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Impressions of the Congressional Briefing and HHS Viral Hepatitis Action Plan Press Release

Last Thursday, May 12th, I attended the Congressional Briefing, and the Press Conference releasing the U.S. Department of Health and Human Services (HHS) Action Plan to Prevent, Care and Treat Viral Hepatitis, in Washington D.C..  The HHS Action Plan is in response to the 2010 Institute of Medicine (IOM) report on viral hepatitis.

I have been involved with viral hepatitis, specifically hepatitis B, from a patient perspective for over a decade, but my recent involvement in the political arena is new.   So, I’m still struggling with the numerous acronyms, political calendars and jargon…

It was encouraging to see members of Congress in attendance at the Congressional Briefing – hosted by U.S. Senator John Kerry (D-MA) and Rep. Mike Honda (D-CA), but it is clear that viral hepatitis needs more champions in Congress.  Congressional leaders who spoke included Rep. Honda (D-CA) , Rep. Cassidy (R-LA), Rep. Judy Chu (D-CA), Rep. Dr. Christensen (D-VI), Rep. Barbara Lee (D-CA), and Rep. Dent (R-PA).  Federal public health leaders Dr. Howard Koh, Assistant Secretary of Health, and Dr. Kevin Fenton, Director, National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention of the CDC  spoke regarding the direction and implementation of the plan.

Congressman Honda’s message was loud and clear to the audience:  “You need to be the megaphone.”  As advocates we need to educate and get our representatives on-board. The other, clear message is that the plan is a strategy with the tactics not yet clearly defined.  More importantly, there is no clear funding dedicated to the roll-out.  Rep. Bill Cassidy, a hepatologist, tells us we must be “fiscally responsible”, and yet he also said “Sometimes you have to increase the budget to reduce the deficit”.  Rep. Donna Christensen, also a doctor, states:  “We can save money and reduce the debt” with the viral hepatitis plan.  As a hepatologist and physician, these representatives understand that money spent on patient education, screening, prevention and treatment will be cost effective over time.  I wonder how many Representatives truly understand the ticking time bomb of this silent epidemic.

The representation at the press conference in D.C. was encouraging –everyone in the room with the same goals.   Dr. Susan Wang, a doctor in NYC spoke of her patient base where one in eight patients are infected with HBV.  Michael Ninburg told his personal story with his fight with hepatitis C, and the successful prevention of HBV from his chronically infected wife to their newborn son.  Michael was cured with the new HCV drugs, and his son was protected by a safe vaccine.  All good.

The HHS Action Plan for Viral Hepatitis will roll out through 2013.  Some of the goals are more attainable than others, such as delivering the first birth dose of the HBV vaccine to infants prior to discharge.  Dr. Koh describes this as the “first shot of life.” Administering prophylaxis and vaccination to infants born to HBV infected mothers is also feasible.  Other goals are loftier, less clearly defined, and will require significant funding.

Dr. Fenton, of the CDC, tells us the viral hepatitis plan will be implemented as a collaborative effort, leveraging resources between government agencies such as HHS, HRSA (Health Resources and Services Adminstration , CDC (Centers for Disease Control), and CMS (Centers for Medicare and Medicaid Services). 

Portions of the plan are dependent on the Affordable Care Act (ACA) and Health Care Reform, which are under attack.  It will be important for these programs remain intact for the plan to be successful.

We are all well aware of shrinking budgets and the need to be fiscally responsible, keeping in mind the human component.  This plan cannot be implemented without collaboration and cooperation between government and community organizations and efforts, and most importantly – funding.

That’s where we, as voting Americans, fit into the equation.  We need to get educate our Representatives and Senators by raising their awareness of viral hepatitis.  We need to tell them there is a plan to combat viral hepatitis.  We need to personalize this, tell our stories, and let them know that we do NOT want funding for viral hepatitis cut from the budget.  

Was your Representative present at the briefing?  Mine was not…

Visit your Representative during Constituent Work Week.  Write a letter, send an email, call and speak to a health staffer, or tweet your Representative, today.

Read the HHS Action Plan to Prevent and Treat Viral Hepatitis.

Happy 20th Anniversary to the Hepatitis B Foundation!

Hepatitis B Foundation 20th Anniversary Gala

 

Join the Hepatitis B Foundation with this short, fun, YouTube video with great snapshots and music as the Hepatitis B Foundation  celebrates its 20th Anniversary.  The Hepatitis B Foundation is the only national non-profit organization solely dedicated to the global problem of Hepatitis B. 

If you want to know more about HBF, check out our mission and story.  We’ve had some great accomplishments over the last year, so take a moment and review our  2010 annual report, and see what contributions HBF has made to hepatitis B research, outreach, and advocacy.

