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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.

How to Navigate Disclosure, Denial and Drinking with Hepatitis B During the Holidays

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

By Christine Kukka

With the holidays come  family reunions and parties that can set the stage for some big emotional challenges for people living with hepatitis B.

  • Do we disclose our hepatitis B to our families or keep quiet?
  • Do we remind relatives to get tested and/or treated, or quietly endure their denial?
  • And, can we resist the host who insists everyone should be drinking alcohol with him?

Is this the holiday when we finally tell our parents or siblings about our hepatitis B?

First, take your family’s cultural temperature towards hepatitis B. Historically, in many cultures people with hepatitis B were shunned and could not marry, attend college or advance professionally. If your family still holds some of these baseless beliefs, be prepared to do some educating as you try to dispel their fears and prejudices. Come armed with printed information, website addresses and other material to bolster your family-focused public health campaign.

If you were infected at birth, you may have family members who are also infected. The most valuable gift you may give them is your disclosure and your education, especially if it leads them to get tested, vaccinated and treated.

If you suspect you are the only one in your family who is infected because of a past medical procedures that transmitted the infection, or sexual encounters or injecting drug use, think carefully about disclosing. Are your family members open and accepting? Will they suspend judgement and be supportive? Perhaps you should tell only one or two relatives whom you can trust, or stick to your community of friends. If you have doubts, erring on the side of caution for the time being may be best.

Should you encourage family members to get tested, vaccinated or treated?

If you know hepatitis B runs in your family, then your parents, uncles, aunts and siblings could also be infected. Should you bring up hepatitis B during dinner and encourage them to be treated?

Many people find denial a far more comfortable option than facing the possibility of having hepatitis B, which is why nearly two-thirds of people with chronic hepatitis B remain undiagnosed and untreated. So how do we bring up hepatitis B without sending everyone running from the dinner table?

  • Bring up an interesting fact, “Hey, did you hear that one in 12 Asian-Americans have hepatitis B and two in three don’t know it?”
  • Or ask about a relative’s health history. “I was wondering about grandpa in Vietnam, you said he died from liver problems, do you think it was hepatitis B?”
  • Or try breaking through the stereotypes surrounding hepatitis B. “Everyone thinks you get hepatitis B because you’re promiscuous or do drugs, but actually most Asian-Americans got it at birth.”

Choose a time when there won’t be many distractions. Try talking to a few relatives ahead of time so they are prepared to be supportive when you broach the topic with your family.

Ultimately, we can’t change other people. Our relatives may simply continue to refuse testing and treatment despite our best intentions. We don’t have to let them off the hook completely, but we must accept they are doing the best they can. If we keep our relationships with them open and cordial, they may be willing to talk to us in the future when they are ready to get tested. To view a video of a daughter telling her parents why they should be tested, click here.

How do you politely refuse the host who insists that you drink?

Practice saying no: Often there are people at a party or event who take it as a personal insult if you do not join them and drink alcohol. You need to prepare for their rudeness and be ready to firmly say no. This can take practice, so do some role-playing if needed ahead of time. It gets easier with time.

Prepare a reason for not drinking: Sometimes, those annoying hosts, friends or relatives just won’t give up, so you may have to lie. “Sorry I’m taking medication and I can’t drink.” Or, “My stomach is upset and I want to be able to enjoy all this food.” You never have to disclose your hepatitis B infection in this casual social setting, but you can come up with another reason not to drink.

Leave the event early if you feel uncomfortable. Over the course of a party, people may get more intoxicated and it might get harder to turn down drinks. Consider leaving the party before people reach this stage, besides it’s no fun to be at a party with drunk people when you’re sober anyway.

Find others who are not drinking. Search out people who are not drinking at the event. Those are the people you may want to talk to and enjoy.

Choose a non-alcohol drink: If you’re at a bar or party, no one will know that your seltzer water with a slice of lime is not a gin and tonic. Many bars now serve non-alcoholic beverages so no one will know your drink does not contain alcohol.

The most important thing to do is to not pick up a drink no matter what. One drink all too easily leads to another. Your liver will thank you.

