Hep B Blog
Hepatitis B Advocacy, United States

The History of National African Immigrant and Refugee HIV & Hepatitis Awareness Day 2019

 

Each year in September, the Hepatitis B Foundation recognizes National African Immigrant and Refugee HIV and Hepatitis Awareness Day (NAIRHHA). Founded by advocates in Massachusetts, Washington D.C., and New York, NAIRHHA Day has been observed annually on September 9th by healthcare professionals, awareness campaigns, and other organizations since 2014. Although not yet nationally recognized, the multicultural AIDS Coalition (MAC) and the Coalition Against Hepatitis B for People of African Origin (CHIPO) are working to establish NAIRHHA day as its own federally designated awareness day. As explained by Chioma Nnaji, Director at the Multicultural AIDS Coalition’s Africans For Improved Access (AFIA) program, there is a great need to establish NAIRHHA day as its own day.  “Several of the current awareness days are inclusive of African immigrant communities, but do not comprehensively address their unique social factors, cultural diversity as well as divergent histories and experiences in the US.”

Why NAIRHHA Day? 

People born outside of the U.S. often face different health challenges than those born in the country and face various barriers to accessing important healthcare services. African immigrants (AI) are disproportionately burdened by HIV and viral hepatitis. Advocates for NAIRHHA Day recognized the need to address these health issues in the community and thought that a combined awareness day would be the most effective way to reach the largest number of people impacted. 

Hepatitis B presents a significant public health burden for many African countries, and subsequent immigrant populations living in the United States. Although data is limited on hepatitis B infection among African immigrant (AI) and refugee communities in the U.S., studies have shown infection rates are high – between 5 and 18%1,2,3,4,5. One community study in Minnesota even found AIs accounting for 30% of chronic hepatitis B infections 6. AI communities are also known to be disproportionately affected by HIV/AIDS, with diagnosis rates six times higher than the general U.S. population7. Despite this alarming disparity, HIV and hepatitis B awareness, prioritization, and funding has remained limited for this population.

Two of the largest barriers to testing for HIV and viral hepatitis among African immigrants are lack of awareness and stigma. Cultural and religious values shape the way people view illness, and there can be fears around testing and diagnosis of illness, and moral implications for why someone may feel they are at risk. While stigma about HIV/AIDS and hepatitis B often come from within one’s own community and culture, it is primarily driven by lack of awareness. Oftentimes, awareness is low in an individual’s home country because of limited hepatitis education, resources, and healthcare infrastructure.  When they arrive in the U.S., awareness remains low for similar reasons. Community health workers and physicians are vital stakeholders to raise community awareness in a culturally sensitive way to help identify current infections and prevent future ones through vaccination.

Recognizing NAIRHHA Day is important in order to address the numerous barriers to prevention and treatment that African immigrants face. It was also founded to acknowledge the cultural and ethnic differences that influence how African-born individuals interact with their medical community and the concept of illness. The specific goals of the day of recognition include:  

  • Raising awareness about HIV/AIDS and viral hepatitis to eliminate stigma;
  • Learning about ways to protect against HIV, viral hepatitis and other related diseases;
  • Taking control by encouraging screenings and treatment, including viral hepatitis vaccination;
  • Advocating for policies and practices that promote healthy African immigrant communities, families, and individuals. 

What has been done so far? 

The path to federal recognition has been a slow process, but progress has been made! Check out the timeline below for a brief overview of what has been accomplished since the day was created: 

2014:

    • Inaugural city-wide events in Houston, Texas; Boston, Massachusetts; Washington D.C.; Maryland; Seattle, Washington; New York; Ohio and Philadelphia.
    • A national petition was created and 40% of the petitioners are from or live in Massachusetts; 60% of signers are from 33 other states across the US

2015:

2016:

    • Senator Elizabeth Warren gave a proclamation in Massachusetts
    • Created an informational blog post for the National Viral Hepatitis Roundtable 
    • Joined the African immigrant Hepatitis/HIV Twitter chat (#AIHHchat)

2017:

    • Hosted a national webinar focused on barriers and strategies  addressing HIV and hepatitis B among African immigrants
    • Official request to HIV.gov to officially recognize NAIRHHA Day

2018:

    • Hosted an online panel discussion addressing HIV and HBV stigma among African immigrant 
    • New social media campaign
    • National Webinar with HBF and CHIPO focused on stigma

September marks the unofficial beginning of National African Immigrant Heritage Month (NAIHM) – state and federal officials in over thirty states recognize September as NAIHM despite it not being federally declared –  which is why NAIRHHA Day is held on September 9th. Federal recognition would significantly boost awareness within the community and allow for the creation of much-needed resources like culturally sensitive education tools. It would also help to disseminate the important health messages on a larger, national scale. 

This year, the Hepatitis B Foundation and CHIPO are excited to be sponsoring four community events with partners throughout the U.S. to commemorate NAIRHHA day and promote hepatitis B and HIV education and testing in AI communities.

