Hep B Blog
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?

1 Comment

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

4 Comments
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.

Hepatitis B Advocacy, Hepatitis B Treatment

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

4 Comments
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 Advocacy

Like Hepatitis B, Addiction Is a Chronic Disease That Needs Treatment Without Judgement

addictionBy Christine Kukka

Addiction is a chronic disease, like hepatitis B, type II diabetes, cancer and heart disease. These diseases all run in families, are influenced by environment and behavior, and are notoriously difficult to treat.

No one chooses to develop diabetes or heart disease. Nor do they choose to be a drug addict or alcoholic, or infected with hepatitis B. Yet, how we view and treat people with these chronic diseases varies drastically.

As a society, we view heart disease as a tragic occurrence. It kills roughly the same number of people as cancer, lower respiratory diseases and accidents combined and costs us more than $316.6 billion in health care and lost productivity.

But most heart disease is preventable and results from an inability to make wise choices about food and exercise. Yet, when we hear about a heart attack, we don’t shake our heads and say, “If only they had exercised more,” or, “too bad they didn’t have enough self-control to lay off the junk food.”

alcoholicBut we do say that about smoking, drug addiction and alcoholism, and about some of the chronic infectious diseases that result, such as hepatitis B or C or HIV.

How often do we who have hepatitis B quickly tell our friends that we were infected at birth, to make sure they know it wasn’t from drugs or promiscuity? Even we who live with hepatitis B can get caught up in the notion that some hepatitis B cases carry shame and others do not.

If we can get past our moral judgements about addiction and view it instead as the chronic disease it is, maybe we can also stop moralizing and judging people with STIs or viral hepatitis or HIV. Maybe we can finally get better at talking about it, preventing it and treating it.

There is overlap between “respectable” chronic diseases like cancer and heart disease and stigmatized diseases like addiction to tobacco, alcohol or street drugs. According to the National Institute on Drug Abuse:

  • Tobacco contributes to 11 to 30 percent of cancer deaths and 30 percent of heart disease deaths each year.
  • Tobacco, cocaine, amphetamines, alcohol and steroids all contribute to heart disease.
  • Injecting drug use contributes to one-third of HIV/AIDS cases and most hepatitis C cases, and is now responsible for an increase in new hepatitis B infections in many rural states, despite the availability of a safe and effective vaccine.

We need to re-orient our views of addiction if we are ever to treat it scientifically. Everyone with a chronic disease deserves treatment, quality care and respect.

Between 200,000 and 300,000 people are infected with hepatitis B in the U.S. each year, 20 percent are injecting drug users.  More than 80 percent of drug users who have been injecting for a decade or longer have been infected with hepatitis B.

We need effective treatment for all addictions, no matter if the drug of choice is tobacco, alcohol, heroin, fast food, sweets, or an opioid prescribed by a doctor.

April is Alcohol Awareness Month, let’s take a moment to recognize our own prejudices and discard them for the sake of all touched by the chronic disease of addiction.

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

How to Find a Liver Specialist Who Really Knows Hepatitis B

8 Comments
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.

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Iron Overload Affects More Than the Irish, People with Hepatitis B-Related Liver Damage Need to Be Tested

Image courtesy of zole4 at FreeDigitalPhotos.net.
Image courtesy of zole4 at FreeDigitalPhotos.net.

By Christine Kukka

Iron is crucial to our health, but too much iron – called iron overload – can put us at risk of liver damage and other health problems, especially if we have hepatitis B-related liver disease and/or we’re Irish.

Irish and hepatitis B are not normally two words you hear in the same sentence, but both populations may need to be careful about how much iron they eat.

  • A liver inflamed or damaged by a chronic hepatitis B infection or other causes doesn’t process or store liver effectively and the excess iron accelerates liver damage and causes a host of other medical problems.
  • If you’re Irish or of northern European ancestry, one in eight of you have a genetic predisposition for hereditary hemochromatosis (HH) – commonly called the Celtic Curse — that occurs when the body doesn’t process or store iron properly, leading to a four-fold increase in iron absorption.
  • If you’re Irish and have chronic hepatitis B, you may want to celebrate St. Patrick’s Day with a trip to your doctor for a simple blood test for ferritin (iron) and transferrin saturation. If they’re elevated, your doctor may order a gene test to see if you have HH.

The relationship between iron overload and hepatitis B has been problematic, or as researchers like to say, “not well defined.”

