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Join the Conversation at the Hep B United Summit; Watch Summit Sessions On Facebook Live!

Summit Image FB Insta (1)The annual Hep B United Summit, organized by the Hepatitis B Foundation, convenes in Washington D.C. from Thursday, July 27 through Friday, July 28. National and local coalition partners, experts, stakeholders, and federal partners will meet to discuss how to increase hepatitis B testing and vaccination and improve access to care and treatment for individuals living with hepatitis B.

You can watch many of these important sessions on Facebook Live. You can also follow the conversation at the Summit on Twitter with #Hepbunite!

Facebook Live is live video streaming available to all Pages and profiles on Facebook. Check out the agenda below and go to the HepBUnited Facebook Page to view the live broadcast. The session will be made available following the broadcast for those who are not able to join us live.

Here are the details on the sessions that will be broadcast on Facebook Live:

Day 1 – Thursday July 27:

8:30 – 10:00 AM:  Welcome and Introductions
Tim Block, PhD, President & Co-founder, Hepatitis B Foundation and Baruch S. Blumberg Institute, Chari Cohen DrPH, MPH, Co-Chair, Hep B United and Director of Public Health, Hepatitis B Foundation, Jeff Caballero, MPH, Co-Chair, Hep B United and Executive Director, AAPCHO

10:00 – 10:30 AM:  Time to Eliminate Hepatitis B
Dr. John Ward, Director, CDC Division of Viral Hepatitis 

10:30 -11:15 AM:  #justB Storytelling Campaign Panel: Real People Sharing their Stories of Hepatitis B
Rhea Racho, MPP, Public Health Program and Policy Coordinator, Hepatitis B Foundation and storytellers

11:15 – 12:00 PM: Know Hepatitis B Campaign Updates
Cynthia Jorgenson, DrPH, Team Lead and Sherry Chen, MPH, Health Scientist, Division of Viral Hepatitis, Centers for Disease Control and Prevention

12:00 – 12:30 PM:  Increasing Community Awareness and Education
Moderator: Catherine Freeland, MPH, Hepatitis B Foundation and Sherry Chen, CDC

3:00 PM – 4:15 PM:  Breakout Session: Increasing Awareness through Media Engagement
Facilitators: Jessie MacDonald, Vice President, Weber Shandwick and Lisa Thong, Account Supervisor, IW Group

4:15 PM – 5:00 PM:  State of Hep B United
National Advisory Committee
–  Strengthening Coalition Partnerships: Sharing Resources and
–  Overcoming Challenges
Kate Moraras, MPH, Director, Hep B United and Sr. Program Director, Hepatitis B Foundation and Catherine Freeland, MPH, Public Health Program Manager, Hepatitis B Foundation

 Day 2 – Friday July 28

11:30 AM:   Hepatitis B CME Provider Education Program
Amy Trang, PhD, Administrator, National Task Force on Hepatitis B
Focus on Asian Pacific Islander Americans

12:45 PM – 1:45 PM:  HBU Mini-Grantee Presentations
Moderator: Catherine Freeland, MPH, Public Health Program Manager, Hepatitis B Foundation

Not able to join the sessions with Facebook Live? Follow the conversation on Twitter using the #Hepbunite hashtag. Follow the events, Retweet and engage with event attendees and help us raise hepatitis B awareness in the U.S. and around the globe.

World Hepatitis Day is July 28th, and this Summit is a terrific opportunity to share with the world what we’re doing to help those living with hepatitis B in our communities. Other popular hashtags for World Hepatitis Day, and to raise hepatitis B awareness, include: #NOhep, #KnowHepB, #WorldHepatitisDay, #WorldHepDay, #WHD2017, #hepatitis, #hepatitisB, #HBV, #hepB, #justB. Connect with, follow and engage with fellow partners on twitter to keep the hep B conversation going during the Hep B United Summit and World Hepatitis Day events, and beyond.

Check out: @AAPCHOtweets, @AAHC_HOPEclinic, @AAHI_Info, @AAPInews, @apcaaz, @APIAHF, @ASIAOHIO, @CBWCHC, @cdchep, @cpacs, @HBIDC, @HepBFoundation, @HepBpolicy, @HepBProject, @HepBUnited, @HepBUnitedPhila, @HepFreeHawaii, @HHS_ViralHep, @MinorityHealth, @njhepb, @NVHR1, @nycHepB, @NYU_CSAAH, @sfhepbfree, @supportichs @wahainitiative @jlccrum

Missing from the list? Contact the foundation at info@hepb.org to be added.

Don’t forget to join the World Hepatitis Alliance  Thunderclap and register your World Hepatitis Day events  prior to World Hepatitis Day. Be sure to participate in the #ShowYourFace campaign.  and tell the world how you’re standing up against viral hepatitis.

