Hep B Blog

Advocates Raise Awareness About African Immigrants’ High Risk of Hepatitis B

Volunteers at Boston's National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day
Volunteers at Boston’s National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day

By Christine Kukka

For years, public health advocates have struggled to educate both doctors and Asian-Americans about the high risk of hepatitis B that this ethnic group faces. It’s been a slow, uphill battle marked by moderate success.

Despite the fact that one in 12 Asian-Americans and Pacific Islanders (AAPI) is chronically infected with hepatitis B, more than two-thirds of them haven’t been screened and don’t know they’re infected.

But another group of immigrants and their children—from Sub-Saharan Africa—are also at high risk of hepatitis B and have received even less attention from public health advocates and the medical community across the U.S.

Of foreign-born U.S. residents with hepatitis B, about 58 percent are AAPIs and 11 percent come from Africa. In the past 20 years, the number of immigrants–primarily from war-torn Somalia, Nigeria, Ethiopia, Ghana, Kenya, and Egypt–have increased more than 750 percent. There are now 1.6 million African immigrants in the U.S. and 10 percent are believed to be infected with chronic hepatitis B.

In the largest study of its kind, 955 African-born residents living in New York City were screened for hepatitis B between 2011 and 2013. Doctors found 74 percent had been infected with hepatitis B in the past, and 9.6 percent had current, chronic or long-term infections.

Ponni V. Perumalswami, MD, director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City
Ponni V. Perumalswami, MD, director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City

“I believe African immigrants have been underserved by our healthcare system,” observed Ponni V. Perumalswami, MD, assistant professor of medicine and director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City and lead researcher of the New York City study. “Similar to Asian-Americans, African immigrants are often not screened or referred to treatment. Additionally, many at-risk African immigrants are not currently engaged in health care and have struggled to access medical care in our communities.”

Healthcare providers have struggled for decades to provide the resources and culturally-competent care needed to screen, immunize and refer infected AAPIs for treatment; now they must develop new strategies to reach African immigrant communities. These communities, found in large cities such as Atlanta and New York and in small towns such as Lewiston, Maine, have a wide array of distinct cultures, healthcare practices and languages.

A young Somali refugee. Courtesy of USAID (USAID) [Public domain], via Wikimedia Commons.
A young Somali refugee. Courtesy of USAID (USAID) [Public domain], via Wikimedia Commons.
Like their AAPI counterparts, many African immigrants lack access to any healthcare, let alone culturally-competent medical care that is trusted and embraced. “There is clearly a healthcare disparity with respect to the large burden of hepatitis B disease in this community, however very little research has been done to identify these gaps and develop successful interventions to bridge them,” Perumalswami explained.

She is now testing a group education program—called the Hepatitis Outreach NEtwork (HONE)–that could be adapted nationwide to raise awareness about hepatitis B. HONE enlists local public health agencies, community organizations, health care providers and community leaders to reach African immigrant communities. She also recommends using patient navigators from each immigrant African ethnic group to help people get screened, immunized and into treatment. “Not every person needs a patient navigator, but they can be very effective in getting some people screened and those infected linked to care,” she said

But for many, this outreach is too little too late. “Unfortunately, it is not uncommon for me to see patients who have been silently infected for decades with advanced liver cancer or suffering from complications of liver failure when we diagnose their hepatitis B infection for the first time,” she said.

That lack of screening and treatment continues to haunt AAPI communities. Vietnamese-American men whose infections were not diagnosed until it was too late make up a large percentage of people with liver cancer in the U.S.

Courtesy of the U.S. Centers for Disease Control and Prevention.
Courtesy of the U.S. Centers for Disease Control and Prevention.

“It’s particularly troubling as we have a highly effective vaccine to

prevent hepatitis B and highly effective treatments to decrease the risk of liver cancer and liver disease progression,” Perumalswami commented.

In an effort to raise awareness about hepatitis B and C and HIV in the African immigrant community, a coalition of organizations, including the Hepatitis B Foundation and Hep B United, and local and national groups are supporting National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day (NAIRHAA Day) on Sept. 9.