Our liver is the body’s major storage organ for iron. About one-third of the iron we consume is stored in liver cells, which play a major role in recycling iron and synthesizing transferrin (the main transporting protein) and ferritin (the major storage protein) from iron.

Image courtesy of Stuart Miles at FreeDigitalPhotos.net.
Image courtesy of Stuart Miles at FreeDigitalPhotos.net.

When our livers are damaged or inflamed from hepatitis B, the Celtic Curse, fatty liver or alcohol, they don’t synthesize iron well, leading to excessive iron deposits in the liver which leads to more liver damage, including inflammation, fibrosis and even liver cancer.  In some hepatitis C patients, iron overload was found to reduce the effectiveness of antiviral treatment in some patients.

Researchers often found elevated iron levels in hepatitis B patients and suspected chronic hepatitis B could lead to iron overload. Recently, new research has discovered it’s the inflammation or liver damage from hepatitis B that causes iron problems. People with “inactive” hepatitis B with no signs of liver damage usually do not experience iron overload.

“Our data clearly indicate that hepatitis B-related liver injury, but not direct chronic hepatitis B infection, is likely responsible for the changes in the serum iron markers,” researchers concluded in a report on this topic published in the European Journal of Gastroenterology & Hepatology.

Hepatitis B Foundation Medical Director Robert Gish believes that iron overload is a “non-issue” for hepatitis B patients. However, he does have his patients get a transferrin saturation test. (A score of 20 percent indicates iron deficiency while a score exceeding 50 percent suggests iron overload.)

Many foods in our diet are rich in iron, including iron-fortified cereals, breads and pastas and meat including beef, pork, poultry and seafood.

According to experts, unless we have severe liver damage (often indicated by elevated liver enzymes (ALT/SGPT) or an ultrasound), we don’t need to restrict our consumption of foods rich in iron.

But if we do have liver damage and/or are Irish, it might be worth a conversation with our doctor. When we have excess iron, it is usually not detected by a complete blood count (CBC), hemoglobin, or hematocrit, test, it requires the transferrin saturation test.

Symptoms to watch for include fatigue, joint pain, abdominal pain, irregular heartbeat, skin color changes, irregular menstrual cycles, loss of libido and impotence, bone density changes, depression, anxiety, muscle pain, brain fog, chronic diarrhea, diabetes, liver damage and headaches.

For more information on HH, visit the website of the American Hemochromatosis Society.

Living with Hepatitis B

Struggling with Depression and Hepatitis B? You’re Not Alone

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

By Christine Kukka

Studies show people with chronic hepatitis B have higher rates of depression and anxiety than the general population, which should surprise no one.

There’s no cure, people with hepatitis B face stigma and discrimination, and when we disclose, we risk rejection or friends think we’ve done drugs or slept around. And, if we are people of color, we’re already viewed as outsiders or different already; a medical diagnosis just adds to our feeling of alienation.

Sometimes, we need help. We need to be reminded once again that hepatitis B is nothing to be ashamed of, that millions of people around the world are infected not because they did anything wrong, but because it’s not a perfect world and not everyone had access to the hepatitis B vaccine at birth or sterile medical equipment or is able to practice safe sex 100 percent of the time.

Some symptoms of depression include feeling sad, down, or just emotionally flat or apathetic. We may feel tired, irritable, or experience mood swings and find we are unable to concentrate. If we’re taking antivirals, we may frequently forget to take our meds. We might also lose our appetite, sleep too much or too little, and fantasize about harming ourselves or even suicide.

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

It’s time to get some help. Medical guidelines usually recommend a combination of “talk” therapy and antidepressant medication. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your infection. It can be liberating to have another person challenge your cataclysmic view of life, especially if you’re you’ll never find love or happiness.

It’s also good to join a support group or an email list to confirm that you’re not the only one in the world with hepatitis B.

The other treatment for depression are antidepressant pills, taken daily. Antidepressants take a while to build up in your system so you usually have to take them for a few weeks before you feel better.

Are antidepressants safe if you have hepatitis B?

Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. Unless you already have severe liver damage, experts see no threat from antidepressants, but if there is concern, your doctor should monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

“I would say antidepressant shouldn’t be used if there’s been liver failure,” said Hepatitis B Foundation Medical Director Robert Gish. “If there’s just cirrhosis and you have normal liver function (normal ALT/SGPT) antidepressant still should be fine. The only one not to use is Cymbalta (duloxetine). “

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.

Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

In addition to seeking treatment and therapy, below are some other ways to relieve stress and improve your sense of well-being.