Still have questions? Email us at info@hepb.org and we’ll help you get started!

Visit the Hep B United and Hepatitis B Foundation websites for more information about hepatitis B and related programs.

Learn Which Cancer, Arthritis or Asthma Drugs Can Reactivate Hepatitis B – Even If You’ve Cleared the Infection

Courtesy of Pixabay.
Courtesy of Pixabay.

By Christine Kukka

Drugs that suppress your immune system in order to treat cancers, rheumatoid arthritis, psoriasis, COPD and asthma can cause a life-threatening reactivation of your hepatitis B.

This dangerous viral rebound can occur if you are currently infected or even if you cleared the infection and now test negative for the hepatitis B surface antigen (HBsAg) and positive for the surface antibody (HBsAb).

These drugs weaken the immune system, which allows your infection to rebound with a vengeance, spiking your viral load and causing life-threatening liver damage within weeks of starting chemotherapy or high-dose steroids.

What’s behind this reactivation risk? Think herpes or chicken pox (shingles). You might get rid of the infections and the ugly blisters, but small amounts of virus remain and as we age and our immune systems weaken, they can reappear.

The hepatitis B virus (HBV) behaves similarly. When we lose HBsAg and/or develop surface antibodies, there are still small amounts of HBV lurking in our bodies. When we’re healthy, our immune systems effectively contain these trace amounts of virus, but old age, another serious medical condition or immune-suppressing drugs allow hepatitis B to reactivate.

Today, medical guidelines require doctors to test everyone they plan to treat with any immune-suppressing drugs for the hepatitis B core antibody (HBcAb) so they know who has been infected with hepatitis B. If a patient tests positive, doctors must run more tests to determine what risk the new drug will pose. When a patient is at risk of reactivation, doctors will simultaneously treat them with antivirals (either tenofovir or entecavir) and continue antiviral treatment for six more months after the immune-suppressing therapy ends to prevent reactivation.

U.S. CDC.
U.S. CDC.

This mandatory testing is important because some people don’t know they should tell their doctors about their past infection, and many don’t know they’re infected. Here is what happened to one person who contacted the Hepatitis B Foundation after her doctor failed to test her for hepatitis B:

“I recently had my first dose of chemotherapy and I did not mention (to) my oncologist that I was a carrier of hepatitis B, (because) I knew that it was not active. Then, after a week of chemo, I was really sick and got a high temperature. Then, my blood test came back (indicating) that my hepatitis B was reactivated. My liver doctor gave me medicine (an antiviral) to take to deactivate the virus.”

Her oncologist immediately stopped chemotherapy and monitored her HBV DNA (viral load) and liver enzymes (ALT/SGPT) to make sure the antiviral lowered her viral load before restarting chemotherapy. This example shows why it’s important to tell all doctors, including specialists, about a current or resolved hepatitis B infection. No one wants to be battling cancer and a reactivated hepatitis B infection at the same time.

According to experts, about 4.3 percent of people who have cleared hepatitis B will experience a reactivation when treated with immune-suppressing drugs.

Which drugs reactivate hepatitis B? Below is a summary of drugs that can reactivate your hepatitis B and require monitoring and preventive use of antivirals to reduce reactivation risk, according to American Gastroenterological Association (AGA) guidelines:

High-risk Drugs:

More than 10 percent of people with current or resolved hepatitis B infections will experience a dangerous reactivation if treated with:

  • Rituximab for non-Hodgkins lymphoma, or
  • Ofatumumab for chronic lymphocytic leukemia

Anyone with a current infection (HBsAg positive) treated with the following is also at high risk of reactivation:

  • Anthracycline derivatives (such as doxorubicin, epirubicin) used to treat cancers, including breast or bladder cancer, Kaposi’s sarcoma, lymphoma or acute lymphocytic leukemia, or,
  • Moderate-doses of prednisone/corticosteroids (10 to 20 mg daily) or high doses (more than 20 mg daily or equivalent) for four or more weeks. This steroid is used to treat inflammatory diseases including asthma, COPD, rheumatic disorders, ulcerative colitis, Crohn’s disease, MS, tuberculosis, shingles side effects, lupus, poison oak and tuberculosis among others.

Moderate-risk Drugs:

 Anyone with a resolved or current infection treated with the following drugs is at moderate risk of reactivation:

  • Tumor necrosis factor alpha inhibitors, such as etanercept, adalimumab, certolizumab, infliximab, for arthritis, inflammatory bowel disease, psoriasis and asthma;
  • Other cytokine or integrin inhibitors (such as abatacept, ustekinumab, natalizumab, vedolizumab), or
  • Tyrosine kinase inhibitors (such as imatinib, nilotinib)

 Also with a current infection treated is at moderate risk if treated with:

  • Low-dose (less than 10 mg prednisone daily or equivalent) corticosteroids for four or more weeks.

