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Hepatitis B Treatment, Liver Cancer, Living with Hepatitis B

Do You Forget Your Daily Hepatitis B Antiviral? Why We “Forget” Our Meds, and How to Improve Compliance

September 6, 2016 hepbtalk 2 Comments

Image courtesy of foto76 at FreeDigitalPhotos.net

By Christine Kukka

Your daily antiviral pill can save your life when you have liver damage from chronic hepatitis B. Entecavir or tenofovir (Viread) quickly reduce the amount of virus in your liver and the damage it causes.

All you have to do is take it. Every day. But 20 to 30 percent of prescriptions are never filled, and about 50 to 70 percent of us don’t take our medications as prescribed. When we stop taking our daily antiviral, hepatitis B can reactivate and threaten our health.

In one study, researchers provided 100 hepatitis B patients with an entecavir pill dispenser that monitored whether or not they took their daily pill over a 16-week period. They found about 70 percent of patients took their antiviral pill as prescribed more than 80 percent of the time — which means these patients were “medication compliant.”

Those who missed taking their antivirals more than 20 percent of the time–and were “noncompliant”–tended to be younger and had indifferent attitudes about whether or not the antiviral was really needed or would work.

Image courtesy of Carlos Porto at FreeDigitalPhotos.net

According to experts, whether we are “medication compliant” or not depends on how much trust we have in our doctors. If we like our healthcare provider and feel comfortable asking questions, we’re much more likely to take our medication on time. And, if our friends and family support and encourage us, we’re even more inclined to take our medication as prescribed.

“The trust I have in my doctor is a big factor,” said a member of the Hepatitis B Support List. “It is important to find a doctor who understands hepatitis B and is willing to work with me in terms of explaining what the options are and what the best approach is in managing my condition.”

“I know antivirals won’t cure me,” another email list member wrote, “but I’m committed to staying healthy and productive as long as God permits.” Continue reading "Do You Forget Your Daily Hepatitis B Antiviral? Why We “Forget” Our Meds, and How to Improve Compliance" →

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 Prevention

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

August 17, 2016 hepbtalk 2 Comments

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.

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.

Liver Cancer, Living with Hepatitis B

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

August 10, 2016 hepbtalk 6 Comments

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" →

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 Treatment, Living with Hepatitis B

Closing a Healthcare Gap: Medicare Finally Covers Hepatitis B Testing in At-risk Seniors

July 13, 2016 hepbtalk

Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

Medicare insurance pays for seniors to get vaccinated against hepatitis B, but it doesn’t cover testing to find out if they’re infected and need life-saving treatment. The federal government is now poised to close this glaring healthcare gap that prevents at-risk seniors from getting screened for hepatitis B.

Last week, the Centers for Medicaid and Medicare Services proposed to cover hepatitis B testing in seniors age 65 and older who may be at risk of the liver infection.

Currently, the majority of the estimated 2 million Americans with chronic hepatitis B are over age 50, and the longer they are infected, the higher their risk of liver damage and cancer. This preventive screening saves lives and is cost-effective, because treatment with antivirals quickly and effectively reduce liver damage.

Until the Hepatitis B Foundation, Hep B United, the Association of Asian Pacific Community Health Organizations and the National Viral Hepatitis Roundtable asked the federal government to cover screening, seniors who wanted to be tested for hepatitis B had to pay for the test themselves. Because hepatitis B is a “silent” infection, causing few symptoms until cirrhosis or cancer develop, nearly two-thirds of Americans living with hepatitis B have never been tested, identified or referred to life-saving treatment.

The highest rate of liver cancer in this country is in Vietnamese-American men, many of whom were never tested for hepatitis B. By the time they are diagnosed, it is often too late. Here’s two more examples of the high cost of this healthcare gap:

The Charles B. Wang Community Health Center in New York City serves a large Asian-American population. When the clinic screened all of its patients for hepatitis B, it found 7.8 percent of patients age 65 and older were chronically infected and 45 percent had been infected in the past.
Another New York City study of African immigrants, which included all ages, found 9.6 percent of them were chronically infected.

Today, the most vulnerable Americans are infected at a rate 10-times the national average, yet until now the government didn’t cover the cost of screening them. Medicare did cover testing if there were signs of liver damage from other medical tests, but in the case of late-stage hepatitis B infections, a diagnosis often comes too late for treatment.

Screening seniors for hepatitis B has a life-saving ripple effect across generations. When hepatitis B is diagnosed in a grandparent, there is an opportunity to educate, test and vaccinate their children and grandchildren who are also at risk.

Under the new guidelines, which also apply to disabled people covered by Medicare Part B, Medicare will reimburse primary care providers when they screen people at risk of hepatitis B, including:

People born in regions with high hepatitis B rates, including Asia, Africa, the Middle East, the Caribbean, Eastern Europe, and some areas of South and Central America.
Second-generation residents who were not vaccinated at birth and whose parents come from high-risk regions, such as sub-Saharan Africa and central and Southeast Asia
HIV-positive persons, injecting drug users, men who have sex with men, and
Family and household members of people with chronic hepatitis B.

