Showing posts with label hepb. Show all posts
Showing posts with label hepb. Show all posts

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".


Thursday, December 13, 2012

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

Wednesday, November 28, 2012

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/

Wednesday, November 2, 2011

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

Sunday, October 30, 2011

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!