  • Join a support group.
  • Ask friends of family for help.
  • Don’t isolate yourself.
  • Replace negative thoughts with positive ones, even if you don’t believe it at the beginning. Talk it until you can walk it.
  • Join a yoga, meditation or stress management class.
  • Get out in the sunlight and exercise more, even if it’s taking a short walk. Find something you find joy in.
  • Eat healthy foods, exercise regularly.
  • Get at least eight hours of sleep each night, and talk to your healthcare provider if you have problems sleeping.
  • Avoid alcohol (which is a depressant) and other self-medication.

 

Hepatitis B Advocacy, Living with Hepatitis B

March 1 is Zero Discrimination Day: Ending Hepatitis B Stigma Starts with Us

2 Comments

 

2017-zero-discrimination-day_en.pdfBy Christine Kukka

Around the world, millions of people with chronic hepatitis B face wrenching discrimination that limits their dreams, education, careers, income and personal relationships. Here are examples:

  • A Vietnamese woman working in a hotel in Dubai is found to have hepatitis B and is fired, isolated, deported and given a life-time ban on re-entering the country.
  • A young person from the Philippines, aspiring to increase her income to support her impoverished family, is hired to work in Saipan, but her work visa is suddenly cancelled by the employment agency when it discovers she has hepatitis B.
  • A young man from the state of Washington, who worked hard in high school to get into the Naval Academy, is summarily dismissed within days of his arrival when it’s discovered he has hepatitis B. The U.S. military continues to bar people with hepatitis B from serving.

All of this discrimination is unethical, unnecessary and a violation of human rights. Hepatitis B is simply not transmitted through casual contact. The stigma that persists is based on ignorance and it impacts millions around the world daily. This is why we need to recognize Zero Discrimination Day on Wednesday, March 1.

Image courtesy of cooldesign at FreeDigitalPhotos.net.
Image courtesy of cooldesign at FreeDigitalPhotos.net.

This day, designated by the United Nations, highlights the negative impact of discrimination and promotes tolerance, compassion and peace. Many hepatitis activist organizations, including the Hepatitis B Foundation, is using this celebration to draw attention to global hepatitis B discrimination.

In the U.S., some progress has been made to eradicate the unequal treatment of people affected by chronic hepatitis B infection. In 2012, prompted in part by complaints filed by the foundation, CDC issued new regulations that clarified that hepatitis B should not, “disqualify infected persons from the practice or study of surgery, dentistry, medicine, or allied health fields.” These recommendations and a U.S. Department of Justice letter warned medical, nursing, dental schools that they could not exclude applicants and students with hepatitis B, concluding, “… for most chronically HBV-infected providers and students who conform to current standards for infection control, HBV infection status alone does not require any curtailing of their practices or supervised learning experiences.”

However, today people with hepatitis B can’t even get jobs as hotel maids in many countries in the Middle East and Asia. Fear and ignorance, and reluctance by government officials to outlaw these discriminatory practices, have allowed these rules that diminish basic human rights to continue. The young woman who was exiled from Dubai, wrote of her experience:

“When I was 21, I had my internship in Dubai and needed to undergo a blood test. I was not aware of the rules in that country so when I was tested positive, the hotel that I worked for isolated me. I was going through a very hard time because I was completely alone in a foreign country. My work visa was canceled, they brought me to a place that looked like a jail, they took my iris scan, and I was deported along with a lifetime ban, which means I can never come back to that country again. That was the most horrible memory in my life. I am still scared every time I think about it. Sometimes I cannot sleep at night, I keep blaming, cursing myself for having this kind of virus inside my body.”

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

No one is to blame for hepatitis B, including the millions who were infected at birth or from unsafe and contaminated syringes and medical devices. There is a safe and effective vaccine that prevents hepatitis B today. When people are protected, there is no reason to fear that healthcare workers or hotel maids will spread this infection.

It is morally reprehensible that given the tools and knowledge we have that this discrimination should continue today.

Every day is zero discrimination day, and ending discrimination starts with us working individually in any way we can in our communities to end this stigma.

Make the NOhep:NOexcuse pledge and take simple actions to help eliminate viral hepatitis. It only takes a minute to pledge your support! 

The United Nations first celebrated Zero Discrimination Day on March 1, 2014, after UNAIDS, a UN program on human immunodeficiency virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), launched its Zero Discrimination Campaign on World AIDS Day.

Baruch S. Blumberg Institute