May is Hepatitis Awareness Month. kNOw more hepatitis!

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

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

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

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

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

Hepatitis C Action Alert!

Action Alert:

Urge Members to Include Viral Hepatitis Funding in Programmatic Requests

 

 

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

 

In the next week and a half, all Senators and Representatives will write their "programmatic appropriations request letters," which ask members of the Appropriations Subcommittees (who put together the federal funding

legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2014.

 

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

 

Additionally, the CDC released FY2012 Grant Funding Profiles by state, here http://wwwn.cdc.gov/FundingProfiles/FundingProfilesRIA

When you click on your state and "Generate Report," your state's viral hepatitis funding is included in the report.

 

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

 

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

 

2.   Call the Members' Offices to get the name and correct spelling of

their health staff person.  Email the staff using the draft email text below.  House staff emails are First.Last@mail.house.gov

john.smith@mail.house.gov

Senate staff emails are

First_Last@Last name of Senator.Senate.gov

( john_smith@doe.senate.gov

 

Sample email:

 

Your Name

State and Zip code

 

Dear (Name of Health Staffer):

 

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

 

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

 

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

 

Thank you again for consideration of my request.

 

Your Name

 

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

 

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

GET TESTED for Hepatitis C!

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, Registered Nurse, Licensed Practical Nurse, etc.)

Hepatitis C patients outnumber HIV patients FIVE TO ONE! 1 in 12 in the world have some form of hepatitis! www.aminumber12.org

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 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!

Peace and Love

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

EIU report highlights low awareness of hepatitis C

EIU report highlights low awareness of hepatitis C

World News | January 18, 2013

Kevin Grogan

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

The report, funded by Johnson & Johnson's Janssen unit, speaks of the "urgent need for countries around the world to develop strategies to tackle head-on the growing social and economic issues associated with HCV".

While the total number of infected individuals is unknown due to a lack of available data, the World Health Organisation estimates that 150 million people globally are currently living with the blood-borne infectious disease and up to two-thirds will develop chronic liver disease.


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


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


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


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

Links

www.janssen-emea.com

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

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

USPSTF Action Alert!

Action Alert

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

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

Calling on USPSTF to Change Its Hepatitis C Recommendation

Updated - January 3, 2013

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

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

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

How you can help:

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

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

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

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

Thank you for taking the time to make a difference!

For more information, contact info@nvhr.org

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

Dear Colleague,

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

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

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

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

Sincerely,

Michael Honda                      Hank Johnson
Member of Congress             Member of Congress

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

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

December ____, 2012


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

Dear Dr. Moyer,

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

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

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

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

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

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

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

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

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

Sincerely,

Michael Honda                Hank Johnson
Member of Congress       Member of Congress



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


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


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

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

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

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

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

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

Name of organization
City, state
Contact person

Sign-on letter:

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

Dear Dr. Moyer,

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

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

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

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

Sincerely,


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

WRESTLING THE MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY

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

WRESTLING THE  MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY

Why Hepatic Encephalopathy (HE)?

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

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

What will HE destroy next for these patients?

http://www.hesback.com/

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

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

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

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

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

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

Martha Saly
Director
National Viral Hepatitis Roundtable

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

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

 

From the ALF:   Check out the special Hep C and Liver Health insert that was in the Washington Post!! Make sure you click on the link to read the publication, which features an interview with our CEO Donna Cryer, as well as features on our Tune in Spokesperson Superstars Natalie Cole, Gregg Allman, and Jon Secada! http://bit.ly/Pcj32o   or

 

http://doc.mediaplanet.com/all_projects/11021.pdf

 

Congressman Hank Johnson is pictured with the President.   He treated for several years before finally clearing the virus!

World Hepatitis Day in Tallahassee, FL

Do you live in or near Tallahassee, FL?   If so, please join  us on July 28th for World Hepatitis Day where we will act out "see no evil, hear no evil, speak no evil" for a group photograph bringing awareness to the fact that hepatitis is being ignored all over the world.    It will be at the Senior Center, 1400 N. Monroe St, 2nd floor Auditorium.   Check in from 9:45am to 10:45am and photo at 11am.  You can view the flyer at:
http://peachstatepam.healthblogs.org/2012/07/16/world-hepatitis-day-in-tallahassee-fl/     For some reason, I no longer have an *insert picture* area here.   Hope to see you there!

Still think Hepatitis isn’t important enough for everyone to learn about?

One-third of world has hepatitis: WHO report

By David W Freeman

The World Health Organization hopes posters like these will help raise awareness of hepatitis

(CBS) Hepatitis takes a huge toll on health. More than two billion people - roughly one-third of the entire world population - is infected with one of the viruses that causes the potentially deadly liver disease, according to a new estimate from the World Health Organization.

Tragically, most people infected with one of the viruses that cause hepatitis don't know they're infected. That increases the risk that they will unwittingly transmit the virus to other people.

And if regular folks don't understand much about the risks posed by hepatitis, neither do politicians.

"This is a chronic disease across the whole world, but unfortunately there is very little awareness, even among health policy-makers, of its extent," Steven Wiersma, a hepatitis specialist with the organization, said at a press conference, Reuters reported.

What does everyone need to know about hepatitis?

There are five main viruses capable of causing hepatitis, which doctors designate using the letters A, B, C, D, and E. The viruses causes different symptoms and spread in different ways, including via contaminated water and food as well as blood and semen. Hepatitis B and C are particularly worrisome, as they can lead to chronic disease and are the most common causes of liver cirrhosis and liver cancer. The CDC has more on hepatitis. (Credit: World Health Organization)

Subject: Confidential Online Survey for those with Hep C/Genotype 1

Subject: Confidential Online Survey for those with Hep C/Genotype 1

A $25 donation made to HEALS for taking the survey

FACP /HEALS of the South Find a Cure Panel specializes in patient research for serious diseases including Hep C.

And they have a current anonymous online survey for those who Hep C.

To qualify you must:

1) Have HEP C – have a current diagnosis (ie. NOT cured the virus)

2) Live in the US

3) Be Genotype 1

4) You can be on meds; not on meds currently or never on meds. If you are in process of curing the virus, you will still qualify as long as you have not officially cured it.

If you complete the survey, FACP will donate $25 to HEALS.

Please click on this link to access the survey. http://www.sampleczar.com/survey/SC_RD.aspx?supplier_id=5033

You will be asked to register for FACP which takes 1 minute then swung into the main survey. The data in the FACP profile is NOT connected to the main survey. Your participation in this survey and all subsequent surveys is completely anonymous. If you have already registered for FACP, you will have already received an email invitation from them.

If you have any questions about participating, please contact FACP directly at: info@findacurepanel.com

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Hi Everyone. I just completed the survey and it did take about 1/2 hour but H.E.A.L.S would very much appreciate it if those of you that are geno 1's would PLEASE take the time to do the survey and Help H.E.A.L.S Help Others with the $25 donation they will give to H.E.A.L.S.

Thank you for your time and consideration!

Also please feel free to pass forward to anyone you know that would qualify and THANK YOU!

NVHR/NASTAD meeting in DC October 2011~

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

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

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

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

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

GET TESTED for Hepatitis C!

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

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

You should be tested for Hepatitis C if you:

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

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


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

Stop by and visit!

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

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

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

World Hepatitis Day July 28, 2011

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

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


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

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


Then click on the PDF
2011_hepatitis_prc_rel.pdf

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

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

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.

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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

FDA OKs Telaprevir for Hep C

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Helping People with Hepatitis C Get INCIVEK

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

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

For eligible patients, the program includes the following:

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

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

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

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