This expanded coverage will go far to screen seniors, but gaps remain.

Under the proposed guidelines, only primary care providers can order testing, but many specialists including oncologists, rheumatologists and gastroenterologists see patients at risk for hepatitis B. The expanded coverage should include them and also pharmacists.

Additionally, both providers and the public need to know more about hepatitis B. Today, the majority of people infected with hepatitis B don’t know they’re infected. Patients often don’t share their true stories of activities that may put them at risk of hepatitis B, especially if it includes sexual abuse or injecting drug use, and doctors often don’t have the time or the skills to elicit this vital information. Along with expanded coverage should come public education to provide a common language for these difficult conversations.

Lastly, while providers are screening more Asian-Americans for hepatitis B, many of those at-risk remain undiagnosed, including first- and second-generation African immigrants.

This expanded Medicare coverage is long over-due, but we have a long way to go.

To read the proposed, expanded coverage for hepatitis B testing, please click here.

To submit a comment about the proposed coverage, click here .

Living with Hepatitis B

Changing Jobs? How to Find the Best Employer Health Plan When You Have Hepatitis B

July 6, 2016 hepbtalk 1 Comment

getting-a-job-200x300 — Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

You’ve just landed a new job with a better paycheck, but how do you make sure your new health plan covers the tests, doctor visits and medications needed for your or a family member’s hepatitis B?

Many people with chronic medical conditions find switching health plans can affect the quality of their medical care and requires a careful calculation of what their out-of-pocket healthcare costs may be in the year ahead. There’s a lot to consider and doing your homework is essential to finding the best employer insurance plan for your health and your wallet. Two key questions to ask are:

Can I keep the same family doctor and/or liver specialist? You don’t want to lose the expertise and personal rapport you may have developed with a provider. And, hepatitis B specialists are few and far between in many regions. Find out what doctors and specialists the new plan covers. Some plans offer several options, so find out which one covers your doctor. If the new plan doesn’t include your liver specialist, are you willing to pay extra to stay with him or her? For more information about health insurance terms and shopping for a plan, click here.

How do you make sure the new plan covers your drugs and lab tests? And how do you find this out without disclosing your hepatitis B? First, you cannot be denied coverage — or a job — because of your hepatitis B. The Affordable Care Act prohibits employers from denying anyone coverage because of a pre-existing health condition. However, you need to do your homework and look carefully at the deductibles, copays and coinsurance a plan offers.

When you are offered the job, or when you go for your benefits interview with the HR rep after accepting the job, ask for a copy of their health insurance plan and read it over carefully. It may be available online. Ideally, you want coverage that covers the most and costs the least after you add up your monthly premiums (the amount you pay each month toward insurance coverage) and the copays (the portion you pay for drugs, lab tests, and doctor visits.)

If you or your family’s medical costs are high, you may find that selecting a plan with a high monthly premium may be the most affordable because your copays for tests and medications will be low.

To find out what costs you can expect (knowing you can’t predict every future medical event), try this exercise. Find out how much you paid during the past year for both premiums and out-of-pocket copays for drugs, lab tests, and doctor visits.

Now look at your new plan’s options. Assuming you have the same prescriptions, lab tests and doctor visits, how much would you pay under the new plan? If you have a choice of plans, apply the same test to each. Which plan is the least expensive when both copays and premiums are added up?

Look at a plan’s prescription pricing carefully. While health plans can’t openly refuse to insure people with costly, pre-existing conditions, some inflate the amount you pay for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately discourage people with chronic hepatitis B from choosing their health plans.

Every insurance plan has a drug formula overview in its description, which you have access to. It assigns a price “tier” to each drug. A low-cost generic antibiotic may be a Tier 1 and cost you only a $5 copay while a new, brand-name drug is assigned a pricier Tier 4 or 5 ranking and could be extremely expensive.

Look up any medications you are currently taking, or may take in the near future. For example, if your doctor has warned you that an antiviral may be in your future if your liver enzyme tests continue to rise, you will want to review your plan’s pricing for entecavir or tenofovir. If the health plan charges a high monthly copay for a generic antiviral such as entecavir, you may be able to file a complaint. Email the Hepatitis B Foundation at info@hepb.org for more information.

Reviewing health insurance coverage details isn’t easy, but it’s important to make sure your new health plan will be the best for you and your family.

What do you do if there is a one- or two-month lag before your new coverage begins? When you leave a job, you may be able to keep your old job’s health insurance coverage for several months. This is called COBRA continuation coverage. Under COBRA, you usually have to pay the entire monthly premium yourself, plus a small administrative fee. This may be costly, but if it provides good coverage and if you’re due for your annual physical, lab tests and ultrasound, or if you need to continue antivirals, it may be a good option.

Another option is the Health Insurance Marketplace . Also known as “Obamacare,” this helps uninsured people find and apply for quality, affordable health coverage, and low and middle-income people may qualify for lower costs based on their household size and income. Losing your health insurance because you’re changing jobs may qualify as a “life changing event” that allows you to apply. For more information on marketplace health plans and hepatitis B, please click here.

Another option is short-term or temporary health insurance coverage. For more information click here.