For more information about NAIRHHA Day: 

  • Follow NAIRHHA Day on Twitter @NAIRHHA
  • Check out our blog posts on NAIRHHA Day
  • Visit the CHIPO website and click here for downloadable badges and infographics
  • Contact Chioma, Director of the Multicultural AIDS Coalition, at cnnaji@mac-boston.org to get involved in advocacy for NAIRHHA Day

References:

  1. Kowdley KV, Wang CC, Welch S, Roberts H, Brosgart CL. (2012). Prevalence of chronic hepatitis B among foreign-born persons living in the United States by country of origin. Hepatology, 56(2), 422-433. And Painter. 2011. The increasing burden of imported chronic hepatitis B—United States, 1974-2008. PLoS ONE 6(12): e27717.
  2. Chandrasekar, E., Song, S., Johnson, M., Harris, A. M., Kaufman, G. I., Freedman, D., et al. (2016). A novel strategy to increase identification of African-born people with chronic hepatitis B virus infection in the Chicago metropolitan area, 2012-2014. Preventing Chronic Disease, 13, E118.
  3.  Edberg, M., Cleary, S., & Vyas, A. (2011). A trajectory model for understanding and assessing health disparities in Immigrant/Refugee communities. Journal of Immigrant and Minority Health, 13(3), 576-584.
  4.  Kowdley, K. V., Wang, C. C., Welch, S., Roberts, H., & Brosgart, C. L. (2012). Prevalence of chronic hepatitis B among foreign‐born persons living in the united states by country of origin. Hepatology, 56(2), 422-433.
  5.  Ugwu, C., Varkey, P., Bagniewski, S., & Lesnick, T. (2008). Sero-epidemiology of hepatitis B among new refugees to Minnesota. Journal of Immigrant and Minority Health, 10(5), 469-474.
  6.  Kim WR, Benson JT, Therneau TM, Torgerson HA, Yawn BP, Melton LJ 3d. Changing epidemiology of hepatitis B in a U.S. community. Hepatology 2004;39(3):811–6.
  7.  Blanas, D. A., Nichols, K., Bekele, M., Lugg, A., Kerani, R. P., & Horowitz, C. R. (2013). HIV/AIDS among African-born residents in the United States. Journal of immigrant and minority health, 15(4), 718–724.

HDV, Hepatitis Delta (HDV), Living with Hepatitis B

Printable Hepatitis Delta Fact Sheets for At-Risk Populations (Available in 5 Languages!)

 

Hepatitis delta is estimated to affect 15-20 million people globally who are also living with hepatitis B. Hepatitis delta’s geographic distribution is not uniform, and does not always follow regions of highest hepatitis B prevalence. Although more recent data is sparse, regions of higher coinfection are thought to be in Mongolia, Eastern Europe (particularly Romania, Russia, Georgia, Turkey), Pakistan, the Middle East and the Amazonian River Basin. The American Association for the Study of Liver Diseases (AASLD) recommends that hepatitis B patients from these areas be tested for hepatitis delta. If you are a community member or community health worker or physician, please utilize our printable fact sheets to help raise awareness about hepatitis B and delta!

Fact sheets are available in 5 languages, including English, Mongolian, Romanian, Russian and Spanish!

English for Patients    English for Providers

Mongolian for Patients   Mongolian for Providers

Romanian for Patients   Romanian for Providers

Russian for Patients   Russian for Providers

Spanish for Patients   Spanish for Providers

For more information on hepatitis B and delta coinfection, visit www.hepdconnect.org or contact us at connect@hepdconnect.org.

HBV, Hepatitis B Advocacy, Hepatitis B Treatment, Liver Health, Living with Hepatitis B

CVS Caremark : Re-Add Vemlidy To Your Formulary

UPDATE: The Hepatitis B Foundation and Hep B United, along with our network of patients, providers and partners, has successfully advocated for improved access to the hepatitis B medication Vemlidy in the US.! In July 2019 CVS Caremark – a subsidiary of CVS Health and one of the nation’s leading pharmacy benefit managers – stopped providing coverage for Vemlidy. This decision impacted thousands of Americans who rely on this life-saving drug to manage their hepatitis B.

Our members took swift action. Together, we sent over 20 letters from partner organizations and gathered over 250 individual signatures for a petition encouraging CVS Caremark to provide coverage for this essential medication. 
The company announced last week that they will resume coverage of Vemlidy for their plan members as early as October 2019! Thank you to everyone who helped us to advocate for this important change. We firmly believe that all FDA-approved medications should be available for doctors to prescribe to their patients, and this change will ensure that those on CVS Caremark plans have access to this life-saving drug.
What’s Next:
On October 1, 2019, Vemlidy will be processed for those under the Advanced Control Specialty Formulary. For those with a Value Formulary, Vemlidy will be covered beginning on January 1, 2020.
Until January 1st, Gilead Sciences – the creators of Vemlidy – will provide $1,000 a month (for up to $5,000) to offset the costs of treatment. Those interested can go to Gilead’s website and apply for a co-pay card; insurance is not needed.
Thank you to everyone who signed the petition, wrote a letter, or simply shared the information. Because of you, those who rely on Vemlidy now have one less barrier to accessing their needed treatment!

A few months ago, CVS Caremark – a subsidiary of CVS Health – announced their intentions to remove Vemlidy from their list of covered medications, or formulary. With over 2.2 million individuals in the United States living with chronic hepatitis B, this decision impacts thousands of Americans who rely on this life-saving drug to prevent cirrhosis and liver cancer.

