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.
Tuesday, January 22, 2013
EIU report highlights low awareness of hepatitis C
EIU report highlights low awareness of hepatitis C
World News | January 18, 2013
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".
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".
Thursday, January 3, 2013
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.go
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.go
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
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.go
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.go
Sincerely,
Michael Honda Hank Johnson
Member of Congress Member of Congress
Bill Cassidy M.D. Barbara Lee
Member of Congress Member of Congress
CC: The Honorable Kathleen Sebelius
CC: Dr. Thomas Frieden
CC: Dr. Kevin Fenton
CC: Dr Ron Valdisseri
CC: Dr. Howard Koh
CC: Dr. John Ward
CC: Dr. Carolyn Clancy
NVHR
P.O. Box 1662
Rohnert Park, CA 94928
United States
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