Around the world, millions of people with chronic hepatitis B face wrenching discrimination that limits their dreams, education, careers, income and personal relationships.
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. The United Nations created Zero Discrimination Day to highlight the negative impact of discrimination and promote tolerance, compassion and peace. Many hepatitis activist organizations, including the Hepatitis B Foundation, used this commemorative day to draw attention to global hepatitis B discrimination. Even though Zero Discrimination Day was on March 1, we still need to recognize the importance of stopping hepatitis B discrimination.
Every day is zero discrimination day, and ending discrimination starts with each of us working in any way we can in our communities to end this stigma.
No one is to blame for hepatitis B, and people who have hepatitis B deserve the same opportunities to live fulfilling lives – at work, at home and in the community. . There is a safe and effective vaccine that prevents hepatitis B infection. When people are protected, there is no reason to fear that healthcare workers or hotel maids will spread this infection. Even without vaccination hepatitis B transmission can be avoided with simple prevention measures. Hepatitis B is not transmitted casually.
People who have hepatitis B are part of our global community. They are our mothers, brothers, doctors, teachers, spouses and friends. To learn about how the fear of discrimination affects people who have hepatitis B, check out some of our #justB patient stories. Jin’s story tells us how a vibrant young woman handles her fear, and Carolyn’s story shows us the devastating consequences of hiding a hepatitis B diagnosis.
It is morally reprehensible that given the tools and knowledge we have that discrimination against people who have hepatitis B should continue today. So we ask you to help us end this discrimination.
One way you can fight hepatitis B discrimination is by joining the World Health Alliance in their #StigmaStops awareness campaign. It is a year-long campaign that highlights the stigma and discrimination associated with hepatitis around the world. #StigmaStops provides people living with hepatitis a platform to strengthen their voice and speak about the stigma and its impact as well as dispel myths and misconceptions of hepatitis B. Another way to help is to talk about hepatitis B – with your colleagues, friends and family members. The more we talk openly about hepatitis B, the less it will be stigmatized. And feel free to share our #justB videos – they can be a great conversation starter!
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 firstname.lastname@example.org.
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.’”
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.
This 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.
Heartfelt discussion with the “Hepatitis B Positive Speakers Group”, led by Australia’s Geraldine Doogue, ABC TV and Radio. Join Yvonne, David, Trevor, Linh and “Tina”, as they discuss their personal hepatitis B experiences -living with the stigma, and discrimination you can both see and “not quite put your finger on”, and their willingness to give back, and to increase community awareness.