CVS Caremark is the second-largest Pharmacy Benefits Manager (PBM) in the United States. As a PBM, Caremark manages prescription drug benefit plans for payers including health insurers and large employers. One of their main tasks is to negotiate drug prices with manufacturers and develop and maintain formularies on behalf of health insurers, which influence which drugs are available to patients on their prescription drug plan and determine out-of-pocket costs. Negotiations between PBMs and drug companies are common. However, they create a dangerous, unstable health and financial situation for those suffering from chronic illnesses.

When it comes to the treatment of chronic illnesses like hepatitis B, medical decisions are best made based upon knowledgeable and informed discussions between the doctor and the patient. After all, doctors have been tracking and monitoring how the virus impacts an individual for many months, if not years, and a patient is aware of how their body reacts to certain medications. CVS Caremark’s decision to remove Vemlidy from their formularies limits the ability of providers to make the best treatment choice for their individual hepatitis B patients.

Vemlidy is one of just three first-line hepatitis B treatments. First-line treatments are medications that have been proven to be highly effective with the least amount of side effects. For some individuals, this drug is the best option, as other FDA treatments can increase their risk of kidney disease and bone density loss. Hepatitis B expert and Medical Director of the Hepatitis B Foundation Robert G Gish, MD, notes two separate studies where tenofovir alafenamide (TAF) (Vemlidy) had lower amounts of bone density loss and kidney impairment than tenofovir disoproxil fumarate (entecavir), another first-line treatment. In order to properly help their patients, doctors need to have a full range of tools at their disposal. All FDA approved medications should be available for doctors to choose from.

The Hepatitis B Foundation’s Medical and Scientific Advisory Board is also concerned about the negative health impacts of Caremark’s decision. “TAF is less likely to cause adverse bone mineral density and renal dysfunctions than Tenofovir disoproxil fumarate (TDF). This is true not only for patients at risk of these complications but the overall hepatitis B patient population as demonstrated in clinical studies comparing TAF and TDF. By removing Vemlidy from the formulary plan, CVS Caremark is implementing a significant barrier to thousands of Americans who may need and/or rely on this drug to manage their hepatitis B….We are not advocating that all hepatitis B patients have to be treated with TAF. We believe that this decision should be made by the patient’s doctor with the patient.”

What Does This Mean: 

Now that Vemlidy has been removed from Caremark’s list of covered treatments, those living with chronic hepatitis B will either have to pay the full price or switch to another medication. To put this into perspective, the average retail price of Vemlidy is $1,350 USD a month. The average cash price reached $1,650 USD in July. There is no generic version of the drug. Like other hepatitis B treatments, Vemlidy must be taken daily over the course of several years to be effective; an individual paying the average retail price would have to pay approximately $16,200 a year to access their medication.

Others will be forced to change from Vemlidy to a similar treatment that is cheaper, but may be less effective with safety issues. This practice is known as non-medical switching: when insurers or PBMs make changes to a formulary primarily due to financial negotiations with manufacturers, in exchange for greater market share.

According to the Alliance for Patient Access, non-medical switching is associated with poor health outcomes. One of their recent studies found that patients who had been switched off their preferred medication experienced complications from the new medication. One in 10 reported being hospitalized for complications after the switch, approximately 40% stopped taking their medication completely, and 60% reported side effects from the new medication. These complications are extremely dangerous for individuals taking hepatitis B medication, as stopping suddenly and without consulting an expert can cause the virus to flare and increase the risk of liver disease, and liver cancer.

Taking Action

Hep B United (HBU) – a program of the Hepatitis B Foundation and a national coalition of over 40 organizations – has started a petition and will be sending a letter to CVS Caremark.

Individuals can ask CVS Caremark to reinstate Vemlidy by signing this petition! Organizations can add their names to HBU’s official letter commenting on Caremark’s decision. We hope that CVS Caremark will honor their commitment to the health of Americans and add Vemlidy back on their formularies!

Uncategorized

The Global Need for Hepatitis B Immunization

In the United States, August is National Immunization Awareness Month (NIAM)! During this time, health care providers, educators, and advocates use their resources to inform the public about the safety and importance of vaccines. NIAM was established by the Centers for Disease Control and Prevention (CDC) to encourage individuals of all ages to stay up-to-date with their vaccines and make sure that they are protected. The modern hepatitis B vaccine has been widely used – with over 1 billion doses given – since it was created in 1985, and has been proven to be one of the safest and most effective vaccines in the world. So why do we need to promote the hepatitis B vaccine during NIAM? 

United States: 

On a national level, vaccination rates for hepatitis B are far below where they should be despite being the most effective way to prevent transmission. In the United States, while 91% of children complete the hepatitis B vaccine series, only 64% of children who are born in hospitals are given the hepatitis B birth dose (first dose of the vaccine) as recommended by the CDC – which means that there is much room for improvement. And without the follow-up doses, children are still vulnerable to potential exposures; one dose of the vaccine is not enough. 

