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Hepatitis B Advocacy

Viral Hepatitis Meetings in D.C.

Last week was an eventful week for this HBV blogger.  I was fortunate to be able to attend the National Viral Hepatitis Technical Assistance and the National Viral Hepatitis Round Table (NVHR) meetings in Washington D.C. last Tuesday and Wednesday. These meetings were followed by Capitol Hill visits on Thursday by viral hepatitis advocates to their legislative offices.

In attendance at the meeting were state viral hepatitis coordinators from around the country, other state health department personnel, government representatives from various agencies and organizations, and numerous viral hepatitis advocates from various non-profit organizations. It was a great opportunity to meet colleagues from all over the country dedicated to combating viral hepatitis in the United States.

Please keep in mind that my background is patient oriented, and that I do not have a master’s degree in public health, nor do I have experience working in the public health system.  Keeping up with the political front is challenging as is keeping up with the public health system. I’m still trying to figure it all out. Both have their own language and acronyms. After a couple of days of meetings, I have a great deal of respect for those working in public health at both the federal and state level.  I also have a great deal of respect for those working to push policy on behalf of viral hepatitis. There’s always more to learn, but you can still make an impact by jumping in and getting involved at a number of different levels.

A couple of messages were loud and clear at the meeting and you didn’t need to be an expert to understand them. Perhaps the biggest message is that funding for viral hepatitis public health programs is very limited and the burden is well beyond the level of funding.  This comes as no surprise since these are difficult times for both state and federal government programs.  This lack of funding will require that all health departments, government organizations and agencies, advocacy groups and non-profits pull together using what I call the 3-C’s:  communication, coordination, and collaboration.  Don’t forget to be creative, resourceful and wrap it all up with a coordinated IT system.

What was nice about this forum is that people were able to see what was going on in other states.  Bringing people together infuses new information into the group, while creating relationships where people want to help one another.  This is imperative if we are to address viral hepatitis needs with a minimal budget. One viral hepatitis coordinator reminded people during a break-out session that there are small pots-of-money out there, but you’re going to have to be creative when looking for grant opportunities.

Chris Taylor from the National Alliance of State & Territorial Aids Directors (NASTAD) asked me, and others to do a video-taped interview where I was asked about my personal hepatitis B story. This was a great way for me to make a contribution, and I was happy to help. Telling your story can be a compelling way to raise awareness and get involved.

Natalie Cole was in D.C. doing a press conference promoting her “Tune In to Hep C” campaign. NASTAD arranged for her to make an appearance at the NVHR meeting.  It’s always great to have a celebrity figure to promote a cause and raise awareness with the general public. They are able to reach so many people at one time!

Thursday’s Capitol Hill visits were a great opportunity for viral hepatitis advocates to get in front of their own Representatives in Congress, or their state Senators. Each person on the visit brought her talents to the table.  Some were up on politics, policy and the process, while others dealt with the hepatitis at the public health level.  Finally, there are people like me that are most familiar with hepatitis B on a personal level.

The meetings made it clear that we all need to collaborate and be creative if we are going to combat viral hepatitis.  Americans living with viral hepatitis may be wondering what Washington or their home-state is doing about viral hepatitis.  Things are being accomplished.  Based on the Institute of Medicine (IOM) report, we have the HHS Action Plan for the Prevention, Care & Treatment of Viral Hepatitis that was introduced last May.  Planning and process is currently being written around the plan.  People are in place and they are working hard, but the system and its processes are huge, complicated, and slow moving.  It is certainly not a perfect system, but we can all contribute at some level to make this an issue important to those that do drive policy, and ultimately fund programs.

