By Nadine Shiroma
HBV civil rights advocate & Hepatitis B Foundation policy adviser
Between 1991 and 2012, many medical and dental schools in the United States accepted students with chronic hepatitis B (CHBV) — most of them Asian American and Pacific Islanders (AAPIs) — only to prohibit their enrollment due to the disability. Over the years, few schools disclosed or updated their policies.
Young AAPI adults with CHBV have likewise been barred from U.S. uniformed services and Department of Defense (DOD) scholarship programs, even as the DOD failed to document or update science-based accommodations for personnel diagnosed after accession.
Chronic hepatitis B
CHBV is a silent disease that harms the liver before making its presence known. It can lead to life-threatening liver scarring, liver failure, and liver cancer.
Fortunately, a vaccine — the first anti-cancer vaccine — was developed in 1969, followed by HBV antiviral drugs that reduce infectivity to levels the Centers for Disease Control and Prevention (CDC) considers non-infectious.
Worldwide, 257 million people live with CHBV. In the United States, CHBV disproportionately impacts U.S. immigrant communities from world regions with moderate to high HBV endemicity, where infants born to HBV-infected mothers and not treated at birth, become infected.
The AAPI community comprises less than 5 percent of the U.S. population, but accounts for 50 percent of the estimated 2 million Americans living with chronic HBV. Ignorance, combined with a reluctance to report or speak of the disease or discrimination for personal, professional or cultural reasons and legitimate concerns of immigrant backlash, underscore the need for advocacy, similar to the advocacy sustained since the 1980s for persons with HIV.
Dismantling discriminatory healthcare school policies
In 2011, the Hepatitis B Foundation convinced the CDC of the urgent need to revise outdated guidelines for HBV-infected healthcare workers. Meanwhile, the third party complaint filed with the Department of Justice (DOJ) prompted an investigation and a settlement agreement in 2013, followed by a Technical Assistance Letter informing U.S. healthcare schools that 1) accommodations were required for students with CHBV disability and 2) failure to comply could violate Title VI, which prohibits discrimination based on race, ethnicity, or national origin.
Ongoing CHBV discrimination in the U.S. uniformed services
Since 2013, advocates have assisted enlistees and students ruled ineligible for DOD service and others who were disqualified or discharged from active duty or a DOD military academy due to CHBV. Upon learning that the 2013 DOJ settlement agreement would not impact federal agencies, HBV disability rights advocates worked to bring attention to the injustice resulting from DOD’s outdated CHBV policies, which affect not just the military services but the Public Health Service, Coast Guard, and the National Oceanic Atmospheric Administration.
Bear in mind: 1) There are an estimated 1.2 million HIV cases in the United States and an estimated 2 million CHBV cases. In 1988, the DOD established and has updated written accommodations for personnel diagnosed with HIV, but has yet to establish CHBV-specific accommodations.
2) In 2002, the DOD mandated HBV immunization for personnel without requiring CHBV screening. This allowed enlistees to be inducted, deployed to war theaters, diagnosed with CHBV as part of a routine physical, and years later face medical and/or physical review boards and service discharge, then find themselves scrambling to find jobs and housing.
3) Current CHBV outbreaks in white, non-immigrant, rural and/or economically depressed regions caused by injected opioids reveal that infected young adults were not immunized as children, or were infected before being immunized due to a lack of resources or access to healthcare. Lost opportunities and continuing discrimination caused by the DOD’s outdated CHBV policies are not just an AAPI or immigrant/refugee issue.
We continue to work with the offices of Rep. Adam Smith (member of the House Armed Services Committee) and Sen. Mazie Hirono (member of the Senate Armed Forces Committee). Lending their voices are the Veterans of Foreign Wars organization and the national Japanese American Citizens League.
If you or someone you know experiences CHBV discrimination or are denied DOD employment or educational opportunity, email firstname.lastname@example.org or call the Hepatitis B Foundation in Pennsylvania, (215) 489-4900.