Hep B Blog
Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Living with Hepatitis B

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

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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.

Living with Hepatitis B

Is Fasting Safe for People Living with Hepatitis B?

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Courtesy of Pixabay.
Courtesy of Pixabay.

 

 

 

 

 

 

 

 

 

Updated: 3-13-2023

 

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

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

“Fasting for limited periods of time during the day 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 cirrhosis (with ALT/SGPT levels exceeding 35 in men and 25 in women) and are taking medications to treat hepatitis B, research shows fasting may be overwhelming to your liver and may worsen liver damage. 

Dr. Gish added “Diabetes and fatty liver is quite common with hepatitis B. Fasting can cause disruption in sugar balance in your body and can cause hypoglycemia and this can worsen the fatty liver condition. If you take diabetes medication, this may unbalance your blood glucose and cause dizziness and low blood pressure.”.  

Is limited fasting safe? Fasting is practiced to bring people closer to their spirituality and increase empathy for those living in poverty. For Muslims, fasting is practiced during the month of Ramadan. During Ramadan, Muslims are instructed to abstain from eating and drinking from sunrise to sunset. This may account for up to 16-18 hours of continuous fasting (depending on where a person lives), for a period of 29 or 30 days (depending on the Lunar Calendar).   

 

 

 

 

 

Islamic teachings allow pregnant persons and people with serious medical conditions to break with the 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 (buildup of fluid in the abdomen which may cause severe pain or swelling) or liver cancer, fasting is not allowed as it may jeopardize their health. 

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). You can find the report here Other reports suggest that hepatitis B viral production in the liver is strongly influenced by a person’s nutritional intake. 

If you are considering observing Ramadan, please consider that for about 30 days, there will be fasting, interrupted sleep with Iftar (breaking fast) and Suhor (meal before sunrise) and potentially more physical activities with Tarawih Prayers (additional night prayers practiced during the month of Ramadan). Please talk to your doctor and discuss the entire Ramadan experience with them, and what it means to you considering living with hepatitis B and other illnesses you may have. It might also be helpful to talk to your Imam or spiritual mentor and see what they advise.  

Watch the video below to listen to an imam’s perspective on fasting while sick.  

What Should You Do if You Feel Sick During Ramadan? – Mufti Abdul Wahab Waheed | Ramadan FAQ 

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 planning to fast. 

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 teacup saucers for plates with no second servings; 
  • 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 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 Advocacy, Hepatitis B Diagnosis & Monitoring

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

HAM Chat Image

 

 

 

 

 

 

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 Advocacy, Living with Hepatitis B

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

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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.

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

Ten Things Women and Mothers Can Do to Combat Hepatitis B

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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. Worldwide an estimated 90 percent of people with chronic hepatitis B don’t know they’re infected.  In the U.S. only 25% are aware of their infection. Unfortunately, many doctors won’t test you for hepatitis B unless you request the test. If you or your parents come from or live in 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 if 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. Get tested first. 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, especially if you are HBeAg positive.
  • 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! Start explaining HBV by reading the Hepatitis Victoria “Hep B Hero” book for children two to six years of age.

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. Hepatitis Victoria recently launched their “Little Hep B Hero” book, an engaging story teaching children 6-12 year olds about hepatitis B.

 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.

Hepatitis B Advocacy, Living with Hepatitis B

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!

Hepatitis B Advocacy, Living with Hepatitis B

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.

Hepatitis B Advocacy

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

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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.

Hepatitis B Advocacy

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.’”

 

Hepatitis B Advocacy, Living with Hepatitis B

Time to End the Military’s Ban on Enlistees with Hepatitis B

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Image courtesy of vectorolie at FreeDigitalPhotos.net.
Image courtesy of vectorolie at FreeDigitalPhotos.net.

By Christine Kukka

One of the most glaring civil rights abuses facing people with hepatitis B in the United States today is the military’s continued refusal to allow anyone with chronic hepatitis B to enlist.

This prohibition continues, despite the fact that all military personnel are vaccinated against hepatitis B, and scientific data shows hepatitis B is not spread through casual contact.

“Our brave servicemen and women deserve nothing less than the best, yet many qualified individuals are being prevented from serving in specific roles and/or being promoted within the military’s ranks. That’s simply wrong,” said U.S. Rep. Barbara Lee, D-Calif., in a letter challenging the military’s Uniform Code of Military Justice prohibits people with hepatitis B and C and HIV from enlisting in the Navy, Army, Air Force, Coast Guard, Marine Corps and National Oceanic and Atmospheric Administration.

This outdated and scientifically-baseless Department of Defense policy damages the civil liberties of many Americans.

  • Asian and Pacific Islander Americans, African and Middle Eastern immigrants and other ethnic groups are disproportionately impacted by hepatitis B. For example, Asian-Americans make up less than 5 percent of the total U.S. population but account for more than 50 percent of the 2 million people living with hepatitis B cases in the U.S.
  • Immigrants and their children are also disproportionately affected by hepatitis B, due to the lack of vaccinations in their countries of origin. As a result, they are barred from military service, which offers a path to citizenship.

What is especially heart-breaking are the young men and women who work hard to get into prestigious military academies, only to be dismissed when it’s discovered they have hepatitis B.

military-662872_1920This military code historically barred people with serious medical conditions because they were considered unfit to serve, suspected to incur high healthcare costs and could pose an infection risk to fellow soldiers.

The code prohibits enlistees with the, “Presence of … current acute or chronic hepatitis carrier state, hepatitis in the preceding six months or persistence of symptoms after six months, or objective evidence of impairment of liver function.”

But most people with chronic hepatitis B who want to enlist are healthy, have no liver damage, do not pose an infection risk to others, and are capable of performing the same duties required of their fellow recruits. Clearly, military policy has not caught up with current science.

This discriminatory policy is difficult to challenge, despite the best efforts of advocates including Rep. Lee and U.S. Rep. Ileana Ros-Lehtinen (R–FL).

The Americans with Disabilities Act, which prohibits discrimination against people with disabilities and chronic diseases such as HIV and hepatitis B and C, unfortunately has no jurisdiction over the Department of Defense.

Although the Department of Justice and CDC have issued clear, science-based guidelines that find hepatitis B-infected healthcare providers to pose no infection threat to patients or coworkers, the military continues to practice its discriminatory policies, which rob the military of talented and motivated recruits.

It is time to change these outdated and discriminatory policies. There are many good men and women waiting, willing and able.

Baruch S. Blumberg Institute