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Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Liver Cancer, Living with Hepatitis B

Celebrating the Holidays with Hepatitis B

Image courtesy of Pixabay

The holidays are a joyous time as family and friends gather for parties, dinners and get-togethers. However, they can also be a difficult, stressful time on so many levels, and especially for those who might not yet have disclosed their hepatitis B to loved ones.  You may have been recently diagnosed, or decided this is the year you’re going to let them know about your status. If you’re not there yet, that’s okay, but consider making this the year you choose to disclose.

Enjoy and celebrate the holiday cheer, but …alcoholic beverages may be an issue during this time, and it may be tempting to indulge. The most important thing to do is not pick up that drink no matter what! Hepatitis B and alcohol is a dangerous combination. Here are some tips that may help you politely refuse a drink:

  • Practice saying no
  • Prepare a reason for not drinking (i.e., “Sorry, I’m taking mediation and I can’t drink.” or “My stomach is upset and I want to enjoy all this food.”)
  • Leave the event early if you feel uncomfortable.
  • Find others who are not drinking.
  • Choose a non-alcoholic drink – sparkling water with fruit is a healthy option!
  • Volunteer to be the designated driver. You may suddenly find you have many friends!

You might want to think long and hard about disclosing your status to coworkers and acquaintances.  Only you know for sure, but family and close friends can become a new source of support for you moving forward. If the holidays inspire you to share your status, you may start with talking about your family’s health history. Even though hepatitis B is not genetic and does not run in families like some other chronic diseases, it is possible that you may have hepatitis B because you were exposed to it from an infected family member, possibly at birth or by accidental household exposure; 90% of babies and 50% of young children who were infected with hepatitis B become chronically infected. It is also important to talk about hepatitis B if there is a history of liver disease and cancer in your family. Having hepatitis B can put you at an increased risk of developing liver disease and liver cancer during your lifetime.

Here are some other considerations:

  • Choose a time when there will not be too many distractions.
  • Think about whether your loved ones will be open and accepting.
  • Bring up an interesting fact to open up the conversation.
  • Ask a relative about their health history.
  • Try to break stereotypes surrounding hepatitis B.
  • Encourage your family members to get tested, vaccinated, or treated.
  • Family members may mention that “an uncle had liver problems”, or “died of cancer”, but not know if it was related to hepatitis B.
  • Be prepared with a printed fact sheet or video from the Hepatitis B Foundation or material from the Know Hepatitis B campaign!

Disclosure can be scary and make you anxious! When you are disclosing to a loved one, their response is out of your control, but their response might surprise you. Be prepared with simple explanations about hepatitis B. A Google search may highlight frightening statistics, so be sure to reassure loved ones that HBV is controllable and manageable.

Take a look at the videos from our #justB storytellers about how HBV has impacted their lives, and share them with family members. We must all do what we can to break the silence about hepatitis B so we can get more people tested and into care, and reduce stigma and discrimination!

For more tips on how to navigate the holidays with hepatitis B, check out our previous post here.

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

It’s Flu Season! Did you get your shot?

Flu season is upon us! It usually ranges from the winter into early spring. It’s important that you get your flu shot, especially if you or a family member has a chronic disease such as hepatitis B.

The Centers for Disease Control and Prevention (CDC) recommends that everyone 6 months of age and older get the flu vaccine every year. Flu viruses change constantly from season to season and can even mutate during a single flu season. It takes 2 weeks for antibodies to develop, so get your flu shot today!

There are some people who cannot get the flu shot, including certain age groups, those with health complications, and those with allergies. However, there are still ways people can protect against getting sick. Be sure to wash your hands to prevent the spread of germs. If you feel you are sick, stay home from work or school.

While we all know antiviral drugs are effective against the hepatitis B virus, researchers have also developed antivirals that can help us fight the flu once it is confirmed someone are infected. People at high risk of serious flu complications (such as children younger than 2 years, adults 65 and older, pregnant women, and people with chronic hepatitis B) and people who simply get very sick with the flu should talk to their doctor about getting one of three available flu antiviral drugs–oseltamivir, zanamivir, or peramivir.

According to CDC, prompt treatment with a flu antiviral can mean the difference between having a mild case versus a very serious one that can potentially land you in the hospital.

Treatment with antivirals works best when begun within 48 hours of getting sick, but can still help if administered later during your illness. Antivirals are effective in all age and risk groups. Studies show some doctors do not prescribe antiviral drugs to people at high risk of complications from the flu, so be assertive and ask your doctor for them if you have the flu!