A Twitter chat exploring ways to raise awareness among African immigrants in the U.S. is scheduled for 2 p.m. (EST) Tuesday, Sept. 13. Use hashtag  #AIHHchat

For more information about NAIRHAA, including webinar training for healthcare providers and public health officials, please explore the following:

Facebook: https://www.facebook.com/NAIRHHA

Twitter: @NAIRHHADay

Thunderclap: http://thndr.it/1IQC4TB

Webinar training on Improving Hepatitis B Screening and Care Among African Immigrants (June 2016): https://www.youtube.com/watch?v=ixyelHdVPh4

Webinar 1 (Epidemiology)  https://www.youtube.com/watch?v=RWYGgyNSIK8

Webinar 2 (HIV)  https://www.youtube.com/watch?v=T0LOybRvjNw

Webinar 3 (Hepatitis B) https://www.youtube.com/watch?v=g47Dm3rV4-Y

For more information, contact Siede Slopadoe, lead organizer for NAIRHAA Day, at sslopadoe@mac-boston.org

A Hero Takes the Fight Against Hepatitis B to Rural Ghana

A street scene in Ghana. Photo by Ebenezer Akakpo.
A street scene in Ghana. Photo by Ebenezer Akakpo.

By Christine Kukka

The HIV/AIDS epidemic, ebola and malaria have infected and killed millions in Sub-Saharan Africa , but another infection, more silent and insidious, has also destroyed millions of African lives yet has received little attention from the global community—hepatitis B.

A recent article in The Lancet medical journal estimates that between 5 and 20 percent of the 1 billion Africans in this region have been infected with hepatitis B and 5 percent are chronically infected.

The region lacks the healthcare workers and resources to educate, screen and immunize people for hepatitis B, and there are few medical centers or drugs available to treat those infected. In a cruel twist of fate, many people find out about their hepatitis B when they attempt to donate blood.

A road in northern Ghana. Photo by Ebenezer Akakpo.
A road in northern Ghana. Photo by Ebenezer Akakpo.

“It was on one fateful day in 2007, during my second year in college, when I decided to donate blood to help save the lives of pregnant mothers who undergo complications during deliveries,” wrote one young man who now works with the Hepatitis Foundation of Ghana. “Everything was OK, until the lab technician called out my name and told me they cannot let me complete the processes because my blood was ‘incompatible.’ He later handed me a fact sheet on hepatitis and requested that I read it thoroughly,” he recalled. “I felt so confused and didn’t know what to do. I thought I would be referred to see a physician for counseling but no, nothing. Not knowing what to do, I decided to educate myself.”

He went online and read several articles about hepatitis B. He learned the importance of avoiding alcohol and smokin and eating healthy foods. “In 2009, I took another test that revealed I was in the chronic stage of the infection,” he recalled. “Even the health professionals at that facility couldn’t explain what that really meant. I was confused and didn’t know if I was going to die or not.”

A year later, he had another test that showed the infection was not currently causing any liver damage. “I live in a community and country where the level of awareness about hepatitis is very low,” he explained. “The majority of the people are ignorant about the situation. I have lost some family members as a result of the disease.”

His research led him to the foundation in Ghana. “I no longer feel left alone. I now feel I have someone whom I could call upon for any information or seek clarification concerning my situation. Not only me, but for my community too,” he wrote.

The foundation, established by Theobald Owusu-Ansah, is attempting to educate people about hepatitis B to stop an infection that is killing thousands in Ghana. In Africa, hepatitis B is commonly spread during childbirth, through re-used syringes due to scarce medical resources and sexually. A lack of knowledge about hepatitis B and how it is spread, especially among healthcare workers and midwives, has also helped spread the disease.

Owusu-Ansah established the foundation in 2007 after four of his family members died from hepatitis B. He realized he had to take action to educate people about this deadly infection and get better treatment for people living with hepatitis B. Here is his story about a young woman diagnosed while attending nursing school.