Call to Action! Urge Your Members of Congress to Attend Viral Hepatitis Congressional Briefing!

On Thursday, May 12th, Congressman Mike Honda and Senator John Kerry will hold a Congressional briefing entitled “Combating the Hidden Epidemic: U.S. Department of Health and Human Services Action Plan for the Prevention and Treatment of Viral Hepatitis.” This briefing will inform Members of Congress and their staff about the long-awaited report from HHS that will detail the federal government’s strategy for combating hepatitis B and C in the United States.

The release of this report and the briefing offer a tremendous opportunity to change the course of the viral hepatitis epidemic in the U.S. and demonstrate Congressional leadership in moving forward a comprehensive prevention and treatment strategy.

We need as many Members of Congress and their staff to attend this briefing to show their commitment to implement and fund the HHS plan. You can help make this happen by making three important phone calls right now!

How you can make a difference:

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your U.S. Representative. When you are connected, ask for the staff person who handles health care issues. Whether you speak directly to the staff person or leave a message, tell him/her:

“My name is _____________ and I live in (city/state). I am calling to urge Representative _____________ to attend a Congressional briefing on fighting the viral hepatitis epidemic in the United States. This important briefing will outline the new HHS “Action Plan for the Prevention and Treatment of Viral Hepatitis.” The briefing will be held on Thursday, May 12th, from 9:30 – 11:00 am in 210 Cannon House Office Building. Please contact Meina Banh in Congressman Mike Honda’s office for more information and to register. In the next 10 years, about 150,000 people in the United States are projected to die from liver cancer and liver disease associated with chronic hepatitis B and C. I strongly urge your office to participate in this briefing and show your commitment to fighting these preventable diseases.”

Next, call both of your two U.S. Senators (using the Capitol Switchboard number) and deliver the same message to their health care staff.

You can also ask the staff person for his/her email address and forward the attached “Dear Colleague” letter with more information about the briefing.

Thank you for taking the time to make a difference!

This Action Alert was created by the Hepatitis Appropriations Partnership, the National Task Force on Hepatitis B: Focus on AAPIs, and the National Viral Hepatitis Roundtable.

Join The Hepatitis B Foundation for Our 20th Anniversary Crystal Ball!

The Hepatitis B Foundation is celebrating 20 years as the global authority dedicated to eradicating Hepatitis B. 

Please join us for an evening of fine dining and entertainment!

Date: Friday May 13th, 2011
Time:  Cocktails 7:00 pm
Dinner:  8:00 pm
Place:  PineCrest Country Club in Landsdale, PA
Dress:  Business or Cocktail Attire
Tickets:  $175 per person or $300 per couple

This is the Hepatitis B Foundation’s signature fund raising event, so we hope you will join us in an elegant evening of celebration, fine dining, and dancing to the sounds of Courtney Colletti Music!

Both a silent and live auction will add to the festivities.

If you are unable to attend the evening, but would like an opportunity to participate in a raffle to benefit the Hepatitis B Foundation, and WIN a six days/nights vacation to exotic Costa Rica, you may purchase a ticket.  The winning ticket will be drawn May 13th, but the winner need NOT be present to claim the prize!  Click here for more information!

For additional details and tickets, please call Ms. Peggy Farley at
215-589-6328 or email Peggy.Farley@hepb.org

We hope to see you there!

Why Vaccinate Infants Against Hepatitis B?

Sadly, out of all age groups, it is infants and very young children that are at the greatest risk for acquiring a chronic, life-long infection with hepatitis B.  In fact 90% of babies exposed to HBV will become chronically infected, and will live with the virus for the rest of their lives.  This includes mother-to-child transmission, and horizontal transmission from close contacts.  This is why the first dose of the hepatitis B vaccine is recommended before leaving the hospital.  The vaccine is safe and effective.  Choosing to vaccinate is an option those of us with HBV infected children would have LOVED to have.

Hepatitis B is a silent disease.  Forty percent of people living with HBV have no idea how they became infected.  Others have not yet been diagnosed.   Many likely acquired it at birth, or early exposure, and have had the virus smoldering for decades.  They may find out about it in routine blood tests, or from the Red Cross following a blood donation.  Hepatitis B is non-discriminating, although it is more prevalent in certain high risk groups.   Sometimes being part of a high risk group is as simple as having a parent born in a country where HBV is endemic.  Hepatitis B is 100 times more infectious than HIV, and yet many people say they would get vaccinated against HIV if a vaccine existed.  Why not hepatitis B?