It’s time to get your flu shot! It will help you, your family, and friends get protected against the flu. To find out where you can get a flu shot, click here.

For more information about hepatitis B and the flu vaccine, check out our previous posts on the flu here, here, and here.

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

HIV/HBV Co-Infection

World AIDS Day was last Friday, December 1st. It is a day dedicated to raising awareness about HIV and AIDS. However, it is also a great opportunity to discuss the possibility of coinfection with hepatitis B virus, HBV.

 Dr. John Ward, MD, Director, Division of Viral Hepatitis, CDC talks about hepatitis B, hepatitis C, and HIV epidemics in the United States.

Hepatitis B (HBV) and HIV/AIDs have similar modes of transmission. They can be transmitted through direct contact with blood, or sexual transmission (both heterosexual and MSM). Unfortunately, people who are high risk for HIV are also at risk for HBV, though hepatitis B is 50-100 times more infectious than HIV. Fortunately hepatitis B is a vaccine preventable disease and the vaccine is recommended for individuals living with chronic HIV.

Nearly one third of people who are infected with HIV are also infected with hepatitis B or hepatitis C (HCV).2 To break down the numbers further, about 10% of people with HIV also have hepatitis B, and about  25% of people with HIV also have hepatitis C.2 Liver complications due to HBV and HCV infections have become the most common non-AIDS-related cause of death for people who are HIV-positive.3

Who is at risk of HIV and HBV co-infection? Because both infections have similar transmission routes, injection drug use and unprotected sex (sex without condoms) are risk factors for both infections.4 However, there are additional risk factors for HIV and  for HBV that put people at risk4

It is important that people who are at risk of both diseases are tested! HIV-positive people who are exposed to HBV are more likely to develop a chronic HBV infection and other liver associated complications, such as liver-related morbidity and mortality if they are infected with HBV.1

If a person is co-infected with both HBV and HIV, management of both diseases can be complicated, so a visit to the appropriate specialists is vital.3 Some anti-retrovirals, which are usually prescribed to treat HIV, can eventually lead to antiviral resistance or liver-associated problems.3 One or both infections will require treatment and must be carefully managed.  Treatment differs from person to person .4

It is also important to hear about the perspectives of those who are living with co-infections. As a part of our #justB: Real People Sharing their Stories of Hepatitis B storytelling campaign, Jason shares his experience of living with both hepatitis B and HIV/AIDs.

To learn more about HIV and viral hepatitis coinfection, go here. For more #justB videos, go here.

References:

  1. Centers for Disease Control and Prevention (CDC). (2017, Sept). HIV/AIDS and Viral Hepatitis. Retrieved from: https://www.cdc.gov/hepatitis/populations/hiv.htm
  2. Centers for Disease Control and Prevention (CDC). (2017, June). HIV and Viral Hepatitis. Retrieved from: https://www.cdc.gov/hiv/pdf/library/factsheets/hiv-viral-hepatitis.pdf
  3. Weibaum, C.M., Williams, I., Mast, E.E., Wang, S.A., Finelli, L., Wasley, A., Neitzel, S.M, & Ward, J.W. (2008). Recommendations forMorbidity and Mortality Weekly Report (MMWR), 57(RR08), 1-20. Retrieved from: Identification and Public Health Management of Persons with Chronic Hepatitis B Infection. https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5708a1.htm

Hepatitis B Prevention, Hepatitis B Treatment, Liver Cancer, News

Special Film Screening: “Hilleman: A Perilous Quest to Save the World’s Children”

The Hepatitis B Foundation was excited to share a special film screening of Hilleman: A Perilous Quest to Save the World’s Children.

Packed house at the film screening with opening remarks by Chari Cohen, DrPH, MPH

The documentary film, produced by The Vaccine Makers Project, follows the unknown story of a man who “had more of an impact on [people’s] lives compared to Einstein.” The film tells the story of a courageous and gutsy scientist, Dr. Maurice R. Hilleman, and the elimination of diseases of children. With his unwavering determination, Dr. Hilleman invented the first-ever vaccine against a human cancer (the hepatitis B vaccine), developed the measles-mumps-rubella (MMR) combination vaccine, and prevented pandemic flu. During World War II he developed an urgently needed vaccine for Japanese B encephalitis in 30 days.