The Ugly Intersection of Prejudice, Immigration, and Hepatitis B

By Christine Kukka

 Image courtesy of xedos4 at FreeDigitalPhotos.net.
Image courtesy of xedos4 at FreeDigitalPhotos.net.

A few weeks ago, an ill-informed New England governor proclaimed illegal immigrants were bringing in infectious diseases, including hepatitis, HIV, and tuberculosis. Recently, similar anti-immigration, fear-mongering from presidential candidates has filled the airways.

For hundreds of years, disease has been used as reasons to stop immigration to the United States. During the early 1800s, officials claimed the Irish brought cholera into the country. The Italians were believed to carry polio and tuberculosis was called the Jewish disease. In 1900, the Asian-American community in San Francisco was believed to be infected with bubonic plague that posed a threat to public health. Residents were subjected to mandatory injections with an experimental drug until a court order halted the local public health campaign.

Throughout the 19th and 20th century, “politics was saturated with attacks on immigrants as diseased intruders to the body politic,” wrote American University history professor Alan M. Kraut in Foreign Bodies: The Perennial Negotiation over Health and Culture in a Nation of Immigrants. This dialogue led to revision of the 1882 Immigration Act to exclude, “persons suffering from a loathsome or a dangerous contagious disease” from entry into the United States. Continue reading "The Ugly Intersection of Prejudice, Immigration, and Hepatitis B"

Romance in the Air? Take a Deep Breath and Disclose

Image courtesy of tiverylucky, at FreeDigitalPhotos.net
Image courtesy of tiverylucky, at FreeDigitalPhotos.net

Valentine’s Day may be a time to celebrate romance, but first you need a relationship. When you have chronic hepatitis B, starting a relationship and initiating sex is fraught with stress, hard disclosures, and the potential for break-up before an intimate relationship can even begin.

Recently, the Hepatitis B Foundation received this heart-breaking post from a 33 year-old man who thought his “inactive” hepatitis B could not be transmitted sexually.

“I’ve lived my entire life with this, but always thought it was just a normal thing (my mother said many Asians have it) and thought it was nothing to be concerned about as I never showed symptoms,” he wrote. “My doctor never said anything either. I lived my life thinking being a carrier was nothing out of the ordinary, and that I … could transfer it via blood, but could not sexually. Continue reading "Romance in the Air? Take a Deep Breath and Disclose"

Navigating Our Emotions When We’re First Diagnosed with Hepatitis B

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.

When we’re first diagnosed with hepatitis B, our physical health isn’t the only thing we need to focus on. Many of us experience powerful surges of fear, anger, sadness, powerlessness, depression, and anxiety.

No matter what you’re feeling, you have a right to feel whatever emotions are welling up – sometimes unexpectedly – inside you. There are no right or wrong feelings, they just are, and it’s up to you to decide what choices you make and how to respond to them.

When my daughter was first diagnosed, she was a toddler and happened to be coming down with a cold. I knew nothing about hepatitis B and was convinced she would soon die from it given her crankiness, lethargy, and nonstop sleeping.

Within a day or two, she was her smiling, energetic self again, and I happily slipped into denial. Surely the test was wrong or there was a mix-up in the result. My husband dragged his feet for weeks before he agreed to be screened for hepatitis B so great was his denial and fear.

Denial is a normal first reaction, it can give us some  breathing room to get used to the idea that we’re infected. But denial can also be dangerous, especially if we’re in a sexual relationship with someone and don’t take precautions. Denial can be dangerous when we hide our infection and don’t tell our family members or partners, even though they may have been exposed. Denial is dangerous when we don’t tell our parents, who may not know they’re infected and unknowingly passed the virus to us at birth.

It’s important to talk out our feelings with a doctor, a therapist, or a friend you trust. We need to move through denial so we can begin to receive the care and support we need, and talk to others who may also be at risk.

Anger is another common and natural feeling after a diagnosis. It’s OK to get upset about how we or our family members were infected, or get angry that our parents or lovers didn’t know they had the virus and infected us. Try to talk about your anger with counselors or friends, get some exercise to work off your tension and avoid situations—including drugs or alcohol—that can ignite festering emotions.

