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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.

You Have Hepatitis B, Will Liver-Detox Diets or Supplements Help? Experts Weigh In

Courtesy of Pixabay.
Courtesy of Pixabay.

By Christine Kukka

Manufacturers and health “gurus” around the world market liver detox diets and supplements that promise to remove toxins, reduce inflammation, strengthen the immune system and help you lose weight. But do they help people with chronic hepatitis B?

A team of Australian researchers examined these claims and concluded, “At present, there is no compelling evidence to support the use of detox diets for weight management or toxin elimination.

“Considering the financial costs to consumers, unsubstantiated claims and potential health risks of detox products, they should be discouraged by health professionals and subject to independent regulatory review and monitoring,” the authors wrote in their report published in the Journal of Human Nutrition and Dietetics.

Let’s look at some of the diets and products the researchers evaluated.

  • The Cleanser/Lemon Detox Diet that requires 10 days of drinking only lemon juice, water, cayenne pepper and tree syrup, along with sea salt water and a mild laxative herbal tea.

    Courtesy of Pixabay.
    Courtesy of Pixabay.
  • The Liver Cleansing Diet featuring vegetarian, high-fiber, low-fat, dairy-free, minimally processed food for eight weeks, along with “liver tonics and Epsom salts.”
  • Martha’s Vineyard Detox Diet: A 21-day regimen features vegetable juice and soup, herbal tea and special powders, tablets, cocktails and digestive enzymes.
  • Dr Oz’s 48-hour Weekend Cleanse: A two-day program featuring quinoa, vegetables, fruit juices and smoothies, vegetable broth and dandelion root tea, and;
  • The Hubbard purification rundown: This requires increasing doses of niacin with a range of A, D, C, E and B vitamins, a variety of minerals and a blend of polyunsaturated oils and mandates that adherents spend five hours in a hot sauna daily.

According to researchers, none of these plans have been evaluated scientifically, which includes using a control group that receives a placebo instead of the treatment. The L. Ron Hubbard plan, promoted by the Church of Scientology, received some scientific evaluation after the purification protocol was applied to 14 rescue workers who were exposed to high levels of chemicals after the 9/11 collapse of the World Trade Center.

The program used niacin supplements, sweating in a sauna and physical exercise to get rid of toxins stored in body fat — which is where nearly all toxins end up – not in liver cells.

“The firemen’s scores on several memory tests reportedly improved after the intervention but the sample size was small and no control group was included,” researchers noted. The Church of Scientology used a similar program and employed a small control group, but the length of the treatment varied widely (ranging from 11 to 89 days). “Rather dubiously, the average increase in IQ in the experimental group was reported to be 6.7 points, despite the average intervention length being only 31 days,” researchers noted.

As with herbal supplements sold around the world, there is also no regulation of the detox diet industry.

“At present, the European Union has refused to authorize the detoxification claims of a dozen nutritional substances (including green coffee, grapefruit and taurine), although there are hundreds of other ‘detox’ products that do not yet appear on the Health and Nutrition Claims Register,” researchers wrote.

More alarming, it appears these companies are now using new marketing terms, such as “reinvention” and “revamp,” instead of detox and cleansing, which makes it difficult for government agencies to regulate these products.

“In some cases, the components of detox products may not match their labels, which is a potentially dangerous situation,” researchers noted. “In Spain, a 50-year-old man died from manganese poisoning after consuming Epsom salts as part of a liver cleansing diet.”

So why are these diets and supplements so popular?

“The seductive power of detox diets presumably lies in their promise of purification and redemption, which are ideals that are deep-rooted in human psychology,” researchers observed. “These diets … are highly reminiscent of the religious fasts that have been popular throughout human history. Unfortunately, equating food with sin, guilt and contamination is likely to set up an unhealthy relationship with nutrition. There is no doubt that sustained healthy habits are of greater long-term value than the quick fixes offered by commercial detox diets.”

Celebrate Father’s Day By Protecting Your and Your Family’s Health — Get Tested for Hepatitis B

William and his family.
William and his family. Click here to watch his story.

