advised they may have been exposed and need to be tested.

Hepatitis C is a blood-borne disease that can cause serious liver problems, including cirrhosis or liver cancer. The illness is treatable, but there is no cure. Symptoms can include nausea, diarrhea, fatigue, pain and jaundice.

Rose Medical Center officials told a news conference Thursday night they were working with the Colorado Department of Public Health and Environment to determine whether Parker was the source of the virus. It could not be determined Thursday night whether Parker had an attorney.

Parker worked at Rose from Oct. 21, 2008, until April. Hospital officials say she was suspended April 13, before they learned of the cases, and then fired. She had failed a drug test by testing positive for Fentanyl.

Parker went to work for the Audubon surgery center shortly after being fired. She worked there from May 4 until Monday, Dr. J. Michael Hall, Audubon's medical director, told The Gazette in Colorado Springs.

If convicted of tampering with a consumer product and other charges, she faces up to 10 years in prison and a maximum $250,000 fine on the most serious charge of tampering.

http://www.cbsnews.com/stories/2009/07/03/health/main5132012.shtml
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hepatitis C Under Diagnosed
Early Treatment Is Crucial

Steve Saunders, 7NEWS Anchor

DENVER -- The hepatitis C scare at Rose Medical Center has raised the profile of a disease that doctors say is under reported.

It is estimated that two percent of the population has the virus.

Steve Piper was diagnosed with the disease seven years ago. He believes he was infected with the virus as a teenager when he experimented with drugs.

He has since had liver cancer and a liver transplant, but is now doing well.

“It’s not a death sentence,” he said. “It’s a disease that is manageable, but you have to know that you have it.”

Dr. Gregory Everson of the University of Colorado Health Sciences Center specializes in liver disease and hepatitis C.

“It’s important not to bury your head in the sand,” he told 7NEWS.

About half the people with chronic hepatitis C respond to treatment. If that treatment begins early, patients have a much better outcome.

http://www.thedenverchannel.com/education/19943374/detail.html
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hospital worker may have exposed patients to Hepatitis C

DENVER, Colorado (CNN) -- A former hospital employee may have exposed hundreds, or even thousands, of surgical patients to hepatitis C after taking their fentanyl injections and replacing them with used syringes filled with saline solution, authorities say.

Kristen Diane Parker, who worked at Rose Medical Center in Denver, has admitted to secretly injecting herself in a bathroom and using unclean syringes as replacements for patients, investigators say.

She had hepatitis C, which she believes she contracted through using heroin and sharing dirty needles while she lived in New Jersey in 2008, authorities say.

She was a surgical technician at Rose from October 2008 to April 2009.

Nine patients who had surgery there during that time have tested positive for hepatitis C. Investigators are looking into whether they contracted the virus from Parker.

According to an affidavit filed by an investigator with the Food and Drug Administration, Rose Medical Center knew Parker tested positive for hepatitis C. She was counseled on how to limit her exposure to patients.

Parker quit after she was found in an operating room where she was not allowed to be. She subsequently tested positive for fentanyl. Hospital officials then contacted the DEA.
Parker is in federal custody facing three drug-related charges. If she is found to have done serious harm to a patient, she could face up to 20 years in prison. If a patient dies due to her actions, she could face life in prison.

In a statement to police, Parker said, "I can't take back what I did, but I will have to live with it for the rest of my life, and so does everyone else."

Her attorney could not be reached Friday.

Rose Medical Center is contacting 4,700 patients who had surgery at Rose during the time Parker was employed there. However, hospital officials do not believe that that many patients were exposed.

"We are taking a very conservative and cautious approach by contacting everyone who had surgery during this broad time period," a statement on the hospital's Web site states. "It is likely that most of the patients who receive letters will not have been exposed to hepatitis C."
Another 1,200 patients may have been infected between May 4, 2009, and July 1, 2009, when Parker worked at Audubon Ambulatory Surgical Center in Colorado Springs. Audubon is also contacting patients.

According to the Centers for Disease Control and Prevention, hepatitis C is a contagious liver disease that can lead to cirrhosis or liver cancer.