Adults in the United States have extremely low rates of vaccination, primarily because many were born before the vaccine became a healthcare standard and mandated for school. According to the CDC, just 25% of adults have received all three doses. Coupled with the recent increase in injection drug use, low vaccination rates among adults have been driving a rise in acute hepatitis B cases across the nation. The good news is that adults can be fully vaccinated with just 2 doses of the Heplisav-B vaccine! This new vaccine has proven to be highly effective and can be completed in just one month.  

Globally: 

Internationally, vaccine rates differ from country to country due to issues with storage, access, affordability, general awareness and priorities. In July 2019, the World Health Organization (WHO) announced that 189 countries now provide the vaccine for infants on a national level, but the global coverage of the birth dose is just 42%. The birth dose is significant for a number of reasons. Ninety percent of babies and up to 50% of young children will progress to chronic hepatitis B if they are infected. Since only 10% of the 292 million chronically infected individuals know about their infection, there is the potential for friends or family members to unknowingly transmit the virus to an infant or young child. In addition, a mother who is unaware of her status has the potential to pass the virus to her newborn via the delivery process. The birth dose significantly lowers the risk of transmission in both of the previous scenarios. That is why it is critical pregnant women are tested early in their pregnancy so they are aware of their infection and can ensure the birth dose is available.

In some countries, the pentavalent vaccine is offered. This vaccine protects against five diseases, including hepatitis B. However, it cannot be administered until the baby is at least 6 weeks old, which leaves a gap in the baby’s protection. The monovalent hepatitis B vaccine should be given to all infants in order to make sure they are covered during this vulnerable time period. It is especially important for infants born to hepatitis B surface antigen positive  (HBsAg +) mothers to receive the monovalent vaccine within 12-24 hours of birth to prevent transmission. 

Vaccines are also essential for healthcare workers. WHO estimates that out of the 3 million healthcare workers who are exposed to bloodborne diseases a year, approximately 2 million of those exposures are to hepatitis B. These exposures, which largely occur in countries where hepatitis B is common, put unvaccinated healthcare workers at risk. International recommendations list hepatitis B as one of the essential vaccines  for health occupations. WHO also reports that unsanitary healthcare practices, such as reusing sharp objects that have not been sterilized following proper infection control practices, were responsible for nearly 2 million hepatitis B infections globally in 2010. Infections from an accidental exposure can easily be avoided with the vaccine!

NIAM is a reminder that a vaccine is only effective at preventing disease when it is used widely. Governments, healthcare providers, and individuals all play an important role in ensuring that people of all ages – especially high-risk individuals – are protected. You can do your part today by asking your doctor for the 3-panel hepatitis B blood test. If your results come back negative (HBsAg -, HBsAb -, and HBcAb -), ask them to begin the vaccination series! In two or three simple doses, you can be protected from the largest risk factor for liver disease and liver cancer!

About Hepatitis B, Hepatitis B Prevention

Hepatitis B is NOT A Genetic Disease – And Here’s Why

There are many misconceptions about the hepatitis B virus. One recurring one is the myth that hepatitis B is a genetic or hereditary disease. The belief is that because multiple family members can be infected by hepatitis B, it must be a virus that runs in families. This is not true. Hepatitis B is NOT genetic. Hepatitis B is spread through direct contact with infected blood. Although transmission can occur a number of different ways, it does not happen at conception or while the child is developing in the uterus. 

Let’s start by breaking down what it means for something to be genetic or hereditary: 

A genetic disease is caused by an error in a person’s genes and is   carried by an individual in their genes. This type of disease may be passed on to a person’s child (which means it is hereditary) or it can occur spontaneously as a result of a gene mutation while a child is growing in the womb. Genes – which make up each of our unique DNA strands – are passed on to a child from both the mother and the father. Therefore, if a mother or father carries a certain hereditary disease or genetic trait, such as brown hair or green eyes, the child has the ability to have that as well. 

Hepatitis B is not a genetic disease because it does not exist in a person’s genes. It is not carried in the egg of a woman or the sperm of a man. The hepatitis B virus exists in the liver cells and circulates in the bloodstream. Unlike a genetic disease, a person is not born with the hepatitis B virus already in their bodies. Instead, the virus is passed from mother to baby during childbirth through infected blood passing from the mother to the child during the physical delivery process. If a pregnant woman tests positive for hepatitis B, she can pass the virus to her newborn through infected blood and tiny tears in the skin that occur during childbirth. Oftentimes, these tears are unable to be seen by the human eye but can still allow for the virus to pass through and make direct contact with mucous membranes (“wet skin”) of the eyes, ears, nose, and mouth of the infant

A number of different factors play a role in determining if a newborn will contract hepatitis B from their mother: the mother’s viral load levels, the mother’s knowledge of her infection, and if the newborn receives post-exposure prophylaxis. Post-exposure prophylaxis is the key to preventing mother-to-child transmission and consists of two parts: the first dose of the hepatitis B vaccine and hepatitis B immunoglobulin (HBIG). Both shots need to be administered 1) in two different limbs and 2) within 12 hours of birth in order to be as effective as possible. Once the shots have been given, the infant should complete the standard hepatitis B vaccine schedule in order to ensure that they are protected for life! *Please note that HBIG is not recommended by WHO, so it may not be recommended or available in all countries.

