Hep B Blog

Tag Archives: advocacy

First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030

The joint North and South Americas group build relationships across borders to eradicate hepatitis B.
The North and South Americas group builds relationships to eradicate viral hepatitis.

The mood was euphoric. It was a love fest, actually. Last week, more than 600 policy makers, public health experts, and representatives from non-governmental organizations and patient advocacy groups from 80 countries were invited to participate in the first World Hepatitis Summit in Scotland hosted by the World Hepatitis Alliance in partnership with the World Health Organization (WHO). The Hepatitis B Foundation was pleased to be invited and to speak during the pre-summit meeting as well.

The message was serious. Hepatitis B and C kill more people each year than HIV/AIDS and tuberculosis, and combined are the seventh-leading cause of death worldwide, yet viral hepatitis as a global health concern remains mostly invisible and under-funded. Continue reading "First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030"

The Hepatitis B Patient Community Loses Its “Mom”

Hep B List "parents" Sheree Martin and Steve Bingham at a 2005 patient conference.
Hep B List “parents” Sheree Martin and Steve Bingham at a 2005 patient conference.

The hepatitis B community recently lost its much-loved advocate, resource and “mom,” Sheree Martin. She was co-owner of the Hepatits B Information and Support List from 1998 to 2011 and comforter and consultant to thousands of people around the world who live with hepatitis B.

The reach of her kindness and wisdom cannot be under-estimated. In the early days of hepatitis B, when medical treatment was misguided and stigma ran rife, Sheree nurtured a safe, online community that provided reassurance and accurate medical information. For many, it was the first time they were able to share the confusion, loneliness and frustration of living with chronic hepatitis B with people just like them. Continue reading "The Hepatitis B Patient Community Loses Its “Mom”"

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing Hepatitis B"

Know Your Rights: What College Students with Hep B Need to Know About Health Forms and Disclosure

Image courtesy of stockimages at FreeDigitalPhotos.net.
Image courtesy of stockimages at FreeDigitalPhotos.net.

This summer, students living with hepatitis B face a task that can be as stressful as SATs, entrance exams or writing college essays – completing their colleges’ health forms.

Some colleges and graduate schools require no medical information while others expect you to document in detail your allergies, immunizations, medical history and even undergo TB testing.

The good news is colleges want to make sure all students are vaccinated against hepatitis B, the bad news is the requirement can force students to disclose their hepatitis B infection. Here are some important things parents and students should know when filling out college health forms.

No school can deny you admission or treat you differently because you have hepatitis B. The Americans with Disabilities Act (ADA) prohibits discrimination based on disabilities, and that includes hepatitis B.

Continue reading "Know Your Rights: What College Students with Hep B Need to Know About Health Forms and Disclosure"

It’s Time to Take On the Deadliest Cancers

congressional briefing
Congressional briefing organized by the Deadliest Cancers Coalition with the Congressional Caucus on Deadliest Cancers, Thursday, June 19, 2014, Washington, DC

Recent projections for the top cancer killers in 2030 confirmed some encouraging trends but also sounded a warning bell. Continue reading "It’s Time to Take On the Deadliest Cancers"

Deadliest Cuts of All

cancer-ribbons_final2

Just 8 cancers (ovary, myeloma, brain, stomach, esophagus, lung, liver, and pancreas) will cause nearly half of all cancer deaths in 2014.

Joining a deadly cancers “club” is not on anyone’s wish list. Yet Liver Cancer Connect, a dedicated program of the Hepatitis B Foundation, welcomed the opportunity to become a member of the Deadliest Cancers Coalition.

The Coalition was established in 2008 by the Pancreatic Cancer Action Network and other patient advocacy organizations and professional societies.

The group addresses policy issues related to the nation’s deadliest (recalcitrant) cancers. These are defined as the cancers that have 5-year relative survival rates below 50%.

While various types of cancers fit this definition, it is worth noting that nearly half of the 585,720 cancer deaths expected in 2014 will be caused by eight deadly cancers: ovary, myeloma, brain, stomach, esophagus, lung, liver, and pancreas.

Over the past 40 years, the overall 5-year relative survival rate for all cancers has increased from about 50% to 68%. This encouraging progress was mainly thanks to significant federal funding, through the National Institutes of Health (NIH) – the world’s premier supporter of biomedical research – and the National Cancer Institute (NCI). Those federal funds have been matched by investments from pharmaceutical companies, nongovernmental organizations, and states.

But some cancers have not even reached the 50% survival benchmark, let alone surpassed it. To improve survival and outcomes for people with these deadliest cancers, Congress passed the landmark 2012 Recalcitrant Cancer Research Act.  The law calls on NCI, which is a part of NIH, to develop scientific frameworks to help improve outcomes for people who have cancers with very low survival rates.

Unfortunately, continued budget cuts have led to a 23 percent reduction in NIH’s capacity to fund much-needed medical research, including research that can improve survival rates. And the squabbling over future budgets continues.

To stop further funding cuts, the members of the Deadliest Cancers Coalition are rallying their grassroots organizations to contact congressional representatives and urge them to safeguard federal funding for NIH, including NCI.

That some cancers have survival rates below 50% is deeply troubling. But the funding cuts that threaten cancer research are even more disturbing. In fact, they’re deadly.

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.

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