 

The hepatitis B virus was also featured in the documentary.

He is responsible for more than half of the vaccines children receive today and is credited with saving more than eight million lives every year. Now through exclusive interviews with Dr. Hilleman and his peers, rare archival footage, and 3-D animation, this new documentary puts a human face to vaccine science, revealing the character that drove this bold, complex, and heroic man.

When parents began choosing not to vaccinate their children in the 1990s, a cruel irony became clear; Hilleman’s unprecedented successes have allowed us to forget just how devastating childhood diseases can be. The documentary reminds us by allowing us to see these diseases as part of the film.

Chari Cohen, DrPH, MPH introducing the panelists. L-R: Timothy Block, PhD (Moderator), Donald Rayne Mitchell, David Oshinsky, PhD, Walter Tsou , MD, MPH, Paul Offit, MD

Community members from Philadelphia and Bucks County came for the film screening as they enjoyed fun movie snacks. They also enjoyed a panel discussion moderated by Timothy Block, PhD, with the documentary director and esteemed representatives from scientific community. Expert panelists included Donald Rayne Mitchell, Paul Offit, MD, David Oshinsky, PhD, and Walter Tsou, MD, MPH. They shared their thoughts on the documentary, Dr. Hilleman’s life, and the future of vaccines. Mitchell and Dr. Offit expressed that the documentary film was created to “inspire a kid or to get into [scientific] work someday,” and to “put a human face on vaccines.”

For more information about the film, click here. If you are interested in learning more about the hepatitis B vaccine, click here.

Be on the look out for a special “preview” vlog of the film screening at the end of December 2017.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver Cancer, Living with Hepatitis B, Uncategorized

Sharing Your Story – Your Family’s Story

Sharing Your Story – Your Family’s Story

Image courtesy of Good Free Photos

Thanksgiving is not only a day to eat turkey or remind us to remember what we are thankful for; it is also National Family History Day!!1 This holiday can be used an opportunity for families to discuss and record health problems that run through the family, as this helps us live longer and healthier. 1

There are many chronic diseases that may run through multiple generations of a family. 1 Doctors can predict whether or not you could have a chronic disease just by knowing if your parents, grandparents, and other relatives have had it. 1 That is why knowing your family health history is an important and powerful screening tool.1 You can change unhealthy behaviors, reduce your risk of diseases, and know when you should be screened when you learn about what diseases run through your family. 2

Image courtesy of Wikimedia Commons

Hepatitis B is not like other chronic diseases, where if your parents have it, your genes make you more prone to it. Hepatitis B is not genetic. The hepatitis B virus is transmitted through blood and infected body fluids. This can happen through direct blood-to-blood contact, unprotected sex, body piercings or tattooing, intravenous drug use, and as a result of unsafe medical or dental procedures. It can also be transmitted from an hepatitis B positive mother to her baby at birth.

Even though hepatitis B is not genetic, you should still include it in your family health history discussion! The most common method of hepatitis B transmission worldwide is from mother-to-child due to the blood exchange that happens during child birth. Pregnant women who are infected with hepatitis B can transmit the virus to their newborns during delivery. 90% of babies exposed to hepatitis B at birth will become chronically infected with hepatitis B, which increases their risk of serious liver disease later in life. Knowing your family’s hepatitis B history can help you figure out if you and other loved ones should get screened for or vaccinated to protect against hepatitis B.

Image courtesy of Wikimedia Commons

Knowing if you have a family history of liver cancer can also be important, since hepatitis B is one of the leading causes of liver cancer. If your family has a history of hepatitis B related liver cancer, then you may have a greater risk of developing liver damage or liver cancer if you have hepatitis B. Be sure to discuss a family history of liver cancer with your liver specialist.

If you need some advice on how to start the conversation about your family health history, read more here. You can also use the US Department of Health & Human Services’s My Family Health Portrait Web tool to help start this dialogue and learn how to share family history information at a future doctor visit.

You don’t need to wait until this Thanksgiving to talk about your family health history. You can talk to your family about your family health history and hepatitis B status RIGHT NOW!