Also, anyone with a resolved infection treated with:

  • Moderate-dose (10—20 mg prednisone daily or equivalent) or high-dose (more than 20 mg prednisone daily or equivalent), or
  • Corticosteroids daily for four or more weeks, or anyone treated with anthracycline derivatives (eg, doxorubicin, epirubicin).

Low-risk Drugs:

Drugs that reactivate hepatitis B in fewer than 1 percent of patients include:

Current or previously-infected people treated with:

  • Traditional immunosuppressive drugs such as azathioprine, 6-mercaptopurine or methotrexate, or
  • Intra-articular corticosteroids
  • Any dose of oral corticosteroids daily for a week or less.

Previously-infected patients treated with:

  • Low-dose (less than 10 mg prednisone or equivalent) corticosteroids for four weeks or longer.

To see the entire list of immune-suppressing drugs, read the AGA guidelines.

Hepatitis B reactivation following successful hepatitis C treatment: New antivirals (such as Harvoni), used to cure hepatitis C do not suppress the immune system, but they leave coinfected people at risk of HBV reactivation once the dominant hepatitis C virus disappears. Coinfected patients need to be monitored carefully and treated with antivirals if their HBV rebounds.

The Medical Community Wakes Up to a Dangerous Threat to People with Hepatitis B – Coinfection with Hepatitis D

hep DBy Christine Kukka

In the U.S. and around the world, the medical community is finally acknowledging a hidden threat to people with hepatitis B – a virulent liver coinfection that requires the presence of the hepatitis B surface antigen (HBsAg) to survive.
Hepatitis D (Delta), which causes the most severe liver infection known to humans, infects between 15 to 20 million people worldwide and an estimated 20,000 people living with chronic hepatitis B in the U.S.
For years, health officials assumed hepatitis D did not threaten Americans and occurred primarily in Central Asia and Sub-Saharan Africa. However, recent U.S. Centers for Disease Control and Prevention (CDC) studies found 4 to 5 percent of Americans with chronic hepatitis B are also infected with hepatitis D.
As a result of these findings, researchers including Hepatitis B Foundation‘s Medical Director Dr. Robert Gish, are now pushing medical organizations to establish hepatitis D testing and monitoring guidelines so doctors will start testing patients for this dangerous liver disease.
Recently, the foundation sponsored a webinar, attended by dozens of healthcare providers, patients and officials from around the world, in which Dr. Gish outlined whom should be tested for hepatitis D, and how it should be treated. A new webinar that examines hepatitis D prevalence in the U.S. is scheduled for 3 p.m. (EST), Wednesday, June 28. To register for the webinar click here.
How do people get infected with hepatitis D? Infection occurs when people are exposed to blood and body fluids from someone with an active hepatitis D infection. Basically, they get both hepatitis B and D in one exposure. This is called an acute coinfection. Some healthy adults are able to clear both infections, but they often experience serious liver damage during the clearance or recovery phase.

Another way to become infected is if someone infected with chronic hepatitis B is exposed to someone with hepatitis D. This is called a superinfection, and in 90 percent of cases, people with chronic hepatitis B will also develop chronic hepatitis D.

Who is at risk of hepatitis D? Anyone with chronic hepatitis B who themselves or their family comes from Sub-Saharan Africa, China, Russia, Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan and the Amazonian River Basin should be tested. Hepatitis D rates in some of these countries can reach up to 30 percent in people infected with chronic hepatitis B.

Banner CurveWhat medical conditions suggest hepatitis D? Anyone with chronic hepatitis B who is not responding to antiviral treatment, or who has signs of liver damage even though they have a low viral load (HBV DNA below 2,000 IU/mL) should be tested. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out before testing for hepatitis D.
Often, people with hepatitis D have low viral loads (even if they are hepatitis B “e” antigen HBeAg-positive), but they have signs of liver damage, including elevated liver enzyme (ALT/SGPT) levels.

Do hepatitis B antivirals work against hepatitis D? No. The hepatitis D virus (HDV) is structurally different from the hepatitis B virus (HBV) and does not respond to tenofovir and entecavir used to treat hepatitis B. Hepatitis B antivirals will lower HBV DNA, but they don’t reduce HBsAg, which HDV need to thrive and reproduce.

How is hepatitis D treated? The only proven hepatitis D treatment is pegylated interferon. Interferon cures hepatitis D 15 to 25 percent of the time after one year of treatment. Once interferon clears hepatitis D, doctors treat patients who continue to be infected with HBV with antivirals. There are dozens of research companies now looking into hepatitis D treatment, and if researchers can find a cure for hepatitis B that eradicates HBsAg, it will also be effective against hepatitis D.