Commonly Asked Questions: 

It can be difficult to understand facts when they do not align with what you have been told for many years, so we’ve answered some of the most common responses to our information below: 

  1.  If it is not genetic, how is it sexually transmitted? 

 This question goes back to the topic of genes. A genetic disease differs from a sexually transmitted disease because of where the virus is hosted during transmission from one individual to another. A genetic disease is given to a person via cellular DNA while a baby is developing in the mother’s womb. Sexual transmission occurs because the virus is present in blood and sexual fluids and can be transmitted through very tiny, microscopic tears as a result of sexual intercourse.

2.  If it’s not genetic, why do multiple members of my family have it? 

Families tend to share objects – and that’s okay! However, sharp objects like earrings and body jewelry or personal care items like razors, nail clippers, or toothbrushes, can make tiny, microscopic cuts and abrasions in our skin that bleed. Sometimes, we don’t even notice! When a family member uses an object with trace amounts of infected blood and they also have a wound, such as a mouth sore,  cut, or freshly shaved skin, the virus can spread to the uninfected individual. Because hepatitis B is so infectious (at least 50 times more infectious than HIV!), even small amounts of infected blood can cause a person to become infected. Therefore, it is recommended that personal items and sharp objects are not shared – even between family members, or ensure all family members are properly vaccinated for hepatitis B and confirm they are protected

Accidents also occur frequently in households, and sometimes blood is spilled. The virus can live on surfaces outside of the body, so it is essential to properly clean up any blood spills. The key to safely cleaning up blood and killing the virus is to wear gloves and use a fresh diluted bleach solution of 1 part bleach mixed with 9 parts water. 

It’s extremely important to note that infected blood must come into contact with uninfected blood or a mucous membrane for transmission to occur. A person cannot become infected from skin-to-skin contact such as shaking hands or hugging, sharing utensils or food prepared by an infected individual, or even kissing.

Prevention: 

The best thing to remember is that hepatitis B is preventable, even if a child is born to a mother living with chronic hepatitis B! Always remember to wash your hands thoroughly with soap and hot water after any possible exposure to blood. In addition, any family members and loved ones who test negative for the hepatitis B surface antigen (HBsAg) and did not recover from a past infection (HBcAb total negative) should get vaccinated to prevent any possible transmission. The vaccine is one of the most effective vaccines in the world! 

Hepatitis B Advocacy

Eliminating Hepatitis B: Highlights of the Hep B United Summit 2019

Last week, the Hepatitis B Foundation, Hep B United, and the Association of Asian Pacific Community Health Organizations (AAPCHO) hosted over 100 hepatitis B experts, advocates, and public health professionals in Washington D.C. to collaborate and share best practices on how to advance the elimination of hepatitis B. This year’s theme was Eliminating Hepatitis B: Local Change, Global Impact. The 7th annual Summit began with a day of advocacy on Capitol Hill, where attendees met with their states’ congressional members to make a case for legislative prioritization of the epidemic and increased funding for hepatitis B and liver cancer research. Following Advocacy Day were two days of educational sessions, networking, and coalition building activities that aimed to strengthen and expand our ability to address hepatitis B on a national level. 

The Summit was live-streamed on Hep B United’s Facebook; all of the sessions can be viewed here! Below are a few highlights of the Summit. Be sure to look out for the annual Summit Report in the upcoming weeks for a more comprehensive overview of the events! 

Highlights: 

  • We spoke to nearly  60 congressional offices. Some of our advocates got to personally speak with Representative Grace Meng, Representative Judy Chu, Senator Tammy Duckworth, Representative Alexandria Ocasio-Cortez, and Representative Ilhan Omar!
  • Dr. Tim Block, co-founder, and President of the Hepatitis B Foundation, provided an update on the path to a hepatitis B cure and the stages of therapeutic drug development research. 
  • Right before the Summit, it was announced that 6 of our partners received grants from the HHS Office of Minority Health to conduct hepatitis B screening, education, linkage to care! 
  • Representatives Judy Chu and Grace Meng stopped by our Congressional Reception to share some inspiring words!
  • The new director of the Centers for Disease Control and Prevention’s Division of Viral Hepatitis, Dr. Caroyln Wester, MD, MPH, stopped by to share current hepatitis B strategies at the CDC, and to emphasize the importance of funding. 
  • Five of our #justB storytellers shared their diverse personal stories about their hepatitis B journeys. Each story will be featured in the upcoming months, so be sure to stay tuned!
  • The New York City Health Department shared their research and work on the “Hep B  Moms Project”, which provides in-language services to hepatitis B positive mothers and helps link them to care. 
  • We displayed 14 hepatitis B-related research posters from partners across the nation! 
  • Our partners helped us to create an interactive World Hepatitis Day exhibit that was displayed on Capitol Hill on Friday, July 26th! The exhibit featured a map of all of the places where Hep B United’s partners work endlessly to eliminate hepatitis, and pledges from our partners & passersby to help #FindTheMissingMillions! 

 

 

 

Check out some more photos on Facebook! 

The Summit was a success, with partners feeling inspired and invigorated to continue the fight against hepatitis B. In addition to partnership building and creating political awareness, the annual gathering is a reminder of the power of collaboration, dedication, and persistence. 

