Hep B Blog

Category Archives: Hepatitis B Advocacy

How To Talk To Your Doctor About Hep B in 5 Minutes

 

Going to the doctor can be an intimidating experience for anyone, but perhaps even more so when you’re living with hepatitis B. You have plenty of questions to ask and not enough time! This guide can help you focus on the important questions and become more comfortable discussing your infection with your doctor. 

  • Be Prepared: With only a limited amount of time to discuss concerns, it is essential to ask what matters most. Write down questions that you have been wondering about in order from most urgent to least. This will ensure that you get the answers that you need the most before you run out of time. We have a list of helpful questions that you can take, or they can help you create your own! You can also take a second person along to take notes and help ask follow-up questions. It may be helpful to organize your questions, previous test results, and any notes that you may have in a single folder to take along with you.

 

  • Do Your Research: Hepatitis B is a complex virus and its lack of symptoms can make it tricky to grasp what is going on inside of your body.  Familiarizing yourself with hepatitis B blood test results, liver enzyme tests, or liver function tests and being aware of test results out of normal ranges can go a long way in helping you understand your own body, and to figure out what questions you should ask. Remember to always get copies of all of your test results so you can monitor how they change over time. If something is abnormal, you can address it immediately. 

 

Be sure you are doing your research on trustworthy websites! Misinformation can be damaging, so it is extremely important to find information that is based upon scientific evidence. How do you know if the information is trustworthy? Some common tips are to look for information from trusted institutions, such as a government health department like the Centers for Disease Control and Prevention (CDC) or established organizations like the American Association for the Study of Liver Diseases (AASLD). You should avoid articles that have anonymous authors, and avoid getting information directly from a website from a company that is trying to sell you something. Academic institutions are a great place to look for information, like a local university or peer-reviewed journal articles. 

  • Review the Guidelines: There are several hepatitis B guidelines on how to prevent, treat, and manage hepatitis B. These are designed by medical experts to help doctors around the world make informed decisions about an individual’s status, and are a great source of information. While some individuals may not qualify for treatment, you can take the guidelines to your appointment and ask the doctor to explain why or why not you are a candidate for treatment at the moment. Just be sure to highlight the parts you wish to review beforehand! View the guidelines here. 

 

  • The doctor is the expert – but so are you!: Doctors can be extremely knowledgeable, but you are the one living in your own body! While hepatitis B often does not have symptoms, other factors can have an impact on your infection. One example is medication. Some medications may interact negatively with your liver, which can have an impact on the virus and result in serious consequences. If you notice any changes in your body after taking a new medication, you should alert your doctor to prevent potential liver damage. Your doctor and pharmacist should always be aware if you are living with (or have recovered from) hepatitis B so they can prescribe proper medications, but if an error occurs, it is important to speak up! 

Ensure you inform your doctor of any vitamins, supplements or herbal remedies you may be taking. Companies making these alternative therapies are not regulated so there may be no testing for quality and purity. You do not know what you’re getting from bottle to bottle or even dose to dose! Some alternative medicines can do more harm than good to your liver. 

You should always be aware of what type of doctor you are talking to as well. Some primary care doctors may be more experienced in chronic hepatitis B management than others. Gastroenterologists and hepatologists are the experts in the liver. It is recommended that individuals living with hepatitis B see a hepatologist but if this is not possible, a knowledgeable primary care doctor should be able to monitor you. If you feel that the doctor you are seeing is not experienced in managing hepatitis B, do not hesitate to ask them to review the official management guidelines with you, or to switch doctors. Your health is valuable and should be treated as such! 

When To See the Doctor Immediately

In some cases, those living with chronic hepatitis B can experience symptoms such as jaundice (yellowing of the skin or eyes), ascites (fluid in the abdomen that gives it a hard, round appearance), or severe vomiting and diarrhea. If any of these symptoms occur, it is extremely important to get to a doctor or healthcare professional as soon as possible. Severe symptoms indicate that immediate blood work is needed to prevent severe liver damage or liver failure. Remember that liver disease and liver cancer are both manageable if diagnosed early and monitored regularly, so it is important to attend regular doctor appointments, keep a clear record of your medical history, and become your own health advocate by empowering yourself with knowledge and getting involved in your care! 

Join Us For a Twitter Chat for Liver Cancer Awareness Month!

 

 

 

 

October is Liver Cancer Awareness Month. Each year in the United States, about 33,000 people get liver cancer and a large portion of liver cancer cases are caused by viral hepatitis. Viral hepatitis is preventable and when diagnosed and linked to care early, can be treated to prevent liver cancer from developing. The majority of people living with hepatitis B and hepatitis C are unaware of their status and often find out after serious damage has occurred. Liver cancer is one of the only cancers that continues to rise steadily each year. On Wednesday, October 23 at 3PM ET representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD will co-host a twitter chat to discuss the link between liver cancer and viral hepatitis as well as the importance of engaging communities most affected, particularly patients, in our response.