http://www.cnn.com/2009/CRIME/07/03/hospital.employee.arrest/
~~~~~~~~~~~~~~~~~~~~~~~~~~~
Questions mount about Hepatitis C as more details are released

Story By: John RomeroSource: KOAA

Thousands across the state may have been exposed to hepatitis c through alleged needle swapping by surgical tech Kristen Parker.

Dr. Donna Lanacone says out of all three types of hepatitis, C is by far the most serious and dangerous. “Hepatitis C is a virus that attacks the liver often silently.” she says, “The big difference is the fatality is higher and there is no vaccine.”

This silent killer can come without any symptoms at all and may not show for a number of years. “Most of the time there are no symptoms for 10-20 years.” explains Dr. Lanacone, “Some early symptoms you might see are low grade fever, fatigue, yellowing of the skin, which is called jaundice, abdominal pain, and some nausea and vomiting.” Hepatitis C can lead to cirrhosis, which is a scarring of the liver and is potentially fatal. It can also lead to liver cancer.

The virus that causes hepatitis c can be present for hours in blood even once it's dried. So it's a lot easier to catch than other blood-borne illnesses making testing that much more important.

“You should definitely get tested if there's any possibility of exposure to hepatitis c.” says Dr. Lanacone, “You do want to catch it as soon as you can. If you take the medications early enough can prevent some the of life threatening complications of hepatitis c.”

Both the Audubon Center and Rose Medical Center have set up free, confidential testing programs for patients who believe they may have been exposed. They say testing is not necessary for HIV or hepatitis b.

Audubon will begin sending letters to patients on July 6th, you can contact them at (719) 571-4440. If you have questions about contamination at Rose Medical Center, call the patient care line at (303) 329-7500.

http://www.koaa.com/aaaa_top_stories/x1974617906/Questions-mount-about-hepatitis-c-as-more-details-are-released

Peace
Pam
www.HEALSoftheSouth.org
www.myspace.com/figmento
http://360.yahoo.com/profile-ibMFv8Y3cqEGKgZVGFoxBHc-?cq=1
http://twitter.com/PSPam
http://www.facebook.com/PeachStatePam
http://pspamshepcjourney.blogspot.com/

Do YOU know about Hepatitis C?

2009-06-20T18:41:00.000-07:00

You can find all kinds of Hepatitis C information on the various nonprofit sites at:
www.hepcnetwork.org
MANY informative sites there.

There are TWO good Hep C books that can be read online.

Hepatitis C Choices can be found at:
http://www.hepcchallenge.org/choices/disclaimer.htm

The Georgia Hep C Handbook can be found at: http://www.healsofthesouth.org/Hep_C_Handbook.html

Both of the Handbooks are packed with information.
Arm yourselves with knowledge about your disease as you are your own best advocate!
Take Care!

2009-05-17T14:17:00.000-07:00

Tuesday, May 19th is World Hepatitis Day and I am reminding everyone on ALL my different groups that 1 in 12 people on this planet have some form of hepatitis! Are you the ONE in TWELVE? Don't take your status for granted. Get Tested! Especially for Hepatitis C!

You can learn the facts about Hepatitis A, B and C at:

www.aminumber12.org or www.nvhr.org

Please take the time on Tuesday the 19th of May to educate 12 others about hepatitis. Remind them to get vaccinated for Hepatitis A and B and to get tested for Hepatitis C!

Also please take a moment and check out my friend Kelly's "Living For A Change" video that was inspired by our sweet Kristina's "Dying For A Change" video. Awesome Kelly! Keep up the good work!
For those of you that don't know, Kristina sadly passed away at the young age of 32 from liver cancer from Hepatitis C on 2/21/09. She was an R.N., BSN and an inspiration and support to many over the years! She is greatly missed!

http://www.youtube.com/watch?v=Ep9eg9hIY9k is Kelly's video
http://www.youtube.com/watch?v=sOGrMR4bi3w is Kristina's video

You can also help H.E.A.L.S help others by donating to:
H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318
or through the paypal buttons at:
www.HEALSoftheSouth.org or www.HEALSoftheSouth.com
Also there is a paypal button on my My Space at www.myspace.com/figmento along with some facts about Hepatitis C! :-) THANK YOU!

We also have a My Cause on Facebook at:
http://apps.facebook.com/causes/192539/35241122?m=6987e7df

Take care of each other and take care of yourself! You are your most important advocate!

2 wonderful videos and a petition. Please check them out!

2009-05-11T21:06:00.001-07:00

2 wonderful videos and a petition. Please check them out!

Please check out Kelly's "Living For A Change" video that was inspired by our sweet Kristina's "Dying For A Change" video. AWESOME KELLY! Keep up the good work!

http://www.youtube.com/watch?v=Ep9eg9hIY9k

Also please join with me in signing her petition on behalf of HCV patients to the British Columbia Premier here: http://www.petitiononline.com/kodhep45/petition.html

AND Christopher Kennedy Lawford talks about Hepatitis C at
http://www.youtube.com/watch?v=LWjtMp5cYxk

Healing Hepatitis C,' a Book on the Epidemic's Front Lines

2009-05-11T20:55:00.000-07:00

Healing Hepatitis C,' a Book on the Epidemic's Front Lines with Best-Selling Author Christopher Kennedy Lawford & Dr. Diana Sylvestre

Healing Hepatitis C: A Patient and a Doctor Tell You How to Recognize When You Are at Risk, Understand Hepatitis C Tests, Talk to Your Doctor About Hepatitis C, and Advocate for Yourself and Others By: Christopher Kennedy Lawford with Dr. Diana Sylvestre

It is estimated that more than 4 million Americans and approximately 170 million persons worldwide have been exposed to Hepatitis C. Healing Hepatitis C remedies that by combining the personal story of Christopher Kennedy Lawford, who unknowingly contracted the virus during his years of drug use, with the medical expertise of Dr. Diana Sylvestre, who has devoted her career to treating hepatitis C sufferers. Together they deal with the stigma and misinformation, and the fears and frustrations of this illness.

New York, New York (PRWEB) May 7, 2009 -- Having hepatitis C can be a transformative, extremely tough experience, especially without the right information. Healing Hepatitis C remedies that by combining the personal story of Christopher Kennedy Lawford, who unknowingly contracted the virus during his years of drug use, with the medical expertise of Dr. Diana Sylvestre, who has devoted her career to treating hepatitis C sufferers. Together they deal with the stigma and misinformation, and the fears and frustrations of this illness.

Healing Hepatitis C serves as a valuable sourcebook for medical and treatment information: from what hepatitis C is to what it does, from what to expect during treatment to how to communicate with your physician, to finding the support you need. Most of all, it walks you through the process of facing the diagnosis and treatment head-on, showing you that "it is possible to get through hepatitis C--to be cured of it--without surrendering your life to it."

Together Lawford and Sylvestre offer hope, humor, and medical expertise to help patients, their friends, and families navigate the numerous challenges of hepatitis C virus education, testing, and treatment.

About the Authors

Christopher Kennedy Lawford

Christopher Kennedy Lawford has worked extensively in politics, government and the non-profit sector, most recently being appointed to the California Public Health Advisory Committee, as well as spending twenty years in the film and television business as an actor, lawyer, executive, and producer. As the author of the New York Times bestseller's Symptoms of Withdrawal: A Memoir of Snapshots and Redemption, and Moments of Clarity, Mr. Lawford illuminates his extraordinary life and the tragedies he has faced - offering a cohesive message of survival, hope, and inspiration. In his most rewarding role to date, Mr. Lawford is an advocate, for critical mental health issues facing our society today. His passion and commitment to the issues of substance abuse, hepatitis C and mental health has reinvigorated the debate around these vital national concerns. Mr. Lawford holds a Bachelor of Arts from Tufts University, a Juris Doctor from Boston College Law School and a Masters Certification in Clinical Psychology from Harvard Medical School where he gained an academic appointment as a Lecturer on Psychiatry.

Diana Sylvestre M.D. Dr.

Diana Sylvestre M.D. is a physician-researcher and faculty member in the department of medicine at the University of California, San Francisco. She is the executive director of the O.A.S.I.S. (Organization to Achieve Solutions in Substance-Abuse) in Oakland, California, and the president of the California Hepatitis Alliance. Her patient education workbook Hepatitis C: Get the Facts! has been distributed widely at no cost throughout the world.

Resources

Facebook- Healing Hepatitis C Group

http://www.healinghepc.com

# # #

Trackback URL: http://www.prweb.com/pingpr.php/VGhpci1TcXVhLVBpZ2ctVGhpci1TcXVhLUNvdXAtWmVybw==

See the original story at: http://www.prweb.com/releases/2009/05/prweb2392904.htm

World Hepatitis Day is May 19, 2009!

2009-05-11T20:53:00.001-07:00

World Hepatitis Day in Florida on May 19, 2009!

2009-05-07T23:00:00.000-07:00

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

Please Join the Find A Cure Panel for Hepatitis!

2009-02-17T23:37:00.000-08:00




Hello! As a valued friend of H.E.A.L.S of the South, you can make a difference! By joining Find A Cure Panel for people with Hepatitis, you will be empowered to share your opinions in vital research to help find a cure. What's more, for each survey you complete a minimum donation of $25 is made directly to H.E.A.L.S of the South on your behalf. Registering is fast, free, and your privacy is completely protected.
Click HERE to sign up now, and thank you for your continued support!

If you can't click on the link above please click HERE:

http://member.assistyourteamsurveys.com/AYTSM_RecruitmentEmail90.html

News Story done 15 years ago! A new blood scandal: hepatitis C

2008-09-07T21:18:00.000-07:00

Makes you realize how long this "unrecognized epidemic" has really been going on with the general public/media not paying a bit of attention yet we hear the words HIV at least once each hour every day. This news story was FIFTEEN YEARS AGO! Sadly, I don't see that *we* have made much progress!

Copy and paste the link into your browser to watch the video!
http://archives.cbc.ca/health/public_health/clips/4461/&ref=rss

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A new blood scandal: hepatitis C

Broadcast Date: Dec. 13, 1994

It's a familiar story: a deadly virus has infected the blood supply. Many people don't know they're infected until a number of symptoms prompt a test and a diagnosis. But this isn't AIDS: it's hepatitis C, which can lie dormant in the body for years before causing chronic infections, liver disease and death. A CBC documentary reveals that thousands of Canadians have the virus and don't know it.

The Canadian Red Cross is poised to recommend that anyone who received a blood transfusion before 1990 get tested for hepatitis C. Many observers wonder why the Red Cross doesn't seem to have learned anything from its experience with HIV in the early '80s — especially when steps could have been taken to slow the spread of hepatitis C.

A new blood scandal: hepatitis C

• Hepatitis is a virus that affects the liver.
There are several strains:
- Hepatitis A is a short-term treatable infection that can be spread in unsanitary conditions as well as through sexual contact.
- Hepatitis B is more serious since the infection lasts a lifetime and can cause cirrhosis of the liver, liver failure and death. It can be spread through unprotected sex, but there is a vaccine which can prevent it.
• Hepatitis C was only named in 1989 — before then, the virus was termed non-A, non-B hepatitis. Eighty per cent of carriers have no symptoms, and there is no vaccine. Between 75 and 85 per cent of carriers will eventually develop chronic infections and many will require a liver transplant. Hepatitis C is rarely spread through sexual contact; the main transmission method is through blood, such as reusing dirty tattoo needles or sharing needles when shooting drugs.

• For decades, administrators and users of the blood system had long been aware of the risks of transmitting hepatitis A and B through blood products. The presence of hepatitis was judged an acceptable risk by both the Red Cross and hemophiliacs.
• Even though public awareness of hepatitis C was low, the Krever Commission addressed it early in the inquiry. Hemophiliacs in particular were already aware of the threat it posed.
• An estimated 95 per cent of hemophiliacs who used blood products before 1990 contracted hepatitis C.
• About 300,000 Canadians have hepatitis C as of 2003. Estimates of how many contracted the virus through the blood supply vary wildly, from about 12,000 to over 60,000. The higher number is extrapolated from infection rates in the United States. Many people aren't aware they carry the virus, as it can lay dormant for years.

A new blood scandal: hepatitis C
Medium: Television
Program: Prime Time News
Broadcast Date: Dec. 13, 1994

Guest(s): Jenny Heathcott, Mel Lastman, Peter Lavigne, Arlene Steiner
Host: Pamela Wallin
Reporter: Leslie MacKinnon
Duration: 12:30
Last updated: Nov. 24, 2004

Copy and paste the link into your browser to watch the video!
http://archives.cbc.ca/health/public_health/clips/4461/&ref=rss

2008-08-01T20:21:00.000-07:00

Check out these wonderful Hep C videos!

These first four are new ones from the UK and are AWESOME!

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

http://www.youtube.com/watch?v=nkikoGnW6VM&feature=related

http://www.youtube.com/watch?v=NJWM0Ie_JHk

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

Also check out http://www.pinkonion.co.uk/
~~~~~~~~~~
Hepatitis C: Dying for Change!