How should people with hepatitis D be monitored? According to Dr. Gish, doctors should:

  • Monitor patients’ ALT/SGPT and liver function at least every six months
  • Perform an ultrasound of the liver and conduct a liver cancer biomarker panel (including AFP, AFPL3% and DCP) every six months;
  • And, perform viral load (HBV DNA) and HDV RNA testing every six months.

How is hepatitis D prevented? The hepatitis B vaccine prevents hepatitis D infection, as does use of safe sex and safe injection practices. According to Dr. Gish, all hepatitis B-positive pregnant women should be tested for hepatitis D if they or their families are from a country with high rates of hepatitis D, or if they have signs of liver damage — even if they do not come from a region with high hepatitis D rates.

If a pregnant woman is infected with either hepatitis B and/or hepatitis D, immunizing her newborn with the first dose of the hepatitis B vaccine within 12 hours of birth and giving the baby a dose of HBIG (hepatitis B antibodies) will prevent both infections.

Bottom line, if you are infected with chronic hepatitis B, you should be tested for hepatitis D if:

  • You or your family comes from a region with high rates of hepatitis D; and/or
  • You have a low viral load, but you continue to have signs of liver damage, indicated by elevated ALT/SGPT or an ultrasound exam of your liver, if your doctor has ruled out fatty liver, NASH or alcohol-related liver damage.

Talk to your doctor about getting tested. Click here for a hepatitis D fact sheet to give to your doctor and click here for a patient-oriented fact sheet. An affordable hepatitis D test has recently become available in the U.S. For more information, click here.

  • Find answers to frequently-asked-questions about hepatitis D here.
  • To watch the webinar featuring Dr. Gish discussing the hidden, hepatitis D epidemic, click here.

When Can Hepatitis B Patients Stop Taking Antivirals? Experts Finally Have Some Answers

Image courtesy of foto76 at FreeDigitalPhotos.net
Image courtesy of foto76 at FreeDigitalPhotos.net

By Christine Kukka

With the help of antivirals, many patients today have undetectable viral load (HBV DNA), a relatively healthy liver and cleared the hepatitis B “e” antigen (HBeAg). So when can they consider stopping their daily entecavir or tenofovir pill?

For years, experts have admitted the endgame of antiviral treatment has been “ill-defined.” While antivirals reduce viral load and the risk of liver damage, they rarely cure people. Recently, after years of observing patients and with the help of better diagnostic tools, experts are getting better at identifying when might be safe to stop.

Historically, in addition to reducing viral load to undetectable levels, the goals of antiviral treatment were:

  • Triggering HBeAg seroconversion: About 21 percent of HBeAg-positive patients with liver damage treated with either tenofovir or entecavir for 12 months are able to lose the hepatitis B “e” antigen (HBeAg) and develop the “e” antibody (HBeAb). This HBeAg “seroconversion” indicates the immune system is fighting the infection and slowing viral replication.
  • And reducing liver damage and even clearing the hepatitis B surface antigen (HBsAg): About 1-3 percent of patients treated with antivirals lose HBsAg after years of treatment. This is called a “functional cure.” Unfortunately, if you have HBeAg-negative hepatitis B, only 1-2 percent of you will lose HBsAg after five to eight years of antiviral treatment.*

If you are among the lucky few who achieve HBeAg seroconversion or clear HBsAg, when is it safe to stop your daily antiviral? Here are the newest guidelines detailing when it may be safe to stop from the 2017 European Association for the Study of the Liver (EASL).

Image courtesy of Taoty at FreeDigitalPhotos.net
Image courtesy of Taoty at FreeDigitalPhotos.net

When is it safe to stop antivirals after you’ve achieved HBeAg seroconversion? Stop too early, and HBeAg can reappear. EASL recommend non-cirrhotic patients who experience HBeAg seroconversion and continue to have undetectable HBV DNA for 12 months longer can stop antivirals, as long as there is frequent monitoring after.

When is it safe to stop if you have HBeAg-negative hepatitis B and have undetectable viral load after years of antiviral treatment? EASL guidelines say non-cirrhotic, HBeAg-negative patients who have had at least three years of antiviral treatment, undetectable viral load and no signs of liver damage can stop treatment, as long as there is frequent follow-up monitoring.

When is it safe to stop antivirals if you’ve lost HBsAg? EASL recommends stopping antivirals after losing HBsAg, even if a patient does not develop the hepatitis B surface antibody (HBsAb). Recently, experts have decided that patients who lose HBsAg may be “functionally” cured, even if no surface antibodies appear.

Researchers also have a new way to determine if it’s safe for patients who had HBeAg seroconversion to stop antivirals – by measuring their HBsAg levels. The lower your HBsAg levels, the more likely you are to maintain HBeAg seroconversion after you stop antivirals.