Theobald Owusu-Ansah, president of the Hepatitis Foundation of Ghana
Theobald Owusu-Ansah, president of the Hepatitis Foundation of Ghana

“Initially, someone had put her on some herbal preparations and told her they would cure her ailment after she was first diagnosed with hepatitis B,” he recalled. Owusu-Ansah spent hours educating her about hepatitis B and she went for tests, which revealed she had liver damage. She was referred to a physician who prescribed the antiviral tenofovir (Viread) and recommended regular monitoring. After several months of treatment, her liver was healthy and her viral load was undetectable.

Years passed, she married and became pregnant. Osusu-Ansah reminded her that her babies would be protected against hepatitis B if they immediately received the first dose of the hepatitis B vaccine and HBIG within 12 hours of birth.

But things went wrong. She had stopped taking tenofovir. Her midwife gave her an herbal remedy for hepatitis B and told her the vaccine would be enough to protect the baby. It wasn’t, the baby became infected. The mother was devastated.

“Her story is not so different from many others’ experiences in some parts of Ghana,” he explained. “The unavailability of HBIG and the vaccine is challenging, and even when they are available, very few can afford them.”

In Ghana, and many other regions of Africa, the only vaccines available for free are combination (pentavalent) vaccines that contain vaccines for hepatitis B, diphtheria and other diseases. While economical, these combination vaccines cannot be administered until a baby is at least six weeks old, which is too late to prevent mother-to-child infection.

To break the infection cycle, a single dose (monovalent) hepatitis B vaccine must be administered within 12 hours of birth.

“I believe something can be done about this,” said Owusu-Ansah. “With government support, we need to expand our education campaigns to cover rural areas and take the message of hope to their doorsteps.”

For more information about the Hepatitis Foundation of Ghana, visit its website or email theobald2003@yahoo.com.

What Stands Between Your Family and a Deadly Disease? Safe and Effective Immunizations

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

By Christine Kukka

Are you dreading taking your kids for their back-to-school vaccinations or wondering if vaccines do more harm than good? Let me tell you about my neighborhood.

Three years ago, a neighbor’s children came down with whooping cough (pertussis). It turns out, the parents didn’t believe in vaccinating their kids. All three children were infected as was their elderly grandmother and two other children down the street.

This family’s refusal to get vaccinated against this highly-infectious respiratory disease threatened the health of the neighborhood. Two doors away, a family had a new baby and the infant’s brother played with the infected children. Babies can’t be vaccinated against pertussis until they’re six months old.

Half of all babies who contract pertussis are hospitalized because they can’t clear the heavy mucus from their lungs. Of those hospitalized, 23 percent get pneumonia and 1 percent die.  Before the pertussis vaccine became available, about 9,000 children died from the infection every year. Luckily, the baby wasn’t infected in this micro-epidemic.

Here’s another example why vaccines are worth the discomfort of a shot. My daughter, born in China, didn’t have access to immunizations, including the birth dose of the hepatitis B vaccine. As a result, she is chronically infected with hepatitis B. Had she been born in a country that immunizes children, she wouldn’t face the 15 to 25 percent risk of dying from liver disease that she faces today.

Immunizations are safe and effective, and they protect our families and our communities, which is why every child should be immunized before they start school this fall. So why doesn’t everyone protect their children?

Image courtesy of arztsamui at FreeDigitalPhotos.net.
Image courtesy of arztsamui at FreeDigitalPhotos.net.

Scientist and astrophysicist Neal deGrasse Tyson has a theory about why some people don’t believe science—even when it’s confirmed by objective, clinical data. Examples include conservatives who disavow global warming and, Tyson pointed out, college-educated Americans who don’t vaccinate their children.

In the U.S., it is college-educated parents who make up a large percentage of people who opt out of vaccination. Despite clear, scientific evidence, they believe vaccines pose a higher risk to their children than the diseases they prevent. These parents assume that because so many others immunize their children, these diseases have “gone away” and they don’t have to. It’s a dangerous and arrogant assumption.