By Christine Kukka

After our daughter was diagnosed with chronic hepatitis B 20 years ago, my doctor explained that every household member, including my husband, had to be tested for the liver infection that’s transmitted by direct contact with blood and body fluids. ASAP.

The good news was my daughter was healthy and had no signs of liver damage, but my husband and I were shaken to the core by her diagnosis. Weighed down by worry and ignorance, I feared we might all be infected and faced a death sentence.

I drove out to my husband’s work and we went for a walk. I explained what the doctor had said and explained he had to get tested. It was one of those moments when fear and denial play out over the course of a conversation. Like everyone, he was afraid to get tested. He felt fine, at first he didn’t want to know whether he was infected. For a few moments, he thought ignorance might be less painful than finding out he had hepatitis B.

And, as in most families, this disclosure wasn’t easy. He had children from his first marriage who were with us every weekend and they had to be tested too. He would have to share this information with his former wife. This disclosure was going to upend two households. After a few minutes of waffling and processing, he did what courageous fathers do. He got tested and made sure his children were tested too.

Poster-GetTested_SuperDad-2-235x300The news was all good. His children had been immunized and were fine, he was not infected and was immediately immunized. Today, we are all doing fine, including our daughter.

Every father’s day, I think about that moment, when my husband refused to  retreat into denial, and put his family’s health ahead of his initial impulse to hide from a frightening and messy situation. It is what being a good father is all about, and it takes courage.

For another story about hepatitis B and fatherhood, please view the Storyteller video featuring William’s Story: #justB Dad by clicking here.  

Excited by the impending birth of his first child, William decided to plan for his family’s financial future. He was shocked to learn through a required health insurance blood test that he had hepatitis B. He spent sleepless nights wondering how he contracted the virus and whether it was a death sentence. After wading through dense layers of information online, he went in for more tests and was reassured by a caring provider that with monitoring, dietary changes and an active lifestyle, he would live a long life.

He realized that knowing where hepatitis B came from isn’t as important as focusing on staying healthy.

The CDC offers short video clips that feature a conversation between a daughter and her parents, with the daughter explaining why Asian-Americans should be tested for hepatitis B in English, Cantonese, Mandarin, Vietnamese and Korean. A high percentage of Asian and African immigrants have hepatitis B, but most don’t know they are infected. To view these clips, visit: http://www.cdc.gov/knowhepatitisb/materials.htm

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.

Join a Twitter Chat: National Organizations Share Highlights From Hepatitis Awareness Month and Strategies for Successful Events

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Join Hep B United, the National Viral Hepatitis Roundtable, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter #HepChat at 2 p.m. (EST) Thursday, June 8. The chat will highlight Hepatitis Awareness Month outreach events and allow hepatitis B and C partner organizations to share their successes, challenges and lessons learned from their efforts.

Continue reading "Join a Twitter Chat: National Organizations Share Highlights From Hepatitis Awareness Month and Strategies for Successful Events"

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.

Ten Things Women and Mothers Can Do to Combat Hepatitis B

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.

By Christine Kukka

Don’t know your hepatitis B status? Get tested. An estimated 75 percent of people with chronic hepatitis B don’t know they’re infected. Unfortunately, many doctors won’t test you for hepatitis B unless you request the test. If you or your parents come from a country with high rates of hepatitis B, or if you’ve been sexually active or have other risk factors , get tested. It could save your life.

Get tested for sexually-transmitted infections (STIs). More than half of us will have an STI in our lifetime, and in the U.S. about half of new hepatitis B infections are sexually-transmitted. Many doctors don’t test for STIs. In a national survey of U.S. physicians, fewer than one-third routinely screened patients for STIs. To make matters worse, many women are afraid to talk to doctors about their sexual history and STI risk. Be brave, ask your doctor to test you for STIs and hepatitis B if you think you are at risk.

Photo by Amanda Mills of CDC.
Photo by Amanda Mills of CDC.