Where do you fit in?  If you are in policy or public health you know you have a big job ahead of you, but it is essential that you keep looking for ways to move the system more effectively and efficiently. If you’re living with HBV, you might think you can’t make a contribution, but that is not true. This is where “arm-chair advocacy” comes in.  Not everyone is going to head to D.C. to meet with their Senator or Congress person. However, you can make your voice heard.  Visit your representative when she is home for constituent work week.  A simpler, but equally effective alternative is to write, call, email or tweet your Representative or Senator.  Let your Representative know that you are living with hepatitis B, and that you want him to support viral hepatitis legislation. Use your voice and make your vote work for those living with HBV in your state!

Hepatitis B Advocacy

Hepatitis B Carriers Need Not Apply: Discrimination in China

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Please take look at this video on HBV discrimination in China.  This isn’t a new story for China, rather an ongoing problem. Despite the high numbers of HBV infected persons living in China, discrimination is rampant.  One in ten Chinese carry the hepatitis B virus. The range of HBV discrimination in China is vast.  Life changing opportunities are lost due to rejection: rejection from school, lost employment opportunities, and even lost love, all due to HBV carrier status.  Even simple, every-day routines like meals with friends and family are impacted. Many of those infected are expected to eat separately, or carry their own bowl and chopsticks.  This is due to widespread ignorance on how HBV is transmitted.

An HBF friend told me Lei Chuang, the student in the video who was rejected from a top post-graduate University program due to his HBV status, is a very popular.  Evidently he is a very visible and admired anti-HBV discrimination activist in China.  Lei Chuang suspended his post-graduate studies in order to campaign against HBV discrimination. One of his on-going projects is an invitation to dine with the Chinese Premier. Every day he sends one letter to the Premier – 151 letters and counting. That takes a lot of courage.

Lu Jun is the director of the Beijing Yirenping Center.  He has been actively fighting discrimination in China, along with providing education, outreach and patient counseling.  His organization works tirelessly to defend the rights of those living with HBV by providing legal support for anti-discrimination lawsuits. He was also pivotal in creating the Chinese HBV internet forum, www.hbvhbv.com, creating a critical link between nearly half a million Chinese subscribers. (Keep in my that social media outlets such as facebook, twitter and Youtube are blocked in China.) Lu Jun is also a friend of the Hepatitis B Foundation, and joined us for our patient conference in June of 2008.

Having witnessed HBV discrimination in China, first-hand, I can tell you that I admire these men, and all others willing to take a stand and actively fight discrimination in their country. Not everyone is able to find their voice in this fight, so the sacrifice of these individuals is to be commended. However, whether outwardly speaking out or quietly behind the scenes, it is imparative that we all do our part to help raise HBV awareness.

Hepatitis B Advocacy

Distinguished Doctor and Contributor to the Viral Hepatitis Community Dies

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Dr. Emmet B. Keeffe, Professor of Medicine Emeritus at Stanford University in Hepatology, passed away unexpectedly on August 8, 2011 after a distinguished career in hepatology. He was sixty-nine years old.

Please join us in extending our condolences to the family, and many friends, colleagues and patients of Dr. Emmet Keeffe.  We are all saddened by his death. Dr. Keeffe was a major contributor in the viral hepatitis community and made significant contributions throughout his 42 years practicing medicine.  Dr. Keeffe had an impressive list of professional achievements, administrative appointments, honors and awards. His clinical research interests focused on the treatment of chronic hepatitis B and C, where he was a principle investigator for many clinical trials treating numerous patients.  Dr. Keeffe has been published extensively throughout his career.

Dr. Keeffe was a true thought leader in the field of hepatitis B who grasped all aspects of this liver disease. He created bridges of understanding between the science, medicine and patient experiences for the entire hepatitis B community. We will miss his active involvement and support of the Hepatitis B Foundation, but most importantly, we will miss his vital contributions to the science and medicine of chronic viral hepatitis.

Emmet B. Keeffe, MD

April 12, 1942 – August 8, 2011

 

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

Gearing up for World Hepatitis Day!

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World Hepatitis Day is July 28th!  What are you doing to raise awareness and educate others about hepatitis B?  I asked this on HBF’s facebook page, and a friend from Ghana wondered what he could do to help raise awareness.  Another friend replied about his concern with HBV in Malawi.

