In 2019, the hepatitis B community successfully advocated for the introduction of U.S. House and Senate resolutions to designate April 30th as National Adult Hepatitis B Vaccination Awareness Day for the first time!
Why is Awareness about Adult Hep B Vaccination Needed?
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. Just 25% of all U.S.adults have completed their vaccine series. Without completing the series, individuals are still vulnerable to potential exposures; one dose of the vaccine is not enough. Coupled with the recent increasein injection drug use, low vaccination rates among adults have been driving arise in acute hepatitis B casesacross the nation. The new cases that are linked to injection drug use are particularly prevalent among adults aged 30 to 49. Unfortunately, newly infected women may be unaware of their status and may pass the virus on to their infants during birth, putting them at significantly higher risk of chronic infection and liver cancer.
Immunization rates remain low among vulnerable populations including those living with other chronic conditions such as hepatitis C, HIV, kidney disease, or diabetes. In fact, just 12% of diabetic adults 60 years old or older are fully vaccinated, and 26% of diabetic adults ages 19-59 have received the complete vaccine series. Healthcare workers are an under-vaccinated vulnerable population as well. According to the Centers for Disease Control and Prevention, just 60% of healthcare personnel have completed their vaccine series.
National Adult Hepatitis B Vaccine Awareness Day Resolution
This resolution is an opportunity to raise awareness about the importance of the hepatitis B vaccine for providers and community members, as well as providing support for testing, vaccination, and linkage to care for individuals. In addition, the resolution helps encourage a commitment to increasing hepatitis B vaccination rates for adults while maintaining high childhood vaccination rates.
Raising awareness about adult hepatitis B vaccination is a small, but essential step in the journey towards the elimination of hepatitis B. With national support and resources, the U.S. can protect vulnerable communities from serious liver damage and even liver cancer.
You can show your support for National Adult Hepatitis B Vaccine Day by using the hashtag #AdultHepBVaxDay on April 30th and when discussing the hepatitis B vaccine on social media! Graphics are also available to share throughout your networks.
Please see the below links to access additional resources on adult hepatitis B vaccination:
In January of 2020, the Centers for Medicare and Medicaid Services (CMS) proposed a new rule that could increase the out-of-pocket costs for people who take prescription medication for hepatitis B in the U.S. The proposed rule states that health insurance companies would be able to collect patient coinsurance through pharmaceutical manufacturer financial assistance. However, the insurance companies will be allowed to disregard any coinsurance paid with copay assistance when calculating how much the patient has paid toward their deductible and annual out-of-pocket (OOP) limit.
This proposal – titled 2021 Notice of Benefit and Payment Parameters – reverses a recent ruling that would have required health insurance companies to count the value of manufacturer copay assistance toward an enrollee’s annual deductible and OOP limit in most circumstances1. This rule acknowledged that manufacturer copay assistance helps lessen the financial burden of medications for patients. In the US, prescription drugs can be extremely costly, making manufacturer’s copay assistance programs necessary for many patients. For example, brand name treatments are often expensive in order to help pharmaceutical companies earn back the costs of the research and time spent making the medication. Sometimes, the brand name treatments are the only ones that are available, like Vemlidy, or the only version that a person can take. A reversal of the rule would mean that hepatitis B patients and those living with other chronic illnesses may have to pay a larger amount of out-of-pocket costs for their medications.
To understand the significance of this change, we first need to understand what a copay accumulator is.
What is a Copay Accumulator Program and How Does It Work?
A copay accumulator – or accumulator adjustment program – is a strategy used by insurance companies and Pharmacy BenefitsManagers (PBMs) that stop manufacturer copay assistance coupons from counting towards two things: 1) the deductible and 2) the maximum out-of-pocket spending. What does this mean?
Previously, a person could receive financial assistance from companies that make a drug, and that would count towards their deductible and/or out-of-pocket costs, depending upon the insurance plan. Pharmaceutical companies often provide financial assistance (such as a co-pay card) to help underinsured individuals afford expensive medications. This means that the person paying for the drug would end up saving money, often thousands of dollars.