http://www.youtube.com/watch?v=sOGrMR4bi3w&feature=related

Hepatitis C Epidemic in BC?

http://www.youtube.com/watch?v=9A4A1PkAElk

Short Survey on Lifestyles and College Students

2008-07-21T09:52:00.000-07:00

Lifestyles and College Students (Please pass forward to all college students!)

We need your help! We are inviting college students, ages 18-30, to take ashort online survey about lifestyles and attitudes.

The survey is anonymous and no identifying information is gathered. The results will be used to develop an educational health-related program for young adults. The online survey data will go into a secure, encrypted database only accessible tothe research team. At the end of the survey, you can request a form of proof that you completed the survey (for class credit if your professor provides extracredit).

For more information, please contact Dr. von Friederichs-Fitzwater atmarlene.vonfriederichs-fitzwater@ucdmc.ucdavis.edu

Thank you for your assistance in this important project.
Please go to http://www.hcri.com/CollegeSurvey to complete the survey.

World Hepatitis Day Action Alert

2008-05-17T23:07:00.000-07:00

Hepatitis C Advocates UNITED

World Hepatitis Day Action Alert

Flood Congress With Calls on May 19th and Demand Leadership!

The statistics are staggering: Hepatitis C is the most common, chronic blood-borne viral infection in the United States An estimated 5 million Americans (at least 1 in 50) have been infected with the hepatitis C virus.