Reliance on this “herd immunity” approach, which banks on enough people being immunized so the overall disease risk remains low, doesn’t work. Infectious diseases really never go away, and they come back with a vengeance when a growing number of community members stop vaccinating their children.

The pertussis strain that infected the U.S. and my neighborhood two years ago was a particularly bad one. Researchers believe the vaccine wasn’t 100 percent able to prevent that strain. Viruses mutate and things like this happen. But when it does, having a sizeable portion of a community not immunized acts as an accelerant to an epidemic.

There are already children and adults in every community who can’t be vaccinated (even when they want to be) because of health problems, or they have weak immune systems that do not respond well to immunization, such as the elderly. Herd immunity helps these people with weak immune systems, but it loses its effectiveness when a growing number of people opt out of immunizations and endanger public health.

There is real science confirming the safety and value of immunizations:

  • Before the measles vaccine became available, there were 500,000 measles cases every year in the U.S. and 500 deaths. By 2000, the country had eradicated the infection.  However, in 2014 as more parents opted out of immunizations, the country experienced 667 measles cases in 27 states including an outbreak at Disneyland. Most who caught measles were not immunized.
  • Now let’s look at hepatitis B. According to the CDC, new cases of the deadly liver infection hepatitis B have declined 82 percent since 1991, when universal childhood immunizations became available. Before that, an estimated one in 20 Americans got hepatitis B.

Immunizations have been the medical miracle of the last century. Millions of lives have been saved. In observation of National Immunization Awareness Month this August, make sure your school- or college-bound children are up-to-date with their immunizations. And while you’re at it, check your own immunization record. No one is immune.

Aflatoxin Alert: Moldy Nuts and Corn Increases Your Liver Cancer Risk 60-Times If You Have Hepatitis B

Image courtesy of YaiSirichai at FreeDigitalPhotos.net
Image courtesy of YaiSirichai at FreeDigitalPhotos.net

By Christine Kukka

One of the biggest health threats to people living with chronic hepatitis B is a toxic, nearly invisible mold called aflatoxin found in corn, peanuts, peanut butter, almonds, Brazil nuts, walnuts and pistachios.

People with hepatitis B who eat food with high levels of aflatoxins face a liver cancer risk that is 60-times above average.

In addition to nuts and grains like quinoa, aflatoxin can be found in figs, milk and cheese, soybeans, dried spices and cottonseed. It is less common in rice, as long as rice is hulled, which removes aflatoxin mold. Continue reading "Aflatoxin Alert: Moldy Nuts and Corn Increases Your Liver Cancer Risk 60-Times If You Have Hepatitis B"

In America, It Takes a Coalition to Combat Hepatitis B

Hep B United Summit members meet with California lawmakers in Washington DC.
Hep B United Summit members meet with California lawmakers in Washington DC.

By Christine Kukka

In late July, during World Hepatitis Day 2016, the fourth annual Hep B United Summit convened in Washington D.C. and dozens of advocates met with federal officials and brainstormed strategies to increase screening, immunization and linking people to care to eliminate hepatitis B across the country.

The Hepatitis B Foundation and the Association of Asian Pacific Community Health Organization (AAPCHO) established Hep B United in 2011 to address the silent epidemic of hepatitis B. The liver disease infects 2 million people in the U.S., and 67 percent don’t know they’re infected.

Asian-American and Pacific Islanders (AAPI) and African immigrant

Members of the Hep B United 2016 Summit in Washington DC.
Members of the Hep B United 2016 Summit in Washington DC.

communities are among those hardest hit. Crafting a culturally- and liguistically-adept approach on small or non-existent budgets to educate and screen these diverse populations remains a challenge for Hep B United’s  more than 30 community coalitions in 15 states and Washington D.C.

On the upside, the coalition’s organizations have educated 4 million Americans and screened about 40,000. However, large swaths of the country lack outreach efforts to prevent the spread of hepatitis B. For a map and list of Hep B United Summit member organizations, click here.