It’s normal to feel sad, and sometimes the sadness doesn’t go away quickly. If you feel prolonged sadness, anxiety, or fear, or find you’re gaining or losing weight or sleeping more or less than usual, it’s time to talk to someone who can help.

Fear and anxiety are common because we don’t know what’s going to happen next. If you’ve just been diagnosed, you may have to wait six months for another test to show whether you were recently infected and have acute (short-term) or were infected as a child and have chronic (long-term) hepatitis B. That wait can be insufferable.

Our stress can cause a host of physical symptoms, ranging from headaches to fatigue, that may have nothing to do with hepatitis B. It’s important to talk to your doctor about these symptoms so you know what is hepatitis B-related, and what’s caused by worry and fears.

At this early stage, many of us want to get rid of the virus as soon as possible and we’re willing to try any supplement or treatment available, even if our doctors tell us we’re healthy and don’t need any treatment. At this early diagnosis point, we just need to take care of ourselves, eat healthy foods, avoid alcohol and cigarettes, and get monitored regularly, even though what we really want is a magic pill that will make this infection go away.

In normal grief cycles, there is a point of acceptance. But I’m not sure we totally ever accept this loss of our “perfect” health, and our ability to have sexual relations, give birth, or drink a glass of wine without thinking of the shadow hepatitis B casts over these activities.

As a wise friend has pointed out, we need to accept that hepatitis B is part of us, but it doesn’t have to define us. Perhaps getting to that realization is the journey we begin when we read that first lab report and hear the diagnosis.

For support and information from other people living with hepatitis B, join the Hepatitis B Information and Support Email List at  http://hblist.net

 

Ten Things People with Hepatitis B Need to Know in 2016

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

In 2015, doctors continued to unlock the mysteries of hepatitis B and uncovered promising new treatments. Armed with new information, here are 10 things we can do in 2016 to safeguard our health and help prevent the spread of hepatitis B.