Why Is This an Issue?
As the AIDS Institute explains it, “ … the trend in health insurance benefit design is to shift more of the cost of health care to patients through high deductibles and coinsurance rates …In order to afford the medicine they need, patients increasingly rely on manufacturer copay assistance.” With copay accumulators, the individuals who need assistance the most will be unable to receive it, and will end up paying more for their treatments.
As shown in the above image, with a copay accumulator program – meaning her manufacturer’s assistance is no longer counted toward her out-of-pocket limit- the consumer ends up paying more, while the insurance company is able to reduce the amount they are paying.
Copay accumulator programs are making life-saving treatments increasingly inaccessible. Research shows that the more out-of-pocket costs a person has to pay, the more likely they are to abandon their medication. Once on a hepatitis B medication, stopping suddenly or only taking it once in a while can cause flares and lead to an even higher risk of liver damage.
In the United States, many of those who are living with hepatitis B come from underserved populations with limited access to healthcare. Oftentimes, cultural differences and language barriers can make it difficult to access and utilize the services they need. Now, copay accumulators are making the navigation process even more complex and placing a higher cost burden on patients.
1The rule required insurance companies to count manufacturer copay assistance toward a patient’s deductible and OOP limit for all brand name drugs for which there is no generic alternative and in cases where the patient gained access to the brand name drug through an insurance plan’s appeals or exceptions process.
Nigeria, with an estimated population of 190 million people, has a Hepatitis B prevalence of 8.1% and Hepatitis C at 1.1%, based on a recent Nigeria HIV/AIDS Indicator and Impact Survey(NAIIS) report. The NAIIS survey was a National house-hold based Survey that assessed the prevalence of HIV and related health indicators including the national prevalence of two additional blood-borne viruses: Hepatitis B virus and Hepatitis C virus. This gives an estimated number of about 19 million Nigerians living with Hepatitis B and or C.
The large population and relatively high prevalence rates of hepatitis B and hepatitis C, suggest that Nigeria should be considered a key country for hepatitis elimination efforts. Nigeria’s population was estimated at over 190 million in 2017, and growing rapidly, with projections suggesting it will surpass the United States to become the third most populous country in the world by 2050
The Journey to Hepatitis Elimination in Nigeria
In 2018, Patient groups and members of the World Hepatitis Alliance under the umbrella of the Civil Society Network on viral hepatitis in Nigeria partnered with the Federal Ministry of Health, and World Health Organization (WHO) to organize the 1st Nigeria
Hepatitis Summit in Abuja, FCT. The meeting was the flagship event in the country that brought together 26 states Ministry of health officials, academia, and civil society groups to engage on ways to accelerate hepatitis elimination in the country. The event was supported by Gilead Sciences and Roche Products Limited, with technical support from Clinton Health Access Initiative.
In May 2019 as a follow up to the Summit, the National Viral Hepatitis Control Program, convened the first Review meeting of all Hepatitis Desk officers across Nigeria in Abuja, with the active participation of the civil society groups in the event. The meeting was organized to review the Hepatitis Treatment facilities directory and share best practices among key actors.
In response to high prevalence rates and in alignment with the global effort towards elimination, The Nigerian Ministry of Health developed the National Viral Hepatitis Strategic Plan 2016 to 2020, which maps out actions to put Nigeria on the path of hepatitis elimination. National guidelines for the prevention, care and treatment of viral hepatitis B and C were also developed and published in 2016, which centre on firmly establishing the management of viral hepatitis as part of universal health coverage. Although there is a paucity of data on modes of viral hepatitis transmission within Nigeria, local intelligence suggests that there are some modes of transmission that are particularly relevant, including mother-to-child transmission, healthcare related transmission due to poor infection control and traditional cultural practices, including scarification, female genital mutilation, male circumcision, and uvulectomy.
However, whilst this political will and strategic direction are promising, there remain substantial challenges to the realisation of these plans and the attainment of elimination goals in Nigeria.