When you consider the scope of hepatitis B, globally, it is indeed sobering.  Statistically, two billion people have been infected with hepatitis B worldwide, and 400 million are chronically infected.  Don’t let these numbers discourage you from your efforts.

When I returned from China in 2003, my heart was heavy with the burden the Chinese people experience on a day-to-day basis, living with HBV.  At the time I was providing infectious disease training for specific groups of Chinese people, but of course in the scheme of things, the outreach effort seemed minimal when compared to the burden.  I had to focus my efforts one-person-at-a-time.  I couldn’t let the sheer numbers discourage me from my mission to educate and raise HBV awareness at any level.

If you have the money or the connections to do something in a big way, that is wonderful.  Then many will benefit from your contribution.  However, I think it is important to note that hepatitis B education and awareness is fundamentally carried out at a grassroots level, where small numbers of individuals band together to make a difference.   Organizations like the Hepatitis B Foundation are crucial due to their ability to reach out and impact larger numbers of people through research, outreach, education and increased HBV awareness.  Utilize their website, social media channels and outreach to gain and share educational information, and help raise awareness.

So what can you do as an individual?  First thing you need to do is get educated on viral hepatitis.  There is much confusion among people about how HBV is transmitted.  If you mention hepatitis B, someone will invariably say, “oh yes.  My uncle got that from eating contaminated food!”  Well, he did get NOT hepatitis B from food!  Know the ABC’s of viral hepatitis, and eliminate these myths.  Hepatitis B is not spread casually, or by sharing a meal, hugging or kissing someone with hep B.  However, HBV is non-discriminating, and we are all vulnerable if we are not vaccinated.

Learn the facts about HBV.  Know some of the statistics, and how it is transmitted.  Know the difference between an acute infection vs. a chronic infection.  Know that 90% of adults will clear an acute infection, while 90% of infants infected will surely live with hepB for life.  Be sure safe injection and medical practices are followed in health care settings.

To raise awareness and eliminate confusion, you don’t have to know the details of surface antigens, antibodies or how to interpret blood test results.  You can look that up on HBF’s website!   This detailed info comes with time.  Start with the hep B basics.  If you are educated, you can educate others.

Learn about the HBV vaccination.  Know that if you are in a high risk group, you should be screened before you are vaccinated.  The vaccine doesn’t work if you already have hepB!  If you are not infected, then get vaccinated.  Let everyone know why vaccination is necessary.  Encourage pregnant women to be screened for HBV.  Ninety percent of  mother-to-child transmission of HBV can be eliminated by ensuring an infant receives a birth dose of the hepatitis B vaccine, followed by the other two shots in the series.  If HBIG is available to newborns of infected mothers, that is even better.

Many believe that hepatitis B will not affect them because they may not have symptoms. They do not realize HBV is a silent epidemic.  They may not realize the importance of their non-complaining liver, and how HBV can destroy it over time.

If you or loved ones have HBV, be sure you are vaccinated for Hepatitis A.  Take care of your liver and abstain from alcohol and tobacco use.  Eat a healthy diet, and practice safe sex.  Practice standard precautions.  Use common sense!

Now for the outreach part… Depending on your hep B status, you might be reluctant to share your new found information with everyone.  Start with your family, friends and household contacts.  They may not understand the global significance of HBV.  It’s okay to start small.

If you’re ready to increase your effort, then reach out to your church, and your community.  Join with others and participate in local city or village health center and community awareness events.  Join an HBV support group, and if you’re interested, create a language specific group for your country.  Volunteer, speak out, and help educate the masses of people who are unaware that HBV is truly a silent epidemic.

Together we can make a difference!

Hepatitis B Advocacy, Hepatitis B Prevention

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.

Hepatitis B Advocacy, Hepatitis B Treatment

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.

Hepatitis B Advocacy

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

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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.

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

 

 

Baruch S. Blumberg Institute