A large part of our chat this year is centered upon the patient voice. The patient perspective is essential to our efforts to prevent liver cancer and improving the lives of those affected by it. Jacki Chen, one of the Hepatitis B Foundation’s #justB storytellers and Karen Hoyt, a hepatitis C patient advocate with the National Viral Hepatitis Roundtable,  will be joining this year’s twitter chat as featured guest to share their unique experiences.

Below are the questions to be discussed during the chat. How can you participate? Join the conversation that day and throughout the month with the hashtag #LiverChat19. Share any resources or strategies you have that raise awareness about the link between liver cancer and hepatitis as well as how to better engage communities most affected, particularly patients, in our work. We also encourage you to share any videos or photos you have of your work in your communities or activities during Liver Cancer Awareness Month!

· Q1: What are things everyone should know about liver cancer, and also the link between hepatitis and liver cancer?

· Q2: What can people do to prevent hepatitis, or for those living with hepatitis, what can be done to protect the liver and prevent liver cancer?

· Q3: What are the barriers that keep people from getting screened for hepatitis and liver cancer and how can they be addressed?

· Q4: Why are some communities more vulnerable to hepatitis and liver cancer, and how do we address the disparities?

· Q5: How do we engage communities most affected by hepatitis or liver cancer in our work? Why is this important?

· Q6: What resources are available to educate others about hepatitis B & C and liver cancer? What resources are needed?

· Q7: Who are your key partners in addressing liver cancer? Who would you like to engage more in your work? (Tag them here!)

· Q8: What is one lesson learned or piece of advice for others who want to expand their work on the link between viral hepatitis and liver cancer?

· Q9: Centering the voices of patients and liver cancer survivors is incredibly important in improving our response and ensuring their needs are being met. How do you do this in your work? How can we as a community do this better?

Co-hosts and featured partners of the chat include:

· Hepatitis B Foundation – @hepbfoundation

· NASTAD – @NASTAD

· CDC Division of Viral Hepatitis – @cdchep

· CDCNPIN will be moderating the chat – @cdcnpin

· Jacki Chen – @jacki0362

· Karen Hoyt – @hepatitisIhelpC

· Global Liver Institute- @GlobalLiver

· American Liver Foundation- @liverUSA

Confirmed participants and their handles include:

· National Viral Hepatitis Roundtable- @NVHR1

· Hep B United – @hepbunited

· Hep B United Philadelphia – @hepbunitedphila

· Liver Cancer Connect – @LiverCancerConn

· Hepatitis Delta Connect – @HepDConnect

· Hepatitis Education Project – @HepEduProject

· Minnesota Department of Health – @MNHealth

· Hep Free Hawaii – @HepFreeHawaii

· Hawaii Health – @HIgov_Health

· Hep Free NYC – @HepFreeNYC

· MD Anderson Cancer Center – @MDAndersonNews

· AAPCHO – @HepBPolicy

. HHS Viral Hepatitis – HHS_ViralHep

· Kiiza Alexander – @KiizaAlexander

· Minnesota Health Department – @MNHealth

·HHS Division of Viral Hepatitis – @HHS_ViralHep

·HHS Division of Viral Hepatitis – @HHS_ViralHep

·Rowaye Ridwan – @otunbaridwan

·Hassan Muhammad Bature – @Hasanb1980

·Lilian Mary Nabuya – @Inabunya

·Wenyue Lu – @lu_wenyue

·Dave Nkengeh – @Davy_Tazinkeng

·Hepatitis B Initiative of Washington D.C. – @HBIDC

· Shakur Xassan – @sheykoshee

· Temple University Center for Asian Health- @KnowCancer

· Asian Health Coalition -@CAHE_AHC

·Maryland Cancer Collaborative

Just getting started with Twitter? Do you wish to join the conversation but you don’t know how? Type #LiverChat19 in the search box of the Twitter application to follow the chat, and click on “Latest”. Email michaela.jackson@hepb.org to be added to the list of confirmed participants!

#Tri4ACure: Racing For Hepatitis B Awareness & Cure Research

On September 8th, 2019, Edwin Tan participated in one of the toughest and most exhausting triathlons in the world: the Ironman. The Ironman consists of a 2.4-mile swim, a 112-mile bicycle ride, and a marathon 26.22-mile run raced in that order. It was Edwin’s first time racing in an Ironman, and although it took him over 13 hours – on a cold, rainy day – to finish, he did not give up! 