The coalition’s ongoing hepatitis B prevention efforts mirror HIV and hepatitis C campaigns that have sought to increase education, screening, and linkage to care. But in many respects, Hep B advocates face more challenges:

  • Because there is a safe and effective vaccine that prevents hepatitis B, many state and federal health officials assume the infection will go away on its own and government resources for screening and prevention have been minimal.
  • Many immigrant populations affected by hepatitis B have unique languages and cultures, which requires careful, individual approaches to each community.
  • Federal healthcare programs often under-funded or inhibit effective prevention work. For example, Medicare currently does not cover the cost of life-saving hepatitis B tests in seniors, many of whom are in high-risk groups because of their ethnicity or personal history. The federal government has proposed to cover screening, but only if it’s ordered in a primary care office.  Some of the most effective screening in high-risk communities often occurs at community-based settings or emergency rooms, far from a primary care office. Summit participants are orchestrating letter-writing to endorse the federal government’s proposed decision to cover hepatitis B screening under Medicare and to convince Medicare officials to broaden coverage of hepatitis B screening.

Summit also participants met with federal officials from the U.S.  Department of Health and Human Services, Centers for Disease Prevention and Control (CDC) and the Department of Justice to push for more effective policies and increased funding to fight the world’s most common serious liver infection. One afternoon was spent visiting Congressional representatives to boost lawmakers’ awareness of the terrible toll hepatitis B takes on their constituencies.

“If community organizations can learn from each other and develop effective ways to educate people about hepatitis B and to get them screened and referred to medical care in the early stages of their infection, we can succeed in preventing new cases, save health care dollars and, most importantly, save lives,” said Jeffrey Caballero, AAPCHO executive director and Hep B United co-chair.

The following four hepatitis B advocates were honored at the summit for their work to eradicate hepatitis B:

Alex Shirreffs, Philadelphia's Viral Hepatitis Prevention Coordinator
Alex Shirreffs, Philadelphia’s Viral Hepatitis Prevention Coordinator

Alex Shirreffs, MPH, Viral Hepatitis Prevention Coordinator with the Philadelphia Department of Health. She was recognized for her collaboration with Hep B United Philadelphia to screen area AAPI communities. Her work ensures that hepatitis B remains a public health priority, and she serves as a critical liaison between Hep B United and other Adult Viral Hepatitis Prevention Coordinators nationwide.

Mohammed Abdul-Kadir, coordinator of Hepatitis B Coalition of Washington
Mohammed Abdul-Kadir, coordinator of Hepatitis B Coalition of Washington

Mohammed Abdul-Kadir, MPH, MSIS, coordinator of the Hepatitis B Coalition of Washington, (now part of International Community Health Services in Seattle), is recognized for his commitment to eradicating hepatitis B in Washington’s AAPI communities by bringing together stakeholders from across the state and providing free screening, education and linkage to care for thousands of individuals.

Hepatitis B civil rights advocate Nadine Shiroma
Hepatitis B civil rights advocate Nadine Shiroma

Nadine Shiroma, a national hepatitis B civil rights advocate from Seattle, has worked tirelessly with the Hepatitis B Foundation to eliminate hepatitis B-related discrimination in the United States. She is recognized for advocacy on behalf of hepatitis B-infected health care students, which resulted in hepatitis B being added as a protected condition under the Americans with Disabilities Act (ADA). The fight now has been taken to the U.S. Department of Defense, which currently bars infected applicants and discharges military personnel diagnosed with hepatitis B.

Moon Chen, director of the Asian American Network for Cancer Awareness, Research and Training.
Moon Chen, director of the Asian American Network for Cancer Awareness, Research and Training.

Moon Chen, Ph.D., director of the Asian American Network for Cancer Awareness, Research and Training in Sacramento, Calif., is recognized for making hepatitis B a priority for academic and public health research, and for continuing to research and identify effective hepatitis B prevention, screening and referral-to-care intervention models that can be replicated nationwide.

For more information about joining Hep B United, click here.