Monday, November 26, 2012

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

 

Tuesday, September 18, 2012

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

Tuesday, July 17, 2012

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!

Thursday, July 5, 2012

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)

Saturday, March 24, 2012

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 รข€“ 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!

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

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

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!