So why have your infant vaccinated at birth?  It just makes sense.  How can you be assured all house-hold contacts are not infected?  War heroes get infected, as do health care workers, and other loving family members – mommies, daddies, grandparents, aunts, uncles, and cousins.  Parents go to work, and little ones go to day care.  They play at the neighbor’s house or with friends at pre-school.  Blood spills occur and sometimes they’re not properly managed, or even noticed.   Boo-boo’s come uncovered and little friends touch.  Sometimes “love-bites” are exchanged much to the dismay of parents.  Even the most vigilant parent is going to miss something.   HBV is not transmitted casually, but the possibility of exposure cannot be denied – especially at such a young age.

Hepatitis B is a poster-child for infant vaccination.  It is a tenacious virus, and there is no true cure.  If you are a pregnant woman, be sure you are tested for hepatitis B during your pregnancy.  If you are HBV positive, break the cycle One in five at-risk babies in the U.S. may NOT be receiving the necessary treatment, so SPEAK UP and ensure your baby receives prophylaxis treatment at birth.  Complete the vaccine series and have your baby tested for HBV at his one-year checkup to ensure he is protected.

If you are not HBV positive give yourself piece-of-mind.  When your baby is born, be sure to have her vaccinated before you leave the hospital, and give her a lifetime of protection against hepatitis B.

Hepatitis B and Chocolate

Planning on digging into your favorite dark-chocolate stash, or biting the ears off of a dark-chocolate bunny this weekend?  Dark chocolate is popping up everywhere.  Even some old favorites have a new, dark chocolate wrapper, replacing the now-passé milk chocolate.  Recently, studies have extolled the benefits of dark chocolate, and how it potentially prevents heart disease, reduces the risk of brain damage after a stroke, lowers the risk of heart failure, lowers blood pressure, reduces heart disease, has anti-cancer benefits, slows dementia, raises libido, and last but not least, is mood enhancing.  What about those suffering hepatitis B associated liver disease?

Last year there was a study out of Spain that investigated the benefits of dark chocolate to patients with liver disease – specifically patients with cirrhosis.  Cirrhosis causes portal pressure to rise, potentially resulting in damage to blood vessels in the liver.  Eating causes an additional rise in pressure, which becomes more dangerous as liver disease progresses.  Half of the study participants were given white chocolate, and the other dark chocolate.  The dark chocolate group saw a larger decrease in the blood pressure of the liver, and increased blood flow.  Keep in mind that this was a small study with only 21 participants.

The good news is that dark chocolate, specifically the cocoa component, is rich in antioxidants called flavonoids, and other beneficial components such as  phenylethylamine, theobromine,  anandamide, magnesium, copper, and vitamins E and B.  That’s certainly a mouth-full, but it is these key components that provide all the benefits of chocolate.

Here’s the bad news.  Many of us enjoy milk chocolate, or even the dreaded white chocolate, which has little or no benefit due to the processing of the cocoa, and the resulting loss of flavonoids.   In fact, the lighter the chocolate, the fewer the benefits.  In a perfect world we would be eating unsweetened, cocoa powder right out of the tin, or a chocolate bar with upwards of 85% cocoa.  That can be a pretty biting chocolate.  The chocolate many of us enjoy has a larger quantity of white sugar , which is not beneficial to the liver, or any other organ, nor is the additional butterfat, which is added to lighter chocolate.  However, if you can adjust your tastes a little and learn to adapt to less sugar and butterfat, dark chocolate is great addition to your diet.

Aren’t most of us looking for an excuse to add chocolate to our diets?  Ultimately, all things in moderation is the key.  A small amount (roughly 6.7 grams) of dark chocolate added to your daily diet is certainly not going to hurt you, and may in fact reduce abdominal pressure and portal pressure in the liver.  Perhaps the greatest redeeming quality of chocolate is it’s mood enhancing qualities.  If it feels good, and eaten in moderation, then why not reap the benefits of dark chocolate and enjoy your improved mood.

Do You Have Hepatitis B?

Have you been told you may be infected with  hepatitis B?  Did you get a letter following a blood donation, or receive lab results indicating infection?  It’s important you relax, educate yourself, and don’t let the news scare you.  The next step is to determine if you are infected, and if so, do you have an acute or chronic infection.

You’ll want to talk with your doctor, and have a hepatitis B blood panel run.  It is essential that you do not ignore the possibility of infection.  That being said, it’s equally important that you not panic.

When you get your lab results, ask your doctor to explain them to you.  It’s possible that you are not infected, but if you are, then you will need follow-up testing.  Be sure to ask for copies of your labs for your own records.  The test results are initially confusing, so you will want to refer back to the hard-copy results.