Hepatitis C is the most common cause of chronic liver disease in the U.S. – and chronic liver disease is in the top ten killers for Americans 25 years of age and older The federal government's response:

A mere $17 million per year for all viral hepatitis programs President Bush has proposed a cut in hepatitis funding in next year's budget Legislation to mount a comprehensive fight against the disease has stalled

Angry? Want to make a difference? Make three phone calls on May 19th and demand that Congress take action!

How you can help:

On Monday, May 19th (World Hepatitis Day), call your U.S. House Representative and two U.S. Senators in their Washington, DC office. Ask to speak to the staffperson who handles health care issues. You might speak to this person live or you might get voicemail. Deliver the following message:

"My name is __________ and I live in (your city/state). Today is World Hepatitis Day and I urge Representative/Senator ____________ to take a leadership role in the fight against the hepatitis C epidemic. An estimated 5 million Americans have been infected with the hepatitis C virus, but the federal government has not provided adequate funding or legislation to fight the epidemic. I urge the Representative/Senator to help change this situation by supporting $50 million for viral hepatitis programs in the Fiscal Year 2009 appropriation bill and by cosponsoring the "Hepatitis C Epidemic Control and Prevention Act."

You can reach your Senators and Representative by calling the Capitol switchboard toll-free at (800) 828-0498. If that number is busy, call (202) 224-3121. Ask to be connected to your Representative or Senator. If you don't know who represents you in Congress, go to www.congress.org and enter your zip code in the upper left corner.

*If you are unable to call on May 19th, please call no later than Friday, May 23rd.

If your Representative/Senator is on the following list, he or she has already cosponsored the "Hepatitis C Epidemic Control and Prevention Act." Please thank them and ask that they work to get other cosponsors.

House cosponsors:
Neil Abercrombie (HI)
Brian Baird (WA)
Shelley Berkley (NV)
Timothy Bishop (NY)
Elijah Cummings (MD)
Keith Ellison (MN)
Bart Gordon (TN)
Raul Grijalva (AZ)
John Lewis (GA)
Jim McDermott (WA)
James McGovern (MA)
Michael McNulty (NY)
Gregory Meeks (NY)
Ed Pastor (AZ)
Donald Payne (NJ)
Jim Ramstad (MN)
Edolphus Towns (NY)
Henry Waxman (CA)
Robert Wexler (FL)
Heather Wilson (NM)

Senate cosponsors:
Joe Biden (DE)
Barbara Boxer (CA)
Maria Cantwell (WA)
Thad Cochran (MS)
Kay Bailey Hutchison (TX)
Daniel Inouye (HI)
Tim Johnson (SD)
Ted Kennedy (MA)
Frank Lautenberg (NJ)
Mark Pryor (AR)
Gordon Smith (OR)
Olympia Snowe (ME)
Ron Wyden (OR)

Please forward this Alert widely! Thanks for making a difference!

For more information about this Alert, contact Ryan Clary at rclary@projectinform.org 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. We communicate through a moderated listserv and monthly conference calls. Hepatitis C Advocates UNITED! was formed by the Hepatitis C Appropriations Partnership (HCAP) and the National Hepatitis C Advocacy Council (NHCAC). 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.

Kelly's Lot Sheds Light on Hepatitis C in Belgium

2008-05-10T22:42:00.000-07:00

Kelly's Lot Brings "The Light" to Europe AND SHEDS A LIGHT ON HEPATITIS C

First new STUDIO CD in Eight Years from National Spokesband for HepCAware.org (Los Angeles, CA): After spending almost a decade as National Spokesband for the Hep C Awareness campaign in the U.S., Kelly's Lot now brings its good works and good music to Europe. The band is on the road in support of the roadhouse rock & blues release "The Light," their first new studio CD in eight years.

The last show of their trip will be dedicated to raising awareness of hepatitis C. Formed in 1996, Kelly's Lot, who has toured all over the USA has decided to cross the Atlantic ocean to play in Belgium and France. Honored with the "Best Blues Band" award by Rock City News and named one of the Top 13 bands in the U.S. by Independent Songwriter Magazine, the band is ready to expand it's reach. For this first trip abroad they decided to trim down to an acoustic trio which includes Kelly Z on vocals, Perry Robertson on guitar and Linda Moss on harmonica. No worries, the trio packs a punch comparable to the full band. Built on a solid Blues/Rock foundation, Kelly's Lot plays Americana music with a slightly Alternative edge. Having a voice compared to Melissa Etheridge and Janis Joplin but ultimately all her own, Kelly brings emotion, energy and excitement to every performance. Kelly Z recorded her first demo CD, "Kelly's Lot", with J. Peter Robinson, former keyboard player for Phil Collins and The J. Geils Band. The next recording "Kelly's Lot-Live at the Troubadour" was their first of 3 Live CDs which put the band on the map as a band to see live.The band's first official release, "Test Drive," was produced by Robertson, bringing in friends like Scott Sanders to mix and Phil Morales to create the enhanced part of the CD and a music video of the band's remake of Melanie's "Brand New Key" directed by Catherine Hardwicke (Thirteen, Nativity Story) The next live CD "Get Hip To Hep C", began the band's official work with a national campaign to raise awareness about Hepatitis C including Kelly's founding of HepCAware.org.

Kelly's Lot has been involved in raising awareness of Hepatitis C since 2000 after lead singer Kelly Z lost a close friend to the virus. Their last 2 CDs were the live acoustic "Trio" and the full band EP, "Come To This." Their new release "The Light" was recorded at EarCandy Studios, the company responsible for the sound behind Juno, Lars and The Real Girl and Rambo 4.

Los Angeles-based Kelly's Lot weaves blues and roadhouse rock into a passionate combination. Selections from their diverse selection of original songs, form a dynamic set of sometimes mellow and moody; sometimes raucous and radiant; but always soul-searching lyrics.