Get immunized against hepatitis B. Not sure if you’ve been immunized during childhood? Tell your healthcare provider and get tested and immunized. Even you were vaccinated in the past, getting a second vaccine series won’t harm you. If your partner has hepatitis B, getting vaccinated is critical to protect your health. Practice safe sex until you have received all three shots. About one to two months after your third shot, get tested for the hepatitis B surface antibody (called titers). If you have at least 10 mIU/mL of surface antibodies, you are permanently protected against this serious liver disease.

Infected? In Love? Disclose. When you disclose your hepatitis B status before sex – even if it’s safe sex with a condom – you don’t jeopardize your partner’s health or his/her trust in you. Talking about hepatitis B helps reduce the stigma surrounding this infection and may prompt the person to get vaccinated. How do you tell a potential partner that you have hepatitis B? Calmly and carefully. Do some research so you have a thorough understanding about hepatitis B, which will make it easier for you to calmly explain it. The more you know, the less you fear, and the more comfortable you will be in dispelling their fears and conveying a sense of truth and integrity.

Insist on sterile medical and tattoo equipment. Hepatitis B can live for several days on hard surfaces, including improperly-sterilized and re-used syringes and other medical devices. Whether you’re going for a tattoo or to a dentist or doctor’s office, it is your right to insist that all equipment is brand new (ask to see it removed from protective packaging) and properly sterilized. Visit a licensed, professional tattoo parlor and make sure all tattoo equipment has been sterilized and that needles come out of new packages.

Image courtesy of patrisyu at FreeDigitalPhotos.net
Image courtesy of patrisyu at FreeDigitalPhotos.net

Infected and pregnant? Protect your baby from hepatitis B.

  • Make sure your newborn gets the hepatitis B vaccine within 12 hours of birth. Nearly all hepatitis B-infected women will pass the infection onto their children during delivery, but you can stop that infection cycle. In about 90 percent of cases, immediate immunization will prevent infection. In some countries, it may be difficult to get just the single hepatitis B vaccine dose, but if you are able to immunize your baby at birth, you will have protected your child against a potentially dangerous liver disease. If you live in an area where HBIG (hepatitis B antibodies) is available, make sure your newborn is also given a dose of HBIG at birth, this adds another layer of protection against infection.
  • Get your viral load (HBV DNA) tested early in your pregnancy. Some women with high viral loads (exceeding 200,000 IU/mL or 1 million copies/mL) are at high risk of infecting their newborns, even if the baby receives the first vaccine dose within 12 hours of birth. Ask your doctor to test your viral load, if it’s high, medical guidelines recommend treatment with the antiviral tenofovir during the last three months of your pregnancy to lower your viral load. If you doctor doesn’t test your viral load, be assertive and ask for the test.
  • Breastfeeding is OK, even if you have hepatitis B. If you’re infected with hepatitis B, you can safely breastfeed your baby, as long as the baby was vaccinated against hepatitis B at birth.
Maureen and her two daughters
Maureen and her two daughters

Your children infected? Don’t wait to start talking to them about hepatitis B. You need to start talking to them about germs and how to keep themselves and others safe when they’re young. (Listen to Jin’s Story #justB You about growing up with hepatitis B.) This conversation will be one of the hardest discussions you will ever have with your child, and you’ll be talking about it often in the years ahead, but you can do it!

To hear how other mothers handled talking about hepatitis B with their children, visit our Storytelling page and click on Maureen’s Story #justB Brave  and Maureen K’s Story #just B Assertive  to hear how these mothers navigated issues of disclosure and stigma with their daughters.

 Talk to your children about sex and safe sex practices. It’s critical to educate young people about sexual health and STIs. If we want our sons and daughters to feel empowered to take care of their sexual health, we have to change the culture that dictates the way we talk – or don’t talk – about sex. That means removing denial, uncertainty and shame so we have better conversations about sexual health, sexual assault prevention and STIs. It’s also important to encourage our children to have frank sexual health discussions with one another.