It is important to determine if you have an acute or chronic infection, but this may take some time.  If you were infected with HBV as an adult, there is a good chance you are acutely infected.  Fortunately, 90% of infected adults resolve the virus on their own. Recently infected adults may have flu-like symptoms, fatigue, yellowing of the eyes, or they may have no symptoms at all.  The answer is in the lab work.  Your doctor may run an HBc-IgM test, which will tell you if the infection is newly acquired. If it is a new infection, you will be monitored for the next one to six months to see if the HBV infection clears, and to ensure you are safe.  During this time, you are infectious to others, so it is important to practice standard precautions and ensure household members are vaccinated.  It is important to eat properly, rest, and avoid alcohol and tobacco. Talk to your doctor about the use of prescription and OTC drugs.  Hopefully your body will be able to mount an appropriate immune response, and you will be able to rid yourself of the virus.  If you remain surface antigen positive (HBsAg+) for more than six months you will be considered chronically infected.

Ten percent of those infected with HBV as an adult, will not clear the virus, and will become chronically infected.  Another group of adults that may just be learning of their Hepatitis B status, are those that acquired HBV at birth.  HBV infected mothers may unknowingly transmit HBV to babies.  Transmission can be prevented with vaccination at birth, but in many countries where HBV is endemic, a cycle of HBV transmission may exist where vaccination has not been available, and the virus is passed unknowingly from one generation to the next. Unfortunately, 90% of those infected at birth are chronically infected, even though it may not be determined until adulthood.  HBV is usually an uncomplaining disease, so it may be picked up accidently with blood-work , or when liver disease progresses due to decades of chronic infection.

Keep in mind that being vaccinated against hepatitis B will not protect you against the virus if you were infected with HBV prior to vaccination.  This can be confusing since most people are not screened prior to vaccination, and is  especially pertinent in high risk groups where the likelihood of mother to child transmission is greater.

The Hepatitis B Foundation has a step-by-step, comprehensive, yet-easy-to-understand tutorial that leads you through the process of determining your hepatitis B status, specific test results, and practical advice for coping with your HBV diagnosis.

Got Hepatitis B? B Sure to Take Care of U!

As a mother of a child with hepatitis B, I was always concerned my child would transmit the virus to others.  One day a toddler came up and bit her in the finger and drew blood.  She was strapped into her stroller, and yet I felt guilty and fearful she might transmit the virus to “the biter”.  I rushed my child to the pediatrician, and immediately inquired about the safety of the other toddler.  He reminded me that that “blood is a two-way street for the transmission of infectious diseases”.   I should worry about MY child.   The other child was likely vaccinated since HBV vaccination is required in my state. I heeded his advice, and from that day forth I started thinking about the safety of MY child and others infected with HBV.

Fortunately, hepatitis B is a vaccine preventable disease, so that does ease concerns regarding the transmission of HBV to others.  A simple three shot HBV vaccine series does the trick.  There is no reason someone should NOT be protected against a vaccine preventable virus that is 100 times more infectious than HIV!   Stop feeling guilty, and start thinking about protecting YOU!

If you have HBV, Hepatitis A (HAV) can be very dangerous.   HAV is vaccine preventable.  A simple two shot series will keep all those with or without HBV safe from highly-contagious HAV.

Unfortunately, there is no vaccine for HCV or HIV.  If you are HBV+, a  co-infection is complicated and dangerous, and can result in significant liver damage.  The best way to combat infection from HCV, HIV and other infectious diseases is to use standard precautions.

Make standard precautions part of your everyday life.  Simple hand washing and proper avoidance of contact with someone else’s blood and body fluids is an easy way to avoid transmission of potentially life threatening illnesses, or any illness.  Cover open cuts with a Band-Aid.  Provide a barrier between someone else’s blood or body fluids, and any open wounds, sores, mucus membranes and orifices.  You don’t want to get infected with another blood borne pathogen!  Does this mean you need to look like someone out of a bio-hazard lab with goggles and gloves?  No!  Use common sense, and you can be safe without going overboard.   A simple barrier between you and someone else’s body fluids is the best way to avoid exposure.  Keep something like a clean diaper, towel or wrapped sanitary pad, in a plastic baggie, in your car, and on each level of your home.

Personal toiletries should be just that…personal.  Keep your toothbrush away from your sibling, friend or SO. Neatly dispose of used feminine hygiene products because it’s the right thing to do.  Don’t leave your razor or nail clippers lying around.  Sharp, personal objects really are a perfect transmission route for infectious disease.

Got HBV?  Remember, keep YOURSELF safe!  And the kid in the stroller… well she’s a teen, today.  Now there’s a whole new set of worries.

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.

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