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

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

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!