References:

  1. https://www.hhs.gov/programs/prevention-and-wellness/family-health-history/about-family-health-history/index.html
  2. https://www.cdc.gov/genomics/famhistory/famhist_basics.htm

 

 

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

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

Image courtesy of Pixabay

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

Hepatitis B Advocacy, Hepatitis B Prevention, Hepatitis B Treatment

Hepatitis B Foundation Mini-Grantees 2016

At the Hepatitis B Foundation, we have many research and programs throughout the year. With the Association of Asian Pacific Community Health Organizations (AAPCHO), we co-founded and co-chair Hep B United, a national coalition dedicated to reducing the health disparities associated with hepatitis B by increasing awareness, screening, vaccination, and linkage to care for high-risk communities across the United States. The coalition works to reduce the impact of hepatitis B through prevention and education efforts, addressing perinatal transmission, improving screening and linkage to care, contributing to national surveillance data, and advocating on a national level.

Last year, the Hepatitis B Foundation offered mini-grants for one year to Hep B United coalition partners working on hepatitis B education, screening and linkage to care activities. These grants ranged between $5,000 to $10,000 each. The mini-grants were offered to enhance the capacity of Hep B United coalition partners to conduct HBV education, testing and linkage to care in their local Asian American, Native Hawaiian and Pacific Islander (AA & NHPI) communities to advance the hepatitis B priority areas of the U.S. Department of Health and Human Services’ National Viral Hepatitis Action Plan (VHAP).

Courtesy of CPACS

The 2016-17 project year offered grants to 9 coalition partners, which included Center for Pan Asian Community Services, Inc (CPACS), Hepatitis B Initiative-Minnesota (HBI-MN), Midwest Asian Health Association (MAHA), Hepatitis B Initiative-DC (HBI-DC), Asian Services in Action (ASIA), Asian American Community Services (AACS), Asian Pacific Health Foundation (APHF), and HOPE Clinic. Together, Hep B United coalition partners screened 4,649 people, educated and reached out to 11,884 people, and distributed 13,112 handouts. Some coalition partners were featured in  newspapers, on TV with 496,189 views, and in a social media video. Mini-grantees also participated in activities such as developing key partnerships in local communities, providing linkage to care, and conducting provider training. One coalition partner also screened the “Be About It” documentary.

For 2017-2018 mini-grants, six Hep B United coalition partners (listed below) were recently awarded mini-grants. We are excited to kick off these projects and look forward to their future endeavors and results.

·     Asian American Community Services (Columbus, OH) -AACS’ Live Healthy – Hep Free project will use the H+EAL model to increase HBV education and awareness and encourage testing by targeting high school students and their parents.

·       Asian Pacific Community in Action (Phoenix, AZ) – APCA will be organizing community town hall events in collaboration with the #justB campaign across Maricopa County to collect and share stories that promote increased awareness and proactive approaches to treatment for hepatitis B.

·       Asian Pacific Health Foundation (San Diego, CA) – APHF will be working to increase community knowledge and awareness of hepatitis B, determine gaps in knowledge, develop in-language education materials, and provide hepatitis B screening within high-risk communities throughout San Diego.

·       Asian Services in Action (Cleveland, OH) – ASIA will be using community health outreach workers to increase HBV education and screening, including outreach to AAPI businesses in Akron and Cleveland, OH.

·       Center for Pan Asian Community Services (Atlanta, GA) – CPACS’ project focuses on expanding their Atlanta-based hepatitis B coalition, increasing the number of Georgia AAPI community members who know their HBV status through community and provider education, and improving testing and linkage to care services throughout the city.

·       Philadelphia Department of Public Health (Philadelphia, PA) -The Perinatal Hepatitis B Prevention Program auxiliary project will create new education modules for prenatal and pediatric care and conduct on-site provider education sessions to improve knowledge and care for infected mothers.

The 2017-18 project period expanded its priorities to address perinatal transmission and education through storytelling efforts with the #JustB Storytelling Campaign in addition to screenings and linkage to care.   The overall success of the Hep B United mini-grants has been proven through the significant number of high-risk populations educated, screened and linked into appropriate care for hepatitis B.   We look forward to updating you further in the coming months as we continue to highlight the national work of the Hepatitis B Foundation and Hep B United partners around the U.S.

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.

Hepatitis B Advocacy, Hepatitis B Treatment

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

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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.

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

How to Find a Liver Specialist Who Really Knows Hepatitis B

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

By Christine Kukka

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

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

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

There are two types of specialists who treat liver diseases:

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

Tips for finding a specialist:

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

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

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

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

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

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

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

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

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

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

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

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

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

Baruch S. Blumberg Institute