HBV, Hepatitis B Advocacy

Join the Conversation at the 2019 Hep B United Summit; Watch Summit Sessions On Facebook Live!

 

 

The annual Hep B United Summit, organized by the Hepatitis B Foundation, convenes in Washington D.C. from Wednesday, July 24 through Thursday, July 25. The theme of the 2019 summit is Eliminating Hepatitis B: Local Change, Global Impact. 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 sessions on Facebook Live. You can also follow the conversation at the Summit on Twitter with #Hepbunite19!

Facebook Live video streaming is available to all Pages and profiles on Facebook. Check out the agenda below and go to the Hep B United Facebook Page to view the live broadcast. Some breakout sessions may be broadcast from the Hepatitis B Foundation Facebook Page. Sessions will also be available following the broadcast for those who are not able to join us live.

Here are the details on the sessions that will be broadcast on Hep B United’s Facebook Live unless noted otherwise:

Day 1 – Wednesday July 24:

8:00 – 9:00 AM:  Welcome and Introductions
Tim Block, PhD, President & Co-Founder, Hepatitis B Foundation
Chari Cohen, DrPH, MPH, Co-Chair, Hep B United and Senior Vice President, Hepatitis B Foundation
Jeff Caballero, MPH, Co-Chair, Hep B United and Executive Director, Association of Asian Pacific Community Health Organizations (AAPCHO)

9:00 AM: CDC Division of Viral Hepatitis 
Carolyn Wester, MD, MPH, Director, Division of Viral Hepatitis, Centers for Disease Control and Prevention

9:30 AM: The Path to a Hepatitis B Cure
Tim Block, PhD, President and Co-Founder, Hepatitis B Foundation

10:15 AM: Local Initiatives: Eliminating Hepatitis B Across the Lifespan
Moderator: Catherine Freeland, MPH, Public Health Program Manager, Hepatitis B Foundation
Panelists:
Moon S. Chen, MPH, PhD, Professor, University of California – Davis
Liz Tang, Health Care Access Specialist, and Farma Pene, Health Care Coordinator, New York City Department of Health & Mental Hygiene
Chelsie Porter, MPH, Prevention & Outreach Program Manager, Hepatitis Education Project

11:15 AM: Integrating Systems Level Changes to Eliminate Hepatitis B
Moderator: Chari Cohen, DrPH, MPH, Senior Vice President, Hepatitis B Foundation
Panelists:        
Jeff Caballero, MPH, Executive Director, AAPCHO
Su Wang, MD, MPH, Medical Director, Center for Asian Health, Saint Barnabas Medical Center, Livingston, NJ
Richard Andrews, MD, Research Director, HOPE Clinic, Houston, TX

12:30 PM: Lunch Keynote Presentation
Center for Disease Analysis Foundation
Devin Razavi-Shearer, Hepatitis B/D Project Lead

 1:45-3:00 PM  BREAKOUT SESSIONS I

Innovative Strategies to Conduct HBV Education, Testing, and Linkage to Care
Discuss effective outreach strategies to conduct HBV education, testing, and patient navigation among high-risk communities.
Moderator: Sherry Chen, MPH, CHES, CDC Division of Viral Hepatitis

Panelists:
Paul Lee and Ohkyun Ko, Korean Community Services, New York, NY
Chooson Byambaa & Tuya Lkhaijav, Hepatitis B Initiative of Washington, DC
Alia Southworth, Asian Health Coalition, Chicago, IL

Increasing HBV Provider Education (HepBFoundation Facebook)
Join the National Task Force on Hepatitis B to discuss the development of provider education tools to manage chronic hepatitis B in the primary care setting.
Facilitators: Amy Trang, PhD, MEd, Administrator and Richard Andrews, MD, Co-Chair, National Task Force on Hepatitis B

 

3:15 PM – 4:45 PM     BREAKOUT SESSIONS II

Local, National, and Global Efforts to Increase HBV Testing and Education Among African Communities (HepBFounation Facebook)
Discuss pioneering efforts and strategies to raise awareness and promote testing in African communities, whose hepatitis B burden rivals that of Asian Americans. Learn tips for education and how your organization can begin or expand current work.
Moderator: Cynthia Jorgensen, DrPH, CDC Division of Viral Hepatitis

Panelists:
Oni Richards, African Family Health Organization, Philadelphia, PA
Chioma Nnaji, Multicultural AIDS Coalition, Boston, MA
Sierra Pellechio, CHES, Hepatitis B Foundation
Catherine Freeland, MPH, Hepatitis B Foundation

Combating HBV-Related Stigma and Discrimination
Discuss the impact of HBV-related stigma and development of policies to combat institutional discrimination.
Moderator: Maureen Kamischke, Hepatitis B Foundation

Panelists:
Vrushabh Shah, MPH, NASTAD
Nadine Shiroma, Alexa Canizzo,, Hepatitis B Foundation

 

 Day 2 – Thursday July 25

8:30 AM: National Action Plan to Eliminate Hepatitis B
Carol Jimenez, Deputy Director for Strategic Initiatives,  Office of Infectious Disease and HIV/AIDS Policy, U.S. Department of Health and Human Services

9:00 AM: Global Efforts to Eliminate Hepatitis B
Su Wang, MD, MPH, President-Elect, World Hepatitis Alliance