May 7th @ L'OUZERI 10pm 32, rue souverain 4000 Liege (Luik), BELGIUM
May 8th @ Heksenketel 9pm Pelgrimsstraat, 22, 2000 Antwerpen, BELGIUM
May 9th @ Bar Belge 9pm-12am av du General Leclercq, 94700 Maisons Alfort, FRANCE
May 10th @ Indigo Studios 8pm 96 rue de la Victoire, 1060 Bruxelles, BELGIUM
May 11th @ BP Cafe 7pm Raising Awareness of Hepatitis C Gemeenteplein, 3, 2640 MORTSEL, BELGIUM
For Interviews, More Information:
Tom Kidd/Pres Pak Public Relations
PrespakPr@earthlink.net
kellyslot@aol.com 310-377-2527
cell 310-433-6734

http://www.einnews.com/pr-news/10172-kelly-s-lot-sheds-a-light-on-hepatitis-c-in-belgium

World Hepatitis Day on May 19, 2008

2008-05-10T22:41:00.000-07:00

WORLD Hepatitis Awareness Day in Florida will be MAY 19, 2008! Mark your calendars NOW and click on this link to see the agenda of speakers! Hope to see you there! :-)

Why the World should ask AM I NUMBER 12? Click on the link to find out why and come to the Capital in Tallahassee on May 19th!

Why The World Should Ask ‘Am I Number 12?’

2008-05-01T02:43:00.000-07:00

Why The World Should Ask ‘Am I Number 12?’

More than 200 patient groups launch global viral campaign

http://www.aminumber12.org ● http://www.suis-jelenumero12.org ● http://www.souonumero12.org http://www.sonoioilnumero12.org ● http://www.soyelnumero12.org ● http://www.rakam12.org

Thursday 24 April, 2008 – The World Hepatitis Alliance and over 200 patient groups around the world are asking ‘Am I Number 12?’ (http://www.aminumber12.org) to increase awareness of the shocking statistic that one in 12 people on the planet are living with hepatitis B or hepatitis C and yet the majority of those infected are unaware.

Three weeks ahead of World Hepatitis Day on Monday 19 May, the World Hepatitis Alliance is launching a viral campaign aimed at getting people talking about the fact that approximately 500 million people globally are living with either hepatitis B or C. The World Hepatitis Alliance is asking people to sign-up to http://www.aminumber12.org to show support for the campaign but also to receive valuable information about a disease that kills some 1.5 million people a year.

The ‘Am I Number 12?’ campaign has already kicked off in 55 countries and high-profile campaigns are being coordinated from Sydney to Serbia and from Beijing to Buenos Aires. Charles Gore, President of the World Hepatitis Alliance, said that with 1.5 million people dying every year, chronic viral hepatitis could no longer be ignored. “Through the ‘Am I Number 12?’ campaign and activities around the world on 19 May we aim to put hepatitis B and C firmly on the global healthcare agenda,” Mr Gore said.

In Tallahassee, we will be having our first World Hepatitis Day at the Capital on May 19th from 9am to 1pm. There will be many educational booths on the first floor and in the Courtyard with a press conference on the old Capital steps at 10:30am. The State of Florida Health Department will be actively participating and the CDC will be issuing a statement. We feel this is a very important and critical issue since 1.25 million people are living in the U.S. with Hepatitis B (which is vaccine preventable!) and 4 million in the U.S. have Hepatitis C - but they just don’t know it yet. (There is not a vaccine for Hepatitis C). We urge everyone to Know Their Status and Get Tested for Hepatitis C!

Mr Gore said that, unlike other disease areas, awareness of hepatitis B and C remains inexplicably low: “We believe that, unless awareness improves, we won’t make any progress in reducing the enormous and largely preventable death toll. Hepatitis B and hepatitis C should have the same profile as HIV/AIDS, malaria and TB and should really be up there alongside those diseases in the WHO’s millennium goals.”

Did You Know?

o 500 million people worldwide are currently infected with hepatitis B or C
o This is over 10 times the number infected with HIV/AIDS
o Between them, hepatitis B and C kill 1.5 million people a year
o One in every three people on the planet has been exposed to either or both viruses
o Most of the 500 million infected do not know

World Hepatitis Day
World Hepatitis Day will be observed on Monday 19 May and marks a brand new, entirely patient-led initiative. The day has been launched in response to the concern that chronic viral hepatitis has nowhere near the level of awareness nor the political will to tackle it that is seen in HIV/AIDS, TB and malaria. This is despite the fact that the numbers chronically infected with, and annually killed by, hepatitis B and C viruses are on the same scale. ‘AM I Number 12?’ campaign materials are available in over 40 languages – for logo images, postcards, posters and banner ads please contact the World Hepatitis Alliance at worldhepday@fleishman.com

World Hepatitis Alliance
World Hepatitis Day is being coordinated by the World Hepatitis Alliance, a newly established Non-Governmental Organisation which represents more than 200 hepatitis B and hepatitis C patient groups from around the world. The World Hepatitis Alliance is governed by a representative board of patient groups from seven world regions: Europe, Eastern Mediterranean, North Africa, North America, South America, Australasia & Western Pacific. For more information visit http://www.worldhepatitisalliance.com on Monday 19 May.

Contact Information:
International :
Raquel José
T: +44 (0) 2070896220
E: raquel.jose@worldhepatitisday.org

United StatesPam Langford
T : 850-443-8029
E : figment@nettally.com
http://www.HEALSoftheSouth.org

Georgia Hepatitis C Handbook announcement!

2008-03-14T23:46:00.000-07:00

The Hep C Working Group of Georgia, a coalition of agencies dedicated to battling hepatitis C in Georgia, is extremely pleased to announce that the Second Edition of the Hep C Handbook, a publication written and designed expressly for Georgians living with hepatitis C, as well as professionals who work with Georgia’s Hep C patients, is hot off the press and available now. The first edition was published in 2005 and it proved to be an invaluable resource to Georgians and those in the surrounding states who were battling hepatitis C. There have been many changes since 2005 and the time was right for an updated handbook to help those who needed it. While not a substitute for qualified medical care from a licensed physician, the Hep C Handbook contains extensive information to aid those affected by hepatitis C including physician referrals, physical and mental heath, legal resources, treatment options, transplant and financial resources information as well as many other areas of information, all available to citizens of Georgia. This project was a labor of love for the organizations involved in developing this up-to-date informational resource. The Georgia Division of Public Health, the American Liver Foundation, Atlanta Harm Reduction Center, H.E.A.L.S. of the South, as well as our dedicated physicians and committee members all made this dream a reality and it is through our collective effort that the second edition of this book has come to fruition.

