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Hepatitis B Advocacy

Hepatitis Health Action Alert: The Hepatitis Community Responds to Health Care Reform

ACTION ALERT!

Prevention funding in Health Care Reform is under attack.

Tell your representative to vote NO on H.R. 1217

On April 5th, the assault on the Affordable Care Act continued when the House Energy and Commerce Committee voted along partisan lines in favor of H.R. 1217, which would repeal the Prevention and Public Health Fund. This fund, part of the health care reform law, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.

This fund offers a great opportunity to get some of the money targeted to viral hepatitis prevention, screening, and testing programs. We cannot advocate for that money if the entire fund is repealed. We also must protect this fund as part of defeating the ongoing strategy by those who oppose the Affordable Care Act to attack the law by repealing and de-funding its important pieces.

The full House of Representatives is expected to vote on H.R. 1217 as early as this week. Please take a few minutes to call your Representative and tell him/her to vote NO.

Here’s what YOU can DO:

Please call your U.S. House Representative immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication.

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent, and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voice mail, tell him/her:

“My name is _______________ and I live in (city/state). I am calling to urge Representative ____________ to vote no on H.R. 1217. This bill would repeal the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved.”

Thank you for taking the time to make a difference! Please spread the word.

Get involved with Hepatitis Health Action!

·         Sign up for the Hepatitis Health Action email list by visiting http://groups.google.com/group/HepHealth or, email Christina at cchun@projectinform.org and we will make sure you are added.

·         Join Hepatitis Health Action’s Facebook group:  http://tinyurl.com/hephealthfacebook where you can participate in discussions with other advocates and share your ideas and strategies.

·         Follow Hepatitis Health Action’s blog for news and commentary: http://hephealthaction.wordpress.com

Hepatitis Health Action is a new campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.

Hepatitis B Advocacy

The Hepatitis B Community Loses Cherished Friend and Advocate

It is with great sadness and heavy hearts that we notify the hepatitis B community of the passing of Dr. Baruch S. Blumberg.  Dr. Blumberg died suddenly on Tuesday, April 5, 2011.  His discovery of the hepatitis B virus and invention of the first vaccine against hepatitis B, which resulted in the Nobel Prize for medicine in 1976, have been among the most important in the history of science and medicine.  In addition to serving as Senior Advisor to the President of Fox Chase Cancer Center, Dr. Blumberg co-founded the Hepatitis B Foundation and served the Foundation as a Trustee Distinguished Scholar.  His ongoing acts of support to the Foundation will always be remembered and admired.

“It has been one of the greatest professional privileges of my life to have known and to have worked with Dr. Blumberg.  He was a wonderful mentor to me, and to all of us at the Hepatitis B Foundation, who had the honor of knowing him.  His curiosity and enormous intellect was always so motivational.  He made it clear to all of us at the Foundation, how one life can do so much to benefit the world.  Nothing will be the same without him, but so much has changed because of him.  He will always be an example and inspiration for us all.” –  Dr. Timothy Block, President of the Hepatitis B Foundation

Please join us in remembering our dear friend, colleague, advocate and champion of the hepatitis B cause, Dr. Blumberg.  Our thoughts and prayers are with the Blumberg family.

Baruch S. Blumberg

1925-2011

 

 

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Who’s On Your HBV Team?

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No matter where you are with your hepatitis B – chronically infected since birth, or recently learned you are HBV positive, you want to be sure you are surrounded by all of the right people to give you the medical guidance and emotional support you need.

Start with your primary care physician (PCP).  You want a doctor that listens to you and is willing to work with your liver specialist.  Your PCP’s office may be coordinating your annual or bi-annual lab work for HBV monitoring and is your first line of care .

HBV can be complicated when it comes to making decisions about whether or not you need monitoring, treatment, or monitoring for liver cancer (HCC).  There are many phases of HBV, and you want to be sure you are followed through ALL phases.  You need a liver specialist that has experience working with patients infected with HBV.  This doctor is nearly always a Gastroenterologist (GI doc) or a Hepatologist.  If the patient is a child, you need a pediatric GI doctor or hepatologist.  Although well qualified, an infectious disease doctor is not really the best fit because of the involvement of the liver.  Once again, experience with HBV infected patients is crucial.  These specialists are often found at large, or University Hospital centers.

Check out this directory of liver specialists in your area.   Keep in mind that living a couple of hours from your liver specialist should be fine.  Visits are typically annual or bi-annual.  Visits may increase depending on treatment you may require.  Lab work can usually be coordinated with your local lab via your PCP.

Get to know your local pharmacist.  They are a wonderful source of information on everything from prescribed HBV medications to choosing the best OTC cold medicines, or pain relievers.  I am on a first name basis with my pharmacist, and try to visit when the volume of customers is low, so no one feels rushed.

Living with a chronic illness can take its toll on your mental health.  Each patient is unique, but generally all patients cycle through initial fear or denial, isolation, worry, and acceptance.  If you feel you are depressed and need help coping with your HBV, seek advice from your PCP, liver specialist, or a mental health expert.

Consider joining a support group.  Sometimes it’s lonely dealing with a complicated, chronic illness like HBV.   Support groups are a great forum for addressing the many concerns when dealing with various aspects of your HBV, from the best treatment protocols to sex and dating.  I belong to two HBV support groups and I find the interactions extremely informative, and the list members caring and very supportive of members in all stages of their HBV.

Take a look at The Hepatitis B Foundation’s website.  There’s a multitude of information from simple HBV basics to in-depth information from world-renowned liver specialists and researchers, along with personal stories.  Ask away if you have any questions.  HBF is here to help, and we hope to be part of your team.

Baruch S. Blumberg Institute