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Category Archives: Hepatitis B Advocacy

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time

September 14, 2016 hepbtalk 77 Comments

Maureen Kamischke, Hepatitis B Foundation's social media and outreach manager. — Maureen Kamischke, Hepatitis B Foundation’s social media and outreach manager.

Hepatitis B is a complex infection, it can impact our health, lifestyle choices and threaten relationships. Sometimes, we need to ask for help.

One of the most personal and valuable services the Hepatitis B Foundation provides is answering individuals’ emails and phone calls about hepatitis B. These queries, which can come from all over the world, often involve discrimination, disclosure and how to interpret lab tests that baffle inexperienced doctors and nurses.

One of the people at the foundation who answers these emails and calls is Maureen Kamischke, the foundation’s social media and outreach manager. Kamischke, whose daughter had hepatitis B, knows first-hand the difficulty of finding healthcare providers with expertise in hepatitis B treatment. She has grappled with decisions about disclosing her child’s infection at school and to friends. Today, she continues to advise her daughter (now an adult) about her liver health, and she also answers the dozens of emails and calls that reach the foundation each week.

Maureen Kamischke's daughter Maren. — Maureen Kamischke’s daughter Maren.

Today, guided by decades of personal and professional hepatitis B experience, Kamischke helps others navigate the challenging world of hepatitis B. “My goals are to disseminate accurate information, provide hope and information that will empower people living with hepatitis B to make simple lifestyle changes that will help them feel like they have some control over their lives,” she explained. “I understand that the disease will shape them, but I want them to understand it should not define or limit them. “ Continue reading "Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time" →

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

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

August 31, 2016 hepbtalk

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.

“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.

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.

“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

Hepatitis B Advocacy, Hepatitis B Prevention

A Hero Takes the Fight Against Hepatitis B to Rural Ghana

August 24, 2016 hepbtalk

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.

“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

“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.

Hepatitis B Advocacy

In America, It Takes a Coalition to Combat Hepatitis B

August 2, 2016 hepbtalk

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.

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, 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

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, 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.

Hepatitis B Advocacy, Living with Hepatitis B

World Hepatitis Day: Because 4,000 Deaths a Day Is 4,000 Too Many

July 26, 2016 hepbtalk

By Christine Kukka

The World Health Organization has designated July 28 as World Hepatitis Day, a day to work for global change to eliminate viral hepatitis and the suffering, death and discrimination that accompanies hepatitis B and C by 2030.

From Asia to North America, on this day people around the world raise awareness about viral hepatitis and advocate for better access to treatment and prevention programs and more effective government action. Why? Because 4,000 deaths a day from viral hepatitis is 4,000 deaths too many.

This action is critical, because for too long global leaders have made hepatitis a low priority. Viral hepatitis is a silent disease that causes no symptoms until it’s too late, and many believed the hepatitis B vaccine would simply make the infection go away.

Instead, global health organizations focused on other diseases such as HIV/AIDS, tuberculosis and malaria. HIV especially benefited from unprecedented efforts and donated resources to enable diagnosis and prevention of transmission and to provide treatment at low cost.

Today, we need the same effort and resources to eradicate viral hepatitis, which kill an estimated 1.4 million each year – more people die from hepatitis annually than from HIV/AIDS and tuberculosis combined.
no-hep-for-all-2-212x300 For example, between 5 to 20 percent of the 1 billion people living in Sub-Saharan Africa have chronic hepatitis B Despite this prevalence, there are no widespread screening, education or prevention programs in Africa. The majority of people lucky enough to get screened and diagnosed for hepatitis B are often blood donors, because there are no public health clinics that provide screening for viral hepatitis.

In Asia and Africa, even when pregnant women are diagnosed with hepatitis B, their newborns are often not given that critical, first vaccine dose within 12 hours of birth that would break the mother-to-child hepatitis B infection cycle. The birth dose of the hepatitis B vaccine is either too costly or simply unavailable. Perinatal infection, though preventable, continues to be a major source of chronic infection worldwide. Continue reading "World Hepatitis Day: Because 4,000 Deaths a Day Is 4,000 Too Many" →

Hepatitis B Advocacy, Living with Hepatitis B

Join the Conversation at the Hep B United Summit; Watch the Summit On Periscope!