Appreciation goes out to those companies and organizations providing funding for printing costs making the Hep C Handbook possible. Lead supporters were Roche Laboratories, Valeant Pharmaceuticals, Vertex and GlaxoSmithKline. Through their generosity we were able to print 15,000 copies of the handbook and we cannot express our appreciation enough for their kindness.

In addition to the handbook being in print form it is also available in PDF format on the American Liver Foundation website at:
www.liverfoundation.org/chapters/georgia

and the H.E.A.L.S of the South website at:
http://www.healsofthesouth.org/Hep_C_Handbook.html

If you are interested in receiving these books for yourself or others who are in need, please contact:

Katherine C. Cline
Executive Director
American Liver Foundation
2250 North Druid Hills Road, Suite 285
Atlanta, GA 30329
telephone: 404-633-9169
www.liverfoundation.org/chapters/georgia

OR

Tina J. Benoit, MPH
Hepatitis C Coordinator & Surveillance
Georgia Division of Public Health/Notifiable Disease Epidemiology Section
2 Peachtree Street, NW 14-264
Atlanta, GA 30303
(404) 463- 0849 (Phone)
(404) 657- 2608 (Fax)tbenoit@dhr.state.ga.us

Two Musicians who CARE about Hepatitis C!

2008-02-17T18:13:00.000-08:00

If you're not a *My Spacer* this might be the perfect opportunity to check it out! My Space links for both musicians provided.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Two Musicians who CARE about Hepatitis C. Let's support them and show that we care! Besides - they both have WONDERFUL MUSIC!!

Alejandro has Hepatitis C and keeps it in the news for us and Kelly lost a friend to Hepatitis C and continues to do a wonderful job advocating for us!

Alejandro Escovedo’s New Album: Real Animal Real Animal, Alejandro Escovedo's 9th solo album and follow-up to 2006's critically-acclaimed The Boxing Mirror, will be released on June 10, 2008. Produced by Tony Visconti (David Bowie, T.Rex, Thin Lizzy), Real Animal is a collective journey through Escovedo's various musical incarnations from punk rock to string quintets and is as introspective as it is retrospective. Recalling the people, places and influences that helped shape his career, Real Animal represents the primitive aspect of Escovedo's music - the instinct, the urgency and a survivor mentality that fueled his passion.

http://www.myspace.com/alejandroescovedo

~~~~~~~~~~~~~~~~

Kelly’s Lot
April, 11 2008 at CD RELEASE AT THE MINT Pico and Crescent Heights, Los Angeles, California
Cost : 10 7-9pm Free CD with Admission.

HERE's A RECENT REVIEW ON OUR LATEST CD "COME TO THIS" Kelly's Lot is an electric mix of styles firmly built on a Blues/Rock foundation. It is Americana music with a slightly Alternative edge! They burn an incredible show with guitars, sax, bass and drums. Having a voice all her own, Kelly brings emotion, energy and excitement to the table (and, what a feast it is). The musicianship is fantastic and shines through in a variety of ways, taking the audience to a different place with each song. It’s a musical treat for fans and newcomers alike. The songs speak of life’s hard knocks and love’s bittersweet moments. Packed with musical power players and fronted by an equally powerful singer, reminiscent of Janis Joplin and Melissa Etheridge. A superb front-person, remarkable back line and good sound - I think you'll like it. - DWM Music

http://www.myspace.com/kellyslot
http://www.myspace.com/hepc
~~~~~~~~~~~~~~~~

and you can check out My Space at www.myspace.com/figmento

ACTION ALERT Recent Transmission of Viral Hepatitis C and HIV to Four Transplant Patients Underscores Prevalence

2007-11-23T17:26:00.000-08:00

Action Alert
Recent Transmission of Viral Hepatitis C and HIV to Four Transplant Patients Underscores Prevalence

Urge Congress to Support H.R. 2552 and S. 1445, the Hepatitis C Epidemic Control and Prevention Act

The News…

The news of four transplant recipients contracting Viral Hepatitis C (HCV) and HIV underscores the prevalence of HCV in the United States.

While contracting HCV from organ donations is rare, prevalence of HCV is not. HCV is the most common blood-borne, chronic viral disease in the United States, with an estimated 5 million Americans having been infected with HCV.

What Can I Do?

Call your US Representative and Senator and tell whoever answers the phone:

Educate them about Viral Hepatitis C (HCV) and the need to address the growing epidemic.

§ HCV is the most common, chronic, blood-borne viral infection in the United States.
§ Chronic liver disease is among the top ten killers of Americans 25 years of age and older. Hepatitis C is the most common cause of chronic liver disease in the U.S. accounting for 40-60% of all cases.
§ HCV-related end-stage liver disease is a leading cause of death among people coinfected with HIV.
§ Without intervention, the hepatitis C epidemic is expected to result in 3.1 million years of life lost by 2019. The projected direct and indirect costs of the current HCV epidemic, if left unchecked, will be over $85 billion for the years 2010 through 2019.

What Can Congress Do?

Urge the Representative or Senator to vote to cosponsor HR 2552 and S 1445, the Hepatitis C Epidemic Control and Prevention Act.

§ This bill that would establish a comprehensive federal hepatitis C research and prevention program.
§ This bill also provides increases for other vital health and social service programs.
§ Congress can’t turn its back on people who rely on these programs to stay healthy and productive.

Ask that once they have had a chance to review the bill and cosponsor it, respectfully ask that any follow up (in writing) about their decision of whether or not to join as a cosponsor for this important bill.

You can call your Representative toll-free at 1-800-614-2803. You will get the Capitol Switchboard. Ask to be connected to your Representative or Senator’s office. If you don’t know who they are, just go to www.house.gov or www.senate.gov and enter your zip code in the upper left corner.