Take care of your health, get monitored regularly: It is important to get your hepatitis B monitored regularly – at least every year and more often if you have liver damage. Women living with hepatitis B tend to have lower rates of liver damage than men because estrogen appears to help protect the liver. But even if we lead a healthy lifestyle and avoid alcohol and cigarettes, as we age our immune system weakens and our viral load (HBV DNA) can start to rise. There is no cure yet for hepatitis B, but there are effective drugs that lower viral load and reduce the risk of liver damage.

Renseley and her husband.
Renseley and her husband.

Be happy. A mother or woman who is well rested, enjoys a healthy diet, gets plenty of exercise, has good relationships with friends and family members and knows how to ask for help when she needs it, is far better equipped to be happy and be the best mother she can be. It isn’t selfish to take care of yourself. Tough times happen, and sometimes a friend or family member may need us, and we will need to be strong during difficult times. If we take care of ourselves and ask for help, in the long run happiness will prevail. For a profile in joy and courage while fighting hepatitis B in her family, watch Renseley’s Story #justB Strong.

The Hepatitis B Foundation recently launched its storytelling campaign, sharing the stories of people affected by hepatitis B. Join a Twitter interview including Maureen K, parent of a daughter with hepatitis B, at 2 p.m. (EST), Tuesday, May 16, hosted by the Hepatitis B Foundation and StoryCenter. Click here for more information.

How Do We Raise Awareness About Hepatitis B Without Reinforcing Racist Stereotypes?

2013-05-17_HepbUnitedEventBy Christine Kukka

When my daughter thinks about how active she should be in raising awareness about hepatitis B,  she gets tripped up by racial identity and politics.

Recently, she attended a workshop where people living with hepatitis B told their stories. It was empowering and energizing, and then she went home to a state where the majority are white, the governor claims immigrants are bringing in new diseases, and no one has ever heard about hepatitis B.

“Suddenly, I feel paralyzed,” she told me. “I look at the other people in my hepatitis B group and all of us were Asian or Black. I’m afraid if I tell my story here at home that everyone will assume everyone who’s Asian has hepatitis B.”

Instead of increasing white America’s compassion and empathy towards people with hepatitis B, she fears it might make them more afraid of people of color. Her fears are understandable. In this era of Trump, hate crimes and backlash against immigrants have increased. She’s afraid speaking out might unwittingly reinforce simmering racist stereotypes. She wonders if she has that much courage.

She’s worried about how it will affect her personally. Already she sees some clients she works with gravitate and open up more to her white coworkers. “I don’t know if I’m over-thinking it all, and feeling overwhelmed about how to handle this,” she confided.

There is a story about a Asian-American researcher who worked on hepatitis B for decades. When she conducted some independent screening in her community and discovered that a large percentage of Korean-Americans tested positive for hepatitis B, she was fearful. She never published her findings, she was afraid it would fuel racism against Asian-American immigrants. She chose self-censorship instead.

Much has been written lately about how much more empathy the American public and some politicians appear to have toward the rural opiate addiction crisis now that it has a “white face,” given that addiction in inner cities has decimated generations of African-Americans for decades.

Does my daughter intuitively know that America has far more sympathy (and dedicates more funding) for diseases that affect white and middle-class communities than minority populations?

I try to give her another take on the situation, suggesting that the human map of hepatitis B is defined by access to healthcare. People in poor regions of the world don’t have access to the hepatitis B vaccine birth dose, which must be administered within 12 hours of birth to break the mother-to-child infection cycle, or to sterile syringes and medical equipment.

I explain it’s the same in rural America. The hepatitis B vaccine has been available since 1982 and recommended for all children and adolescents, yet today there is an uptick in new hepatitis B infections among injecting drug users. Uninsured adults who didn’t have access to preventive healthcare and the hepatitis B vaccine growing up are now getting infected from the opioid epidemic. Just like Africa and Asia, medical insurance and access to healthcare defines who lives and dies.

Just like Africa and Asia, in rural and low-income America, access to insurance and healthcare defines who lives and dies.