July 20, 2016 hepbtalk

The annual Hep B United Summit, organized by the Hepatitis B Foundation, convenes in Washington D.C. from Wednesday, July 27 through Friday, July 29. National and local coalition partners, experts, stakeholders, and federal partners will meet to discuss how to increase hepatitis B testing and vaccination and improve access to care and treatment for individuals living with hepatitis B.

You can watch many of these important sessions LIVE on Periscope. You can also follow the conversation at the Summit on Twitter with #Hepbunite!

What is Periscope? Periscope broadcasts live video worldwide, in real time, so you can watch it from your computer (via web link) or a mobile device (via Periscope app). The app is free and available for your phone (iPhone and Android) and iPad or Tablet.

Wondering how to use Periscope to watch the Hep B United Summit in real time? There are two options:

If you’re using a PC, keep an eye out for a tweet from Hep B United and/or the Hepatitis B Foundation Twitter handles (@hepbunited or @hepbfoundation) that will contain a link to take you directly to the stream.
If you’re on the go, you can download the Periscope app for free from the App store or Google Play. You can either login using Twitter or directly with your phone number. Create your Periscope username and then follow hepbunited and hepbfoundation. We’ll be sure to follow you back! Here’s a great Periscope tutorial from Traffic Generation Café to get you started. You can also click on the link from your twitter app.

Here are the details on the sessions that will be broadcast on Periscope:

State of Hepatitis B
1:45-2:15 p.m. Wednesday: Brian McMahon, MD, will provide an update on the state of hepatitis B globally, via a GoToMeeting connection.

Click and watch later here.

Hep B United and Know Hepatitis B Campaign Accomplishments
2:15-3 p.m. Wednesday: Cynthia Jorgensen, DrPH, of the CDC’s Division of Viral Hepatitis will provide an update on Hep B United and the Know Hepatitis B campaign accomplishments of the past year.

Click and watch here.

HHS Town Hall on Hepatitis B
9:30 a.m. Thursday: There will be a town hall conference with U.S. Department of Health and Human Services (HHS), live from HHS.

Click and watch here.

Breakout Session 1:

Developing New Hepatitis B Partnerships and Increasing Awareness
10:45-12:00 p.m. Friday: Contribute and learn about expanding outreach to new sectors (businesses, other at-risk communities, providers, etc.) and hepatitis B education strategies including social and ethnic media engagement. (Facilitators: Thaddeus Pham and Arcadi Kolchak)

Click and watch here.

Leveraging Data and Evaluating Impact
10:45-12:00 p.m. Friday: Discuss and collaborate on hepatitis B data collection and publication strategies, working with IRBs, and leveraging data to evaluate and promote coalition/organization impact. (Facilitators: Moon Chen and Chari Cohen)

Click and watch here.

Breakout Session 2:

Building and Sustaining Local Hepatitis B Coalitions
1:15-2:30 p.m. Friday: Develop strategies to sustain local hepatitis B coalitions and learn about engaging staff and local leadership. (Faciliators: Alex Shirreffs and Mohammad Abdul-Kadir)

Click and watch here.

Navigating Patients and Linkage to Care Strategies
1:15-2:30 p.m. Friday: Contribute to and learn about patient navigation strategies, including overcoming language barriers and working with community health workers and physician champions. (Facilitators: Nirah Johnson and Jane Pan)

Click and watch here.

Not able to join the sessions with Periscope? Follow the conversation on Twitter using the #Hepbunite hashtag. Follow the events, RT and engage with event attendees and help us raise hepatitis B awareness in the U.S. and around the globe.

World Hepatitis Day is July 28th, and this Summit is a terrific opportunity to share with the world what we’re doing to help those living with hepatitis B in our communities.

Other popular hashtags for World Hepatitis Day, and to raise HBV awareness, include: #NOhep, #KnowHepB, #WorldHepDay, #WHD2016, #hepatitis, #hepatitisB, #HBV, and #hepB

Connect with, follow and engage with some of fellow partners on twitter to keep the HBV conversation going during the HBU Summit and World Hepatitis Day events, and beyond. Check out: @AAPCHOtweets, @AAHC_HOPEclinic, @AAHI_Info, @AAPInews, @apcaaz, @APIAHF, @ASIAOHIO, @CBWCHC, @CCACCInc, @cdchep, @cpacs, @HBIDC, @HepBFoundation, @HepBpolicy, @HepBProject, @HepBUnitedPhila, @HepFreeHawaii, @HHS_ViralHep, @ImmunizeAction, @LaoCenterMN, @MinorityHealth, @njhepb, @nemssf, @NVHR1, @nycHepB, @NYU_CSAAH, @sfhepbfree, @supportichs, @WhiteHouseAAPI,

Missing from the list? Contact the foundation at info@hepb.org to be added.