The completion of the Ironman race marks the end of Edwin’s #Tri4aCure journey, which officially began in June 2019. Since the beginning of the summer, Edwin has competed in 6 races – over 336 miles – to raise money and awareness for hepatitis B research, patient outreach, and education; we are extremely proud of his accomplishments! 

Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota – was diagnosed with hepatitis B in 2014. Like many others, Edwin’s diagnosis came as a surprise. After he learned his hepatitis B status, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. 

Edwin’s decision to compete in an Ironman was driven by his hepatitis B journey. Researching the topic made him aware of the lack of education and extreme stigma surrounding the illness. The Ironman was a testament to the strength, endurance, & determination that those living with hepatitis B display each day.  “The theme of this race for me was perseverance, which I felt was fitting for my hepatitis B story, “ said Edwin. “Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.” 

In addition to being one of the Foundation’s supporters, Edwin is also a #justB storyteller! His video is just as inspirational and motivating as his #Tri4ACure journey. “I’m going to prove what I can achieve even while living with hepatitis B,” said Edwin in reference to competing in an Ironman. 

The Hepatitis B Foundation is thrilled to have been a part of such a positive, encouraging adventure. Although the races may be over, you can still contribute to Edwin’s efforts to raise awareness and funds for a cure for hepatitis B right here

Fighting For Fair Treatment Access: Improved Medication Access In The U.S.

Ensuring that people with hepatitis B have access to affordable medications is one of our top priorities. If you or someone you know is currently prescribed Vemlidy (tenofovir alafenamide), entecavir, or tenofovir, we have important news that could help make your medications more affordable.

Vemlidy will once again be covered under CVS Caremark

The Hepatitis B Foundation, 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 – 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.
Thanks in part to our advocacy, the company announced last week that they will resume coverage of Vemlidy for their plan members as early as October 2019! In addition, Gilead Sciences, the manufacturer of Vemlidy, is offering increased patient assistance for patients until the coverage takes effect.
What’s next: If you or a loved one are taking Vemlidy and have a CVS Caremark prescription plan, the date that coverage will resume depends on your plan type. 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.
To offset the costs, until January 1, 2020, Gilead Sciences 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.
Low-cost options for patients on entecavir and tenofovir
n June 2019, the Hepatitis B Foundation partnered with Rx Outreach , a nonprofit mail order pharmacy, to offer two of the most common hepatitis B medications at low cost to eligible patients.
Eligible individuals can get a 30-day supply of tenofovir for $25 or a entecavir for $45. Eligibility is based upon household income, not on insurance status or prescription drug coverage. 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.
Visit the Rx Outreach website to learn more: https://rxoutreach.org/hepb/

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.

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!

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. 

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 AMNational 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.

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.

#Tri4ACure: Racing For Hepatitis B Awareness, Cure Research, and Health

Edwin Tan learned about his hepatitis B diagnosis in high school after he was banned from donating blood to the Red Cross. Unsure as to why he was not allowed to donate, Edwin asked his doctor about it a few years later. When the routine blood tests came back with irregular results, the doctor ordered an additional test for hepatitis B; the hepatitis B test came back positive.

Despite the shock of the diagnosis, Edwin did not let it hold him back! He researched the infection and discovered the importance of keeping his liver healthy. He took steps to change his diet and incorporate more exercise into his daily routine. Studies show that regular exercise can greatly reduce the risk of liver disease and liver cancer. After a friend invited him to participate in a small triathlon, Edwin decided that triathlons and racing were the perfect ways to have fun while staying healthy!  

Now, Edwin is competing in a series of six races in midwestern America to help raise  money and awareness for hepatitis B research, patient outreach, and education through the Hepatitis B Foundation! You can make a gift to support Edwin’s fundraising efforts here.

“Hepatitis B is something that doesn’t seem to have a whole lot of awareness around it, has stigma associated with it, and doesn’t seem to attract the same attention as a lot of other major diseases out there,” said Edwin. “I believe that the Hepatitis B Foundation is working to tackle all of these issues and focus on finding a cure for it. Because hepatitis B was the reason I started racing and I am interested in increasing awareness, I found it fitting to race for the Hepatitis B Foundation.”

On Saturday, June 15th, Edwin competed in the Minnetonka Triathlon in Minnetonka, Minnesota – his first of six races this summer. In just under an hour and a half he accomplished: swimming more than 100 yards, biking 15 miles, and running 3 miles!

Edwin’s next race will be on Saturday, June 22nd at Grandma’s Marathon in Duluth, Minnesota and we are looking forward to cheering him as he works hard to raise awareness and prove that those living with hepatitis B can achieve their goals

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook, Twitter and Instagram. Be sure to use the hashtag #Tri4ACure!