  1. Get monitored regularly. No one likes a blood draw or to be reminded they have hepatitis B, but it’s important that you’re tested annually or more often if you have a high viral load and/or signs of liver damage. There’s no cure yet, but there are effective treatment options with more in the pipeline. So be brave, protect your health, and go to the lab for a blood test.
  2. If you’ve been prescribed an antiviral, don’t forget to take it. Taking a pill every day is tedious and it’s tempting to skip it, but failing to take your daily antiviral reduces its effectiveness and can lead to drug resistance. The hepatitis B virus is a master at mutating to escape whatever is attacking it. Forgetting to take your daily pill can lead to an uptick in your viral load and liver damage. Stay strong, take your daily pill, and keep that virus undetectable.
  3. Face it, antivirals are a long-term commitment. Until a cure is developed, antivirals—either tenofovir (Viread) or entecavir (Baraclude)—are the best treatment to quickly reduce both viral load (HBV DNA) and liver damage. But they work for only as long as we take them, and once we start, we are usually committed to years of treatment. Quitting antivirals before we’ve achieved undetectable viral load and lost the hepatitis B surface antigen (HBsAg) often results in a resurgence of both viral load and liver damage. Antivirals are a long-term treatment that help prolong our lives.
  4. Demand to be screened for liver cancer. Some experts say current medical guidelines that recommend when we should be screened for liver cancer  don’t go far enough to protect us. So take charge of your health and ask for a liver cancer screen, which includes a semi-annual blood test and an ultrasound.  Hepatitis B-infected Asian men (or of Asian descent) over age 40 years and Asian women over age 50 years, patients with a family history of liver cancer, patients with cirrhosis, and Africans over the age of 20 should all be screened. Think you’re not at risk for cancer because you take antivirals? Think again. Antivirals help reduce liver damage, but if you’ve had cirrhosis or are older, the risk of liver cancer remains.
  5. If someone promises a new cure or treatment that sounds too good to be true….it probably is. In our search to be rid of hepatitis B, we may be tempted to yield to clever marketing and try a supplement that promises to cure us. But first, do your homework and practice precaution. To check out an herbal supplement, visit the National Center for Complementary and Integrative Health’s website to see what scientific evidence exists for a supplement and talk to your doctor. There is no magic bullet that will cure hepatitis B. Experts hope to find one soon, but for now be patient and stay skeptical. If you want to safeguard your health, eat healthy foods and avoid alcohol and cigarettes.
  6. Experts say a cure is coming … so stay informed about new drug developments and clinical trials. There is lots happening on the research front. To find out what drugs are in the development pipeline, visit the Hepatitis B Foundation’s Drug Watch page for the latest news. You can also find out if you qualify for a clinical trial. Expensive blood work, treatment medications, and doctor’s visits are usually free-of-charge for those accepted into a study. The foundation features a list of hepatitis B-related clinical trials that are recruiting patients in the U.S. and around the world at its Clinical Trials page. You could become part of the cure.
  7. Pregnant with hepatitis B? Get your viral load tested and ask your doctor about antivirals. In November, the American Association for the Study of Liver Disease (AASLD) for the first time recommended that pregnant women with viral loads (HBV DNA) higher than 200,000 IU/mL (or 1 million copies/mL) receive an antiviral (either tenofovir or telbivudine) starting at their 28th week of pregnancy. The antivirals won’t hurt you or your baby and will reduce the risk that your baby will be infected with hepatitis B to nearly zero, as long as your baby gets the first dose of the hepatitis B vaccine and a dose of HBIG (hepatitis B antibodies) within 12 hours of birth.
  8. Fight discrimination against hepatitis B and know your rights. Hepatitis B should never be a barrier to the education or job you want. Sadly, ignorance and stigma remains in the U.S. and abroad. It depends on us, our friends, and our family, to stand up and fight for our civil rights. We can’t back down. If we don’t fight, who will?
  9. Practice safe sex and never re-use needles. Today, in some areas of the U.S., hepatitis B is increasing—even though a safe and effective vaccine exists. Unfortunately, not everyone is immunized and the infection is still getting transmitted sexually. In the midst of America’s heroin epidemic, it’s also spreading when syringes are re-used and shared. Do you want to end hepatitis B? Make sure your friends and family members know how to prevent sexually-transmitted infections (even if those conversations are challenging, their lives may depend on it) and support needle exchange programs in your region and state. Countless studies show that when needle exchange programs are available, HIV, hepatitis B and C rates decline! It saves lives and healthcare dollars!
  10. Be brave, disclose, and get your friends, family, and lovers screened for hepatitis B and vaccinated. Yes, it will be one of the hardest conversations you will ever have, but if you are infected with hepatitis B, you need to disclose your infection to people who may be at risk. If you just discovered you have chronic hepatitis B, which you may have contracted at birth, you need to tell your siblings and your mother and get them screened and immunized if needed. Dating someone, and about to take the next step? You need to disclose ahead of time and give them information and choices. It builds trust and it’s the right thing to do. You would want the same for yourself.

Continue reading "Ten Things People with Hepatitis B Need to Know in 2016"

Is Your Family Getting Together for the Holidays? Time to Discover Your Medical History

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

When we have chronic hepatitis B, knowing our family medical history can give us an inside edge to fight this infection.

Hepatitis B is an infection that often runs in families, and knowing how our parents or grandparents handled this liver disease can give us insider information about our own genetic prospects with hepatitis B.

Experts estimate that more than half of us worldwide became infected at birth. Our mothers may have been infected with hepatitis B and immunization, which can prevent infection if administered within 12 hours of birth, was not available to us as newborns, nor to our mothers or grandmothers. Continue reading "Is Your Family Getting Together for the Holidays? Time to Discover Your Medical History"

“How Did You Get Hepatitis B?” Why We Should Answer

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

By Christine Kukka

Telling someone you have hepatitis B is almost always followed by the question, “how did you get it?”

The question can feel like an invasion of privacy or an indictment. Behind the question lurks a desire for reassurance that hepatitis B won’t happen to them, but of course it can. And that’s why we should answer and tell our story.

On a global scale, the story of hepatitis B is the story of humanity. How we and our forebears became infected results from centuries of human migrations, the transatlantic slave trade, political upheaval, poverty, re-used medical devices and ineffective public health policies. Continue reading "“How Did You Get Hepatitis B?” Why We Should Answer"

The Hepatitis B Patient Community Loses Its “Mom”

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

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

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

Preparing for College, Dating and Disclosing Hepatitis B

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

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

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