Don’t forget to join the World Hepatitis Alliance Thunderclap and register your World Hepatitis Day events.

Still have questions? Email us at info@hepb.org and we’ll help you get started!

Visit the Hep B United and Hepatitis B Foundation websites for more information about hepatitis B and related programs.

Hepatitis B Advocacy, Living with Hepatitis B

Celebrate Democracy and Inclusion on July 4, Because Building Walls Never Stops Disease

June 29, 2016 hepbtalk

statue-of-liberty-2-300x200 — Image courtesy of porbital, at FreeDigitalPhotos.net.

By Christine Kukka

As the United States celebrates its inclusive, democratic heritage this July 4, the world appears to be pulling apart, disregarding the health and welfare of tens of thousands of refugees.

Civil unrest, extremism and poverty are causing thousands to flee the Middle East, Africa and other regions daily. Faced with this humanitarian crisis, some countries and politicians are advocating building walls instead of bridges.

Britain has just voted to leave the European Union. Proponents of “Brexit” used fear-mongering and blaming outsiders and newcomers for slow economic growth to lure voters to sever their close ties with Europe.

Building walls and ignoring the plight of refugees has terrible human and political consequences. For example, civil unrest helps speed the spread of diseases like hepatitis B around the world. According to estimates, every year up to 16 million hepatitis B infections (along with 160,000 HIV and 4.7 million hepatitis C infections) result from unsafe injections, many of which are administered in refugee settlements and war zones. In addition to unsafe injections, children don’t get vaccinated against hepatitis B, contributing to the spread of liver disease.

“Developing world conflict and mal-distribution of resources remain major contributors to the prevalence of blood-borne viral infection and affect the poor, the young, and the victims of rape in war,” Australian researchers wrote in an article on the impact of war and civil unrest on public health in the journal of Emerging Infectious Diseases.

According to the United Nations High Commission on Refugees, an unprecedented 65.3 million people around the world have been forced from their homes, with 34,000 displaced daily. Among them are nearly 21.3 million refugees — half of whom are children. About 54 percent of today’s refugees come from Syria, Somalia and Afghanistan. All risk infection as they are trafficked or smuggled or transition through refugee camps. We at the foundation have received several emails from desperate refugees diagnosed with hepatitis B in refugee camps with no access to medical care.

When my grandparents came to the U.S. in the early 1900s, it was during a period when there were no walls or fear. Like today’s refugees, they left poverty behind and traveled to a land that promised equal opportunity for all. America was a shining beacon of acceptance and inclusiveness.

As a country, we lose our integrity and our right to say we are among the best in the world if we build walls and forget that we are a country of immigrants. Do you want to promote democracy around the world? Listen to the suffering of others, recognize it, and do your best to bolster the health and welfare of all people of the world. Blind nationalism only make us more isolated. No one wins and many more will die from infections that we can easily prevent.

Hepatitis B Advocacy, Hepatitis B Prevention

In Rural Villages Across India, an Everyday Hero Works to Eradicate Hepatitis B

June 22, 2016 hepbtalk 2 Comments

Villagers-attend-an-education-class-to-learn-how-to-prevent-hepatitis-B.-300x169 — Villagers in India attend an education class to learn how to prevent hepatitis B.

By Christine Kukka

India has one of the highest hepatitis B infection rates in the world. An estimated 40 percent of all hepatitis B deaths worldwide occur in India each year, and about 3 percent of its 1.25 billion residents – about 40 million — are chronically infected.

This liver disease wrecks medical and emotional havoc in India. People diagnosed with hepatitis B struggle to attend schools, advance professionally, and even marry due to the ignorance and stigma surrounding this infection.

Like many countries, India’s government is struggling to find resources to screen, immunize, and treat the millions of people affected by hepatitis B. But some people, including Surender Kumar and Sandeep Godara of New Delhi, are not waiting for the government to eradicate hepatitis B.