Thank you for taking action!
.
Marcus Peterson, Government Relations Program Associate
National Alliance of State & Territorial AIDS Directors
444 North Capitol Street, NW, Suite 339, Washington, DC 20001
Phone: (202) 434-8003 Fax: (202) 434-8092
mpeterson@nastad.org www.nastad.org
"Bridging Science, Policy, and Public Health"

Apalachicola FL Native a Victim of Hepatitis C

2007-08-12T23:00:00.000-07:00

Apalachicola FL Native a Victim of Hepatitis C
July 5, 2007

Apalachicola native, Ron Wilson, 51, of Tallahassee underwent a liver transplant at Shands Transplantation Center in Gainesville, FL on May 16. Wilson is the victim of Hepatitis C (hep C) a little known form of viral hepatitis.

A small nonprofit in Tallahassee, H.E.A.L.S of the South (Hepatitis Education Awareness and Liver Support) is willing to help collect funds towards Ron's medical expenses. Please send your tax deductible $$ to:

H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318

Please mark for *Ron's Transplant Fund* as these will be kept separately.

For more information about Wilson or hepatitis C visit the following website www.HEALSoftheSouth.org or call Pam Langford, President of H.E.A.L.S 850-443-8029.

Wilson's surgery and convalescence will cost about half a million dollars. Four hundred thousand for the surgery and one hundred thousand for the antirejection drugs he will take for the rest of his life.

Hep C has been referred to as a *silent epidemic*. Millions have the condition but many of them are not aware of it because they may not experience symptoms for decades after they are infected. Hep C is diagnosed ten to forty years after it is contracted on the average. That's a big reason why hepatitis testing and treatment are so important.

According to the National Institutes of Health:
Approximately 1.8% of the U.S. population or 3.9 million Americans have been infected with the Hepatitis C virus.

About 35,000 new cases of hep C are estimated to occur in the United States each year.

Chronic hep C is now the most common reason for liver transplantation and the leading cause in the U.S. for developing liver cancer.

Hepatitis C patients outnumber HIV patients about 5 to 1 yet very little is known by the general public about the differences between Hepatitis A, B, C, D, E and G. There is not a vaccine for Hepatitis C (there is for Hep A and B) and most people do not have any symptoms until they reach the end stages (cirrhosis) of the disease. It is a slow progressing disease so most people are not even aware they have it until it reaches cirrhosis which can then lead to liver cancer, liver transplantion, and/or death. About 5 million people in the United States have this disease and 4 million do not know it! Risk factors for hep C include the following:

* received a blood transfusion or solid organ transplant before July 1992
* were notified that you received blood from a donor who later tested positive for hepatitis C.
* have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs)
* were a recipient of clotting factor(s) made before 1987
* have ever been on long-term kidney dialysis
* have had tattoos or body piercings
* had sexual activity that involved contact with blood
* have had vaccinations administered with pneumatic jet injectors
* are a veteran (especially Viet Nam)
* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person
* are a health care worker exposed to needle sticks or first responders
* also 5%-10% of babies born to infected mothers will get Hepatitis C
* have ever been incarcerated

A picture of Ron, his mother and father were in the newspaper article.

Written by Lois Swoboda, The Times, Franklin County's source of news for more than a century

GET TESTED for Hepatitis C!

2007-08-10T21:03:00.000-07:00

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, Nurse, etc.)

Hepatitis C patients outnumber HIV patients FIVE TO ONE! Please help get some badly needed funding! Read about Hepatitis C Epidemic Prevention and Control Act at: http://hepcchallenge.org/S521.htm

Write your Senator in 1 minute at: http://hepcchallenge.org/resourcecenter1.htm

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 we have recently changed the name to H.E.A.L.S of the South. We have websites at http://www.HEALSoftheSouth.org , http://www.HEALSoftheSouth.com , and http://www.HEALSofNGA.org
Stop by and visit!

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

Peace and Love

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

The Cost of a Human Life!

2007-05-13T23:28:00.000-07:00

The Cost of a Human Life!

Today I learned the cost of a human life. Apparently it is *only* about $3000. Not much to many but unobtainable for some. I would like to share a story about my friend Ron Wilson and his fight for life and the $3000 that is standing between him and a new liver which he desperately needs caused by Hepatitis C. Ron is an African American male, will be 50 in a few weeks, with a wife Valerie and 5 children, 1 grandchild (and looking forward to many more grandchildren), who has worked hard all his life and who wasn't diagnosed soon enough with his Hepatitis C (there are not any symptoms!) and then fell through the cracks because he currently only has Medicaid and wasn't able to get some of the vital tests that insured HCV patients receive. When he was diagnosed 2 years ago he was never even told there was a treatment for Hepatitis C (50 to 80% effective if done soon enough and all Pharmaceutical Companies have patient assistance programs for most meds!) He will be on Medicare 2 years after the date he was found disabled but that was only a short while ago that he finally received his SSDI (another long drawn out process that needs to be revisited). Doctors and Hospitals take a little better care of Medicare patients than they do Medicaid patients I am learning and even better care of heavily insured patients. Ron still has more than a year to wait for that date when he finally gets his Medicare and this man has only weeks or months to live. He worked hard all his life and because Hepatitis C is a silent disease it just wasn't diagnosed soon enough for him to do anything except try to get a liver transplant.

Several months ago Ron started going in and out of the hospitals for various and sundry problems that were starting to happen. He was encouraged by the Hepatitis Support Group to seek a transplant center and was eventually able to do so. He went through a week of tests to see if he would qualify for a liver transplant. There is a system used to judge whether you are medically ready for a transplant or not. Ron has one of the highest scores of any patient most of us have heard about. He needed his transplant last week, last month, actually last year. After several trips to and from the transplant center he was finally told that he successfully completed and passed all their tests but would need to put a deposit of $3000 towards the liver transplant BEFORE the transplant center would even put him on the list. While I realize that this world revolves around $$, who has them and who doesn't, it just seems to me such a shame that the transplant center didn't even talk to the family about payment arrangements of some type but simply said $3000 or we can't put you on the list. This seems a little like holding a liver *hostage* as if some ransom had to be paid! I know that these transplant teams truly put their hearts and souls into this process and that not everyone will be able to get a transplant for whatever organ they might need but I feel the need to reach out to the Tallahassee Community at large and help me help my friend Ron. He is a very loving husband, father of 5, and grandfather of 1 (and hoping for more!), with a daughter serving in Iraq and deserves a chance at life! PLEASE help my friend!

