Hep B Blog

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

2013-05-17_HepbUnitedEventBy Christine Kukka

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

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

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

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

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

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

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

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

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

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

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

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

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

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.’”


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

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.

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

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

By Christine Kukka

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

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

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

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

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

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

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

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

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

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

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

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

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