The two men have created a nonprofit organization called Rann Bhoomi Foundation and enlisted support from various organizations and pharmaceutical companies to raise awareness about hepatitis B in some of the poorest slums and rural regions of India. Increasingly, advocates like Kumar and their grassroots army of volunteers and staff are needed to combat hepatitis B globally.Government initiatives to screen people for hepatitis B, immunize those at risk, and infected people into treatment have been woefully under-funded. Public health campaigns need resources, vaccines, and the ability to screen people—especially pregnant women to make sure their newborns are immediately immunized at birth–to prevent a new generation of hepatitis B infections.

These campaigns need medical supplies and staff, but they also require knowledge about hepatitis B, compassion and an understanding of local customs to be effective. “I found out in 2010 that I was infected,” Kumar, a 34-year-old human resources executive, explained.

His brother had tried to donate blood at work and was told he was infected. He told his family about the results and encouraged them to be tested. Kumar and his mother discovered they too were infected. “On that same day, I decided to raise awareness about this silent killer in rural as well as urban areas,” he said.

“There is little awareness among people about this disease in rural areas of India as individuals often do not feel sick for many years,” Kumar explained. “I knew we needed a mass awareness program to teach people how to prevent this.”

Surender-presentation-300x200 — Surender Kumar of the Rann India Foundation teaches villagers about hepatitis B prevention in India.

Their campaign provides education, screening and immunization to people during village meetings, special events and cultural programs in 120 villages. “This helps us create a database of all the people in the area, we divide the screened people into two groups, one group that tests positive for hepatitis B and other with a negative result,” he said.

They sponsor immunization campaigns in collaboration with government programs and use donations from pharmaceutical companies for all who test negative for the hepatitis B surface antigen (HBsAg), which indicates they are not currently infected. They refer infected people to the local government hospital for treatment and monitoring. As part of the campaign, the initiative trains local peer educators who continue to raise awareness about hepatitis B after Kumar’s initial education campaign.

The need for this work is critical in India, and at first glance this appears to be an impossible task given the lack of awareness about how hepatitis B is spread and prevented and the enormity of the need. Despite the insurmountable odds, Kumar is intent on working to “defeat” hepatitis B in his country.

Instead of waiting for change, Kumar and Godara are hepatitis B heroes working to save lives and raise awareness. You can contact him by email at:surendersharma19817@gmail.com

For another look at how people in India are fighting stigma and discrimination against people with hepatitis B, view Bollywood star Amitabh Bachchan’s video here.

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?

June 8, 2016 hepbtalk 6 Comments

Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.

By Christine Kukka

Hepatitis B is the global pandemic no one talks about, yet one in three people worldwide has been infected. In 2013, hepatitis B and C together was the seventh-leading cause of death worldwide, with hepatitis B causing 780,000 deaths annually.

Today, 257 million people have chronic hepatitis B. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.

How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. Continue reading "One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?" →

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B

May 11, 2016 hepbtalk 4 Comments

Image courtesy of hin255 at FreeDigitalPhotos.net

May is Asian-Pacific American Heritage Month – a celebration of Asians and Pacific Islanders in the United States. The month of May was selected in 1978 to mark the first major Japanese immigration to the United States (May 7, 1843), and the completion of the transcontinental railroad (May 10, 1869), built primarily by Chinese immigrants.

Like all immigrants, Asians and Pacific Islanders brought with them unique cultures, languages, and lingering health problems from their homeland, including hepatitis B.

This blood-borne infection, unknowingly passed from mother-to-child, is an infection without a cure that would impact Asian immigrants and their children for decades until a vaccine was developed.

Today, administration of the first dose of the hepatitis B vaccine along with a dose of HBIG within 12 hours of birth severs this viral legacy and protects newborns from inheriting this infection. But that is not the end of the story. There are still many Asian-Americans who remain infected, and many Asian immigrants arriving today live with hepatitis B.

An estimated one in 12 Asian-Americans currently has hepatitis B, and two in three don’t know they are infected. Their infection rate is more than 20 times higher than that of the total U.S. population. Hepatitis B is the greatest health disparity between Asian-Americans and the general U.S. population. Approximately 1 million Asian-Americans are living with chronic hepatitis B infection – that’s about half of all cases in the United States. Continue reading "Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B" →

Baruch S. Blumberg Institute