  9:30 AM: Patients Driving Change: #justB Storytelling Campaign
Moderator: Rhea Racho, MPAff, Public Policy & Program Manager, Hepatitis B Foundation
#justB Storytellers Panel: Cuc Kim Vu, Peter Vo, Bright A., Xuan Phan, and Jacki Chen

11:00 AM: Improving Access to Hepatitis B Treatment
Panelists:
Michaela Jackson, MS, Public Health & Outreach Program Coordinator, Hepatitis B Foundation              
Alyssa Gallipani, PharmD, BCACP, Ambulatory Care Specialist and Clinical Assistant Professor of Pharmacy Practice, RWJ Barnabas Health & Fairleigh Dickinson University
Carl Schmid, MBA, Deputy Executive, Director, The AIDS Institute

 12:15 PM:

EliminatingTuberculosis in Asian American Communities
Nickolas Deluca, PhD, Branch Chief, Communications, Education, and Behavioral Studies, Division of TB Elimination, Centers for Disease Control and Prevention

 1:00 PM:  HBU Coalition Strategies
Facilitator: Amy Trang, PhD, Administrator, National Task Force on Hepatitis B

Not able to join the sessions with Facebook Live? Follow the conversation on Twitter using the #Hepbunite19 hashtag. Follow the events, retweet and engage with event attendees and help us raise hepatitis B awareness in the U.S. and around the globe. We’ll also be posting on twitter during our Advocacy Day, Tuesday, July 23rd.

World Hepatitis Day is July 28th, and this Summit is an 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 hepatitis B awareness, include: #NOhep, #KnowHepB, #WorldHepatitisDay, #WorldHepDay, #WHD2019, #FindTheMissingMillions #hepatitis, #hepatitisB, #HBV, #hepB, #justB. Connect with, follow and engage with fellow partners and advocates on twitter to keep the hep B conversation going during the Hep B United Summit, World Hepatitis Day events, and beyond.

Check out: @AAPCHOpolicy, @aidsadvocacy, @alex_daleks, @aphfsd, @APPEALhealth, @AVACNow, @bentheactivator, @CAHE_AHC, @catherineafree, @CDAFound, @cdchep, @CDC_TB, @ChoosonB, @hepBaware, @HBIDC, @HepBFoundation, @HepBpolicy, @HepBUnited, @HepBUnitedPhila, @hepdconnect, @HepEduProject, @HepFreeHawaii, @hepfreeNYC, @HHS_ViralHep, @HOPECHC, @iwgroup, @jacki0362, @jeffaapcho, @KCSNY, @kmoraras, @Liz98223514, @nirahjohnson, @NYU_CSAAH, @ponnivp, @randrews98, @RheaRacho, @swang8 @tuugiil73

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

We’re having a World Hepatitis Day exhibit on Capitol Hill in the Rayburn Building Foyer,  Friday, July 26th from 10 am to 3 pm. We’ll be asking legislators and partners how they plan to “Find the Missing Millions” living with hepatitis B.

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

HDV, Hepatitis Delta (HDV), Living with Hepatitis B

My Hepatitis B Viral Load is Low (Or Undetectable), Am I Still Infected with Hepatitis Delta?

For people who have been diagnosed with chronic hepatitis B and delta coinfection, a low or undetectable hepatitis B viral load does not usually indicate that they’ve cleared both infections. This is because, in cases of coinfection, hepatitis delta usually becomes the dominant virus, and suppresses hepatitis B, slowing or even stopping its replication entirely. If someone is still positive for the hepatitis B surface antigen (HBsAg), the hepatitis delta virus can still replicate (often with copies in the millions) and cause potential liver damage  1. For this reason, the test to measure hepatitis delta activity, the HDV RNA test, is important in disease monitoring and management  2,3. Available since 2013, the HDV RNA test can be acquired internationally through the Centers for Disease Control and Prevention (CDC), and from several labs in the US. 

For those suspected of having acute hepatitis B and delta coinfection, HBsAg testing should follow 6 months after initial diagnosis. If HBsAg is negative (non-reactive), both infections are likely to have cleared. It’s important to remember that people who contract hepatitis B and delta during one exposure are likely to clear both viruses.  If HBsAg is positive (reactive) after 6 months, both infections are likely chronic (life-long). Those who are known to have a chronic hepatitis B infection and then become infected with hepatitis delta later on, they are likely to develop chronic coinfections.  

Following diagnosis with hepatitis B, with or without delta coinfection, it is important to have close, household contacts and sexual partners screened, and to follow simple prevention measures and practice safe sex using condoms.  

Both hepatitis B and delta are prevented with the safe and effective hepatitis B vaccine series.  

For more information on hepatitis B and delta coinfection, visit www.hepdconnect.org or contact us at connect@hepdconnect.org.  