For example, patients may be HBeAg-negative and have no signs of liver damage, but if their HBsAg levels remain high, these patients remain at risk of reactivation and should continue antiviral treatment. (Read more about HBsAg quantification testing here.)

These antiviral “stopping rules” are still in development and are still frustratingly vague for many patients, but slowly researchers are developing tools and compiling more research in order to develop better guidelines when it’s safe to stop the daily antiviral treatment plan.

 *The statistics and recommendations cited are found at EASL2017 Clinical Practice Guidelines.

Is Fasting Safe for People Living with Hepatitis B?

Courtesy of Pixabay.
Courtesy of Pixabay.

By Christine Kukka

If you have hepatitis B  and you’re considering fasting to lose weight, celebrate Ramadan or “detox” your liver, think again and talk to your doctor first.

Fasting can lower blood sugar, zap your energy, stress your immune system and be life-threatening for people suffering liver damage from viral hepatitis.

“Fasting for very limited periods of time may be safe if you have no signs of liver damage—indicated by normal liver enzymes (ALT/SGPT) or an ultrasound exam of the liver,” said Hepatitis B Foundation Medical Director Dr. Robert Gish. However, if you have liver damage (with ALT/SGPT levels exceeding 30 in men and 19 in women) and are taking medications to treat hepatitis B, research shows fasting may exacerbate liver damage.

Is limited fasting safe? Culturally, fasting is practiced to bring people closer to their spirituality and increase empathy for those living in poverty. For Muslims, fasting is practiced during Ramadan (beginning May 26 and ending June 25). During Ramadan, Muslims are instructed to abstain from eating and drinking from sunrise to sunset.

Image courtesy of Prakairoj at FreeDigitalPhotos.net.
Image courtesy of Prakairoj at FreeDigitalPhotos.net.

Historically, Islamic teachings allow pregnant women and people with serious medical conditions to break with tradition and eat and drink during daylight hours if their health is at risk. Rawalpindi Medical College Principal and Professor of Medicine Dr. Muhammad Umar of Pakistan explained that if hepatitis B and C patients are healthy, they can safely fast during the day. But if they are taking antiviral medications, or have serious liver damage such as cirrhosis (liver scarring) or ascites (distention of abdomen due to the accumulation of fluid in the peritoneal cavity) or liver cancer, fasting is not allowed.

There is little research about what impact limited fasting has on people with chronic hepatitis B. A report in the Journal of Virology that studied the effect of fasting in hepatitis B-infected transgenic mice found that fasting increased viral load and production of hepatitis B surface antigen (HBsAg). Other reports suggest that hepatitis B viral production in the liver is strongly influenced by a person’s nutritional intake.

Bottom line: Hepatitis B patients with liver damage should not fast, and “healthy” people living with chronic hepatitis B should talk to their doctors before embarking on any kind of fasting program.

Courtesy of Pixabay.
Courtesy of Pixabay.

Does fasting help us lose weight and reduce the risk of “fatty liver?” No. Nearly all medical experts agree fasting is not a healthy way to lose weight. When you fast, you lose fluid quickly, and your weight comes back quickly as soon as you start drinking water and hydrating yourself again.

Many experts say fasting makes it harder to lose weight because it slows your metabolic rate so you process food slower. While fasting during daylight hours for Ramadan may not pose a medical risk if you’re healthy, if you go for long periods without eating, your immune system weakens and isn’t able to suppress a hepatitis B infection effectively.

“A weight loss program that works should include proper nutrition, exercise and portion control,” explained Dr. Gish. He has designed a weight loss guide and contract for patients and doctors that offers guidelines for achieving healthy, long-term weight loss. Dr. Gish’s dieting recommendations include:

  • Keep a diary of everything you eat;
  • Exercise three hours a week;
  • Eat five small meals a day (150 to 200 calories each) using tea cup saucers for plates with no second servings;
  • And, use glass cups or bottles for drinks, instead of plastic bottles that may contain toxic bis-Phenols (BP).

Will fasting “detox” your body or liver? Most doctors say no. There there is no scientific evidence that shows fasting removes toxins from the body or the liver, because our organs are already very adept at doing that very effectively.

The liver, for example, is a natural detox center as long as it gets the water and nutrients needed to perform the job. Toxins don’t build up in the liver, it’s the liver’s job to break them down and dispose of them. Toxins can build up in fatty tissue, however, which is why a sustained, long-term weight-loss plan involving exercise and a healthy, low-fat diet is recommended.

Hepatitis B Foundation Executive Director Joan Block Steps Down, But First Shares Her Love Story

Tim and Joan Block
Tim and Joan Block

By Joan Block, RN, BSN, Executive Director and Co-Founder

The story of the Hepatitis B Foundation is a love story that’s never been told. In June, I will retire after 25 years of service, so now feels like the right time to share my personal story.

In 1987, I was diagnosed with hepatitis B. I had just married Tim (co-founder and president of the foundation and its research affiliate, the Baruch S. Blumberg Institute) when my doctor suggested I get tested for hepatitis B because I was born in Korea.

We were devastated by the diagnosis. As a young nurse in the 1980s, the only hepatitis B patients I knew were dying of liver failure or liver cancer. They were kept in isolation rooms where I had to wear a gown, gloves, and mask to even provide them with basic care.

This was a dark and scary time for us. There was nowhere to turn for information or support, and no available treatment. The prospect of our life together was overshadowed by fear and uncertainty.

My husband Tim, a research scientist, took immediate action by changing his focus to hepatitis B and began the quest to find a cure. We reached out to our close friends, Paul and Jan Witte, and together we decided to create a nonprofit organization dedicated to finding a cure for hepatitis B and helping those affected.

In 1991, the Hepatitis B Foundation was officially established. A quarter of a century later, the foundation has grown from a grassroots effort into the world’s leading nonprofit research and disease advocacy organization solely dedicated to hepatitis B.

Joan M. Block, Co-Founder and Executive Director
Joan M. Block, RN, BSN, Co-Founder and Executive Director

There are many reasons why I waited so long to share my personal story. At first, it was fear and shame. The stigma of having an infectious disease was strong, even though I had acquired hepatitis B at birth. Later, I wanted to keep the focus on the mission of the foundation, not on my personal story.

Today, however, I realize that there is a compelling need for people like myself to publicly share their stories. We need to break the silence around hepatitis B. Personal stories are a powerful tool to increase awareness, decrease stigma and end discrimination.

Although I am stepping down as executive director, I will continue to be passionately involved in advancing the foundation’s mission to find a cure. I will also use every opportunity to personally give voice to the more than 257 million people affected by hepatitis B worldwide.

If more of us can stand up and say without fear or hesitation, “I have hepatitis B,” then we will indeed contribute significantly to making hepatitis B history!

Thank you.

In recognition of Joan’s dedicated service, the Board of Directors has created the Joan Block Improving Lives Fund of the Hepatitis B Foundation. This fund will enable the foundation to advocate powerfully to increase research funds for a cure, end discrimination against those affected, and increase screening, prevention and care to save more lives from hepatitis B.

To honor Joan’s valuable legacy, please make a donation at our secure website by clicking here.

Join Us for a Twitter Interview! Meet Our Storytellers and Learn Their Hepatitis B Stories

#justB-Twittervu-blogThe Hepatitis B Foundation is proud to launch its storytelling campaign, sharing the stories of people living with and affected by hepatitis B. Join the Twitter interview at 2 p.m. (EST), Tuesday, May 16, hosted by the Hepatitis B Foundation and StoryCenter.

We will introduce three of our storytellers and their stories. Join the Twitter interview with the hashtag #justB and hear the poignant stories of real people living with hep B.

We will be introducing Jason, Bunmi and Maureen K. Jason, was in a difficult place in his life with addiction and depression when he learned of his hepatitis B and sought treatment. Bunmi, originally from Nigeria, talks about the loss of her father to hepatitis B- related liver cancer and the unwillingness of her family to talk about his disease. Maureen’s hepatitis B journey began with the adoption of her daughter, and the struggle with disclosure with family and friends. These brave storytellers are ready to put an end to the silence surrounding hepatitis B.

Below are the topics scheduled for discussion during the Twitter interview. How can you contribute to the conversation? Please support Jason, Bunmi and Maureen K. as they disclose their hepatitis B stories on social media. Consider sharing parts of your hep B story or pose a question. Join the conversation with the hashtag #justB.

T1. Tell us about hepatitis B, the storytelling campaign and what the foundation hopes to achieve for those affected by hepatitis B.
T2. What makes hepatitis B different from other diseases, and how do these stories highlight the challenges associated with hepatitis B?
T3. We’d like to open it up to our storytellers. Please tell us about your story, and what makes hepatitis B different from other diseases.
T4. How has hepatitis B affected your life?
T5. What made you decide to share your hepatitis B story? Were you concerned with the stigma associated with hepatitis B?
T6. Describe your experience meeting with others impacted by hepatitis B.
T7. If there is one message you would like to get across to others about coping with #hepatitis B, what would it be?
T8: What would you tell others that are struggling with whether or not they should share their hepatitis B story?

Co-hosts and special guest handles include:

Be sure to watch Jason, Bunmi and MaureenK‘s stories.

Are you just getting started with Twitter and want to know how to join the conversation?  Type #justB in the search box of the Twitter application and click on the “latest option” to follow the twitter view.

#justB in search box

 

 

 

 

 

 

 

You can prepare any questions or tweets you might have for the above participants in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.

The topics are labeled T1, T2, etc. so please respond/answer specific topic by using A1, A2, etc. in front of your tweets. Remember to include the #justB hashtag, which is not case sensitive, in all of your tweets.

Looking forward to sharing the stories of our guests on the Twitter view. Please welcome them by joining the conversation!

People Affected by Hepatitis B Share Stories of Family Secrets, Stigma and Diagnoses That Came Too Late

Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.
Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.

In an innovative storytelling initiative, people living with chronic hepatitis B open their hearts and share their stories of family secrets, stigma and diagnoses that came too late as they confront the impact of hepatitis B on themselves and the people they love.

The Hepatitis B Foundation, working with StoryCenter, has created unique video stories that share the experiences of people affected by hepatitis B, which affects one-third of the world’s population. The video stories, which debut May 1 in recognition of Hepatitis Awareness Month, are designed to raise awareness about the liver disease that affects 2 million in the U.S.

There is no better way to understand the human toll hepatitis B takes than to hear directly from those affected. Most people know very little about this disease and up to 75 percent of people living with hepatitis B don’t know they’re infected. The hope is that these stories will put a human face on this infection and help improve testing, vaccination and treatment.

One storytelling video, featuring former ABC 7 News anchor Alan Wang of Berkeley, CA, talks about how doctors fail to test people for hepatitis B. It was after the CEO of Newsworthy Media suffered liver damage that a doctor tested him for hepatitis B. “It was only because I (had) a medical reporter friend who connected me to a leading hepatologist that I got the attention I needed,” Wang, 49, explains in his story. After his diagnosis, he encouraged family members to be tested and his mother and siblings were also found to be infected by the disease that is easily transmitted at birth.

justB“We were left to connect the dots because the medical profession is failing to address an epidemic that kills more than 700,000 people a year,” he explained. “It’s bad enough that hepatitis B is a silent killer with few symptoms until it’s too late. It’s also ignored by Asian cultures that consider talk about deadly diseases to be taboo.”

While a safe and effective vaccine that prevents hepatitis B has been available since 1982, many Americans did not have access to the vaccine. John Ellis Jr., another hepatitis B storyteller who lives in Pensacola, FL, was diagnosed with chronic hepatitis B at age 16. He, like many people living with hepatitis B, does not know how he became infected.

“When I was first diagnosed, I was shocked the doctor couldn’t tell me how I contracted it, as if finding out how I contracted hepatitis B would somehow cure me of it. As I grow older, what’s most important to me is maintaining my health.” Ellis explains in his story that he wants to be, “bigger than his diagnosis.” He does not want hepatitis to hold him back or define him. He is an entrepreneur and he has organized a charity bike ride to raise awareness and funding for research.

Another featured storyteller is pharmacist Bunmi Daramaja, of Elkridge, MD, who grew up in Nigeria and emigrated to the U.S. She struggled with her family’s reluctance to discuss her father’s death from liver cancer, resulting from chronic hepatitis B.

“Stigma is everywhere (in my African culture),” she explained in her story. “People don’t think about the facts of how the virus is transmitted– they are afraid to even touch someone who has it. Many people don’t even want to get tested, because treatment is either not available or costs too much money. They say, ‘What’s the point?’ This needs to change.

“In the U.S., the services are here, and I want to make sure that people of African origin know there are resources. I want to end this silence,” she explained.

The Hepatitis B Foundation’s Storytelling page helps tell the story about an infection in the U.S. that is under-diagnosed, under-treated and remains stigmatized across America.

Advocate Nadine Shiroma Champions Civil Rights for All Affected by Hepatitis B

Nadine Shiroma and her grandchild.
Nadine Shiroma and her grandchild.

By Nadine Shiroma

I am a retiree and volunteer working to address hepatitis B discrimination, which involves a serious, relatively unknown chronic disease that impacts Asian-American and Pacific Islander American (AAPIA) immigrants and refugees who are often isolated by culture and language, which makes this discrimination especially egregious.

As a fifth-generation AAPIA, I’d heard of hepatitis B but was not aware that it leads to cirrhosis or liver cancer or that AAPIAs make up 50 percent of the country’s estimated 2 million hepatitis B cases, but represent less than 5 percent of the U.S. population.

These facts came into sharp focus in 2010, when a college senior was devastated to learn she would not be permitted to enroll in a healthcare program due to her chronic hepatitis B. Nothing in the school’s admissions policy or information published by the profession’s national admissions coordinating agency had prepared the student for this. When the student informed me that an older friend with hepatitis B was completing a similar healthcare program at a different institution, I advised her to challenge her school’s exclusion policy.

The issue raised many questions that called for research and consultation with hepatitis B specialists and community health and civil rights advocates to find out how and why schools were permitted to have such different hepatitis B policies. I also sought to compare various institutional policies with their respective state licensing laws for providers with hepatitis B. Fortunately, I was referred to an attorney who had an understanding of the disease who challenged the school’s exclusion policy. This led to the school’s implementation of a new, progressive policy for students with chronic hepatitis B.

Though gratified with the outcome for this student, I feared other students with hepatitis B would face similar discrimination, because too many medical school policies barring enrollment of students with hepatitis B were undisclosed. Future victims might not know how or where to access assistance or legal help. Given the World Health Organization’s map of global regions with high rates of hepatitis B and the current patterns of U.S. immigration, I believed hepatitis B discrimination would soon impact other immigrant/refugee communities.

My initial contact with the Hepatitis B Foundation in 2010 developed into a working relationship that won justice for five additional medical and dental students who contacted us between 2011 and 2013.

At the urging of the foundation and hepatitis B specialists,  the Centers for Disease Control and Prevention (CDC) revised and updated its 20-year old policy for infected healthcare workers; and the disability complaint I filed with the Department of Justice (DOJ) resulted in a Settlement Agreement for two students and a Technical Assistance Letter jointly issued by three federal agencies to inform healthcare schools of their responsibilities to accommodate individuals with hepatitis B and point out that failure to comply could also violate Title VI, which prohibits discrimination on the basis of race, ethnicity or national origin.

Hepatitis B civil rights advocacy is now focused on policies of all U.S. military services, including the Coast Guard, Public Health Service and the National Oceanic and Atmospheric Administration, which ban individuals with hepatitis B from joining.

Between 2013 and 2016, we advised nine active duty personnel and students who were not permitted to enlist for military service or scholarship programs or were discharged from active duty or a U.S. military academy due to hepatitis B. We continue to advocate for the Department of Defense to revise the policies that prohibit the people with chronic hepatitis B and establish reasonable, science-based accommodation policies for existing or future personnel who are diagnosed with chronic hepatitis B

Continuing hepatitis B education and civil rights challenges

Most immigrants and refugees do not understand the seriousness of the silent disease or the importance of hepatitis B screening. If diagnosed with hepatitis B, they often fear being treated as ‘pariahs’ in a society where they already feel like outsiders; or they worry that others in their family will be stigmatized or that hepatitis B will be used as an excuse to prevent immigrants from entering the U.S. Still others may be silenced by a code of silence within their professions.

Adding complexity to hepatitis B education and outreach are the diverse languages and cultures of the immigrant/refugee communities, along with the economic and social disparities experienced by so many families who start new lives in the U.S. living in relative isolation with limited English proficiency and few financial resources.

Lest we think hepatitis B discrimination is limited to Asian- and African-American and immigrant/refugee communities, new pockets of hepatitis B infection linked to the opioid epidemic have been reported in rural regions. Outbreaks of hepatitis B infection in majority white, non-immigrant, economically-depressed regions suggest that some of those infected may not have been immunized due to a lack of knowledge or healthcare access. These are social and economic disparities that mirror the disparities experienced by many immigrant/refugee families.

Like their healthier peers, teens and young adults with hepatitis B seek opportunities to fulfill their potential, earn a living wage and improve their lives. To this end, hepatitis B advocates are working to protect the rights of infected persons and ensure that our schools and institutions, and public and private employers administer reasonable, science-based chronic hepatitis B policies and accommodations.

Nadine Shiroma is a community civil and voting rights advocate and policy advisor to the Hepatitis B Foundation. She can be contacted at nadine.shiroma@gmail.com.

Diagnosed in March, 2009, with stage 4 metastatic non-Hodgkin’s lymphoma, Nadine spent the remainder of the year undergoing chemotherapy and recurrent hospitalizations. “That I lived and recovered is due to doctors at the City of Hope Cancer Research Center, my family and especially my husband and daughter,” she recalled. “Assisting the college senior in 2010 helped me discover a new normalcy. On that day in 2011, when a new, progressive chronic hepatitis B accommodation policy was published by the healthcare school that previously excluded students with hepatitis B, I told myself, ‘This is why I lived.’”

 

How to Find a Liver Specialist Who Really Knows Hepatitis B

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

By Christine Kukka

If you have chronic hepatitis B or are newly-diagnosed, it’s important to see a liver specialist who has experience with hepatitis B.

Having a specialist with hepatitis B expertise on your team not only safeguards your health, it also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who gets the test results and calls to break the news. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. They may recommend a specialist who accepts your insurance or practices in the same healthcare system, but you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The foundation has a Physician Directory of liver specialists who treat hepatitis B around the world. These doctors have voluntarily signed up  for the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistant communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours-drive from where you live, but distance doesn’t have to be a deal breaker. Many people see a specialist for a first visit, and afterwards simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life. ”

Prepare for your visit: Before you see the specialist, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.