A small nonprofit in Tallahassee is willing to help collect funds towards Ron's medical expenses. Please dig deep into your pockets and send your tax deductible $$ to:

H.E.A.L.S of the South (Hepatitis Education Awareness and Liver Support)
PO Box 180813
Tallahassee, FL 32318

Please mark for *Ron's transplant fund* as these will be kept separately.

Please keep Ron in your prayers and please get tested for Hepatitis C as the sooner you find out you have it the sooner you can make lifestyle changes, seek medical attention and possible treatment. Doctors do not automatically check for it on annual physicals as most people believe. Get Tested for Hepatitis C! Get Vaccinated for Hepatitis A and B!

Let me give you a little background about Ron's disease - Hepatitis C. Hepatitis C is the most common chronic blood borne virus in the United States today. It is spread by blood to blood transmission. It is the leading cause of liver transplants. 2/3 of patients waiting for a liver transplant will die because there are not enough organs to go around (Please remember to sign your donor cards and tell your family your wishes!) Ron found the local Tallahassee Hepatitis Support Group to seek education and support for his Hepatitis C about 6 months ago but by then he was already too far along to help him with very much. The Support Group did help educate him to seek medications for what we call *brain fog* which is when the liver becomes cirrhotic and ammonia backs up in the liver which then goes to the brain that can cause those with HCV to become confused and they can lapse into a coma - sometimes coming back out of the coma and sometimes not. Ron has already been in several brief coma's. He would have never been put on that medication if the Support Group hadn't insisted he talk to his Doctor about it. He might have already passed away but he is getting wonderful emotional support from his family, friends, Church, and the Hepatitis Support Group and is keeping a positive attitude and is on prayer lists all over the world! I just wanted to add something about how important Support Groups are for education and support no matter what disease you are dealing with. Educate yourselves about YOUR disease as knowledge is power!

Hepatitis C patients outnumber HIV patients about 5 to 1 yet very little is known by the general public about the differences between Hepatitis A, B, C, D, E, and G. There is not a vaccine for Hepatitis C (there is for Hep A and B) and most people do not have any symptoms until they reach the end stages (cirrhosis) of the disease. It is a slow progressing disease so most people are not even aware they have it until it reaches cirrhosis which can then lead to liver cancer and/or liver transplant. About 5 million people in the United States have this disease and 4 million do not know it! Please consider these risk factors and remember it only takes some type of blood to blood transmission to spread this disease and please ask your doctor to test YOU if you have any of these risk factors:

* received a blood transfusion or solid organ transplant before July 1992* were notified that you received blood from a donor who later tested positive for hepatitis C. * have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs) * were a recipient of clotting factor(s) made before 1987 * have ever been on long-term kidney dialysis * have had tattoos or body piercings * had sexual activity that involved contact with blood* have had vaccinations administered with pneumatic jet injectors* are a veteran (especially Viet Nam)* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person * are a health care worker exposed to needle sticks or first responders* also 5%-10% of babies born to infected mothers will get Hepatitis C* have ever been incarcerated

Thank you for listening and reading.

Peace
Pam Langford

For information and support for anyone interested in Hepatitis C please visit the Tallahassee Hepatitis Support Group on the first Monday of every month, TMH Diabetes Center, 7 to 9 PM, 1981 Capital Circle NorthEast, or contact Susan at Susan.cason@tmh.org or Pam at figment@nettally.com 850-443-8029

PSPam's Hep C Journey

NVHR/NASTAD meeting in DC October 2011~

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

World Hepatitis Day July 28, 2011

Killing Us Softly: What Americans Don't Know & Why It Will Kill Them

You can listen to replay of FDA Teleconference on Boceprevir and Telaprevir

FDA OKs Telaprevir for Hep C

NVHR Commends New HHS Plan for the Prevention and Treatment of Viral Hepatitis

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

My Birthday Wish (63 this year and holding - about 40+ years with the dragon!)

Hepatitis C - The Basics

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

Hepatitis Health Action! The Hepatitis Community Responds to Health Care Reform

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

NVHR: Administration's 2012 Budget Proposal Represents 'Sea Change'

Happy Holidays from H.E.A.L.S of the South!

NVHR Welcomes Dr. Koh’s Remarks at AASLD, But Warns that Viral Hepatitis Battle Demands Decisive National Leadership

NVHR: In Fighting for ‘Six Winnable Battles,’ CDC May Lose the Nation’s Overall Public-Health War

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

Kerry Introduces Bill to Fight Viral Hepatitis

Webinar: Hepatitis Advocacy in August

World Hepatitis Day in Washington DC on May 19, 2010

Advocates Rally in San Francisco and Washington to Raise Awareness and Demand Funding for Hepatitis B an C

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

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

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

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

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

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

Please Help H.E.A.L.S of the South Help Others with Hepatitis

Rep. Hank Johnson: I Have Hepatitis C

Viral Hepatitis and Liver Cancer Prevention and Control Act of 2009

HCV Awareness: Harlem Hepatitis C Task Force Meeting Highlights

Tech May Have Exposed Thousands to Hep C

Do YOU know about Hepatitis C?

2 wonderful videos and a petition. Please check them out!

Healing Hepatitis C,' a Book on the Epidemic's Front Lines

World Hepatitis Day is May 19, 2009!

World Hepatitis Day in Florida on May 19, 2009!

Please Join the Find A Cure Panel for Hepatitis!

News Story done 15 years ago! A new blood scandal: hepatitis C

Short Survey on Lifestyles and College Students

World Hepatitis Day Action Alert

Kelly's Lot Sheds Light on Hepatitis C in Belgium

World Hepatitis Day on May 19, 2008

Why The World Should Ask ‘Am I Number 12?’

Georgia Hepatitis C Handbook announcement!

Two Musicians who CARE about Hepatitis C!

***ACTION ALERT*** Recent Transmission of Viral Hepatitis C and HIV to Four Transplant Patients Underscores Prevalence

Apalachicola FL Native a Victim of Hepatitis C

GET TESTED for Hepatitis C!

The Cost of a Human Life!

ACTION ALERT Recent Transmission of Viral Hepatitis C and HIV to Four Transplant Patients Underscores Prevalence