References: 

  1. Huang, C. R., & Lo, S. J. (2014). Hepatitis D virus infection, replication and cross-talk with the hepatitisB virus. World journal of gastroenterology, 20(40), 14589–14597. 
  2. YurdaydınC, Tabak F, Idilman R; Viral Hepatitis Guidelines Study Group. Diagnosis, management and treatment of hepatitis delta virus infection: Turkey 2017 Clinical Practice Guidelines. Turk J Gastroenterol 2017; 28(Suppl 2); S84-S89. Available at: https://www.turkjgastroenterol.org/sayilar/304/buyuk/S84-S89.pdf 
  3. Tseng, C. H., & Lai, M. M. Hepatitis delta virus RNA replication.Viruses, 1(3), 818–831.  

Uncategorized

Developing a Strategic Plan to Cure Hepatitis B with the NIH

As you may know, two years ago the Hepatitis B Foundation started our Hepatitis B Cure Campaign, to promote increased public-sector investment in hepatitis B and liver cancer research. We have made great progress and wanted to provide an update. Earlier this year, the HBF submitted House Labor-HHS report language, and HBF President Dr. Timothy Block met with the National Institutes of Health’s (NIH) Deputy Director Dr. Lawrence Tabak, to urge the NIH to establish an inter-institute working group to coordinate NIH research focused on finding a cure for hepatitis B and liver cancer. 

We are pleased to let you know that due to this outreach, the NIH is establishing a Trans-Institute Hepatitis B Working Group. This Working Group has been tasked with developing a Strategic Plan to Cure Hepatitis B, which Dr. Tabak stated should be a “huge boost” to the shared goal of finding a cure for hepatitis B. The formation of the group follows the NIH’s release in February 2019 of a Request for Information (RFI) that asked members of the research community to provide input on a strategic framework for the Working Group. The RFI suggested the Strategic Plan focus on three areas of research that are essential to developing a cure for hepatitis B:

  • Understanding Hepatitis B Biology
  • Developing Tools and Resources
  • Developing Strategies to Cure Hepatitis B

NIH has reported that there was a very enthusiastic response to the RFI, and they are currently working to finalize an RFI Analysis Report and will include all the responses as an appendix. The report will help to guide the Working Group as they create their strategic elimination plan. Both the Trans-Institute Hepatitis B Cure Strategic Plan and the RFI Analysis Report will be made available to you in the coming months.

The Trans-Institute Hepatitis B Working Group is comprised of representatives from various Institutes within the NIH: the National Institute of Allergy and Infectious Diseases (NIAID), the National Cancer Institute (NCI), the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK), and the National Institute on Minority Health and Health Disparities (NIMHD). NIAID has been asked to lead and coordinate the Working Group.

This is good news as we work towards finding a cure for hepatitis B. All increased investments help support and implement the goal to eliminate hepatitis B globally. Having new treatments, and especially a cure, will be critical to reach this goal. Seeing the increased interest among the NIH, as well as the nation’s hepatitis B experts and researchers, is an exciting step in the journey to find a cure. 

Hepatitis B Advocacy, Hepatitis B Treatment, Living with Hepatitis B, Uncategorized

We’re Here to Help: New Resource to Improve Medication Access in the U.S.

Are you a hepatitis B patient living in the United States? Are you taking entecavir or tenofovir disoproxil fumarate (TDF) to help manage your hepatitis B infection? Thanks to the Hepatitis B Foundation’s new strategic partnership with Rx Outreach – America’s largest fully licensed, non-profit, mail order pharmacy and Patient Assistance Program – you may be able to receive your medication for less than 5% of the average retail price!

Each year, we answer thousands of national and international phone calls, emails, and social media messages from people who have been impacted by hepatitis B. Over the past year, we have seen a significant increase in calls regarding access to medication. The majority of those calls have been from people living in the United States. The ability to access medications is more than just having them available at a local pharmacy – it is about the price as well.

In the United States, life-saving generic treatments can cost more than $830 a month on average. As treatments are typically taken for several years after a person begins, paying such high monthly out-of-pocket costs simply isn’t an option for most people. That’s why we partnered with Rx Outreach to increase patient accessibility to life-saving hepatitis B medications.

We believe that affordable treatments should be low-cost and widely available to everyone who needs them. Hepatitis B antiviral treatments need to be taken daily in order to be effective, and a lack of affordable options force some individuals who are living with chronic hepatitis B to avoid diagnosis and treatment, to stop taking medication or to only take it sporadically, which increases their risk of developing cirrhosis or liver cancer. Our new partnership can help eliminate the need for such potentially harmful actions by providing the same medication at a much lower cost than retail pharmacies, pharmaceutical companies, and insurance plans can offer.

Rx Outreach provides a 30-day supply of entecavir and TDF – two of the most effective, common, and preferred treatments – through the mail. Interested individuals can enroll in the program with 3 simple steps. If you need to transfer your prescription from another pharmacy, you can do that too!

Eligibility Requirements:

Eligibility is based upon household income, not on insurance status or prescription drug coverage. To be eligible for Rx Outreach’s pricing, please review the chart below or you can check your eligibility here. If it appears that you do not qualify but you believe that you should, you can also call Rx Outreach and a representative will assist you.

Our partnership with Rx Outreach will help to fill a gap in access to affordable medication and help to lessen the burden of one of the many forms of discrimination that those living with hepatitis B must face. It offers more than 1,000 medication strengths at affordable prices. Since 2010, Rx Outreach has saved people in need more than $662 million on their prescription medication.

Baruch S. Blumberg Institute