In the late 1980s, a young group of AIDS activists created ACT Up, a noisy, boisterous group that fought the government and big pharma in order to speed up the AIDS drug approval process. They even took over the National Institutes of Health office at one point and unfurled a banner that read: Silence = Death.

For a long time, white America thought everyone who was gay had AIDS. But over time, they stopped making that assumption. It takes time, education, and tireless and selfless advocacy. We all do what we can, when we can.

The Terrible Price Paid When Doctors Fail to Test and Treat Patients for Hepatitis B

Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.
Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.

By Christine Kukka

The day we arrived home from China, my husband and I brought our four-month-old adopted daughter to a pediatrician for a check-up. The doctor looked at my daughter’s health records from China, saw she had tested negative for hepatitis B, and said, “Good, I don’t have to test her for that.”

About a year later, I got sick, very sick. I felt nauseous, my stomach hurt and I felt bone tired. I gradually recovered and chalked it up to a bad case of flu.

When my daughter was 2 years old, I read on an adoption email list that some children were testing positive for hepatitis B stateside, though their medical reports in China had given them a clean bill of health. During her next check-up, I asked the pediatrician to test her for hepatitis B. The test result came back positive. A week later, so did mine.

My daughter had chronic hepatitis B, and I, who had donated blood regularly until I became a busy parent, had  an acute case, and cleared the infection. Our story, unfortunately, is not uncommon. Across the U.S., many primary care doctors fail to test at-risk patients for hepatitis B.

I live in a rural, New England state where there are not many people from countries with high rates of hepatitis B. Our pediatrician didn’t know that it can take several weeks after exposure  for an infection to show up in a lab test. She didn’t know that China’s medical records weren’t reliable. She knows it now, but many providers still don’t.

Over the years, I have heard many similar stories with worse outcomes. In one case, a young woman born in South Korea suffered epilepsy and her doctor treated her with a common seizure medication without first screening her for liver infection or damage. She died in her early 20s from liver cancer. The epilepsy drug accelerated her hepatitis B-related liver disease.

A recent article published on the Monthly Prescribing Reference website, describes how a primary care provider was sued for malpractice after he failed to monitor a patient for liver damage despite the fact the Asian-American patient told him he had hepatitis B in his teens. The patient, who was treated by the doctor for more than 15 years, died from liver cancer resulting from untreated hepatitis B.

In addition to these stories, there are numerous studies published in medical journals that show doctors often fail to test patients for hepatitis B or treat them appropriately when hepatitis B is diagnosed. Even liver experts who should know better often don’t follow medical guidelines that recommend antiviral treatment for hepatitis B-related liver damage.

I often wonder why there is this breakdown in hepatitis B care. I wonder if it stems from racism or prejudice. Many people with hepatitis B are people of color, recent immigrants, gay, or low-income. These patients can be challenging for doctors, especially when providers have little experience with hepatitis B, but that’s no excuse.

Over the years, I have accompanied my daughter to her medical appointments and often remind doctors what labs they should order and what the latest monitoring guidelines are. The best of them admit they don’t know how to treat hepatitis B and sit down and read the latest guidelines and discuss a care plan with my daughter. The worse simply do whatever I ask, and I am no doctor.

martin luther king blue I have found one of the best tools available  are software programs that link a patient’s electronic medical record to current medical guidelines. It makes it easy for doctors to know what tests should be ordered, especially if they have never treated hepatitis B before. But they need to have the software and the desire to use it.

I appreciate that doctors are human, over-worked and are driven by an assembly line business model that makes it hard to pause and research a new medical condition. However, the human price paid for lapses in care is terrible, and far more costly considering the expense of treating liver cancer, compared to running the right tests and prescribing the correct antiviral treatment today.

In the U.S., about two-thirds of people living with chronic hepatitis B don’t know they’re infected. They don’t have the money, the insurance coverage, or access to the right doctors who will test and treat them, and make sure their family members are tested and vaccinated. An estimated 20 percent of these people will die prematurely from liver disease. And today, as I listen to the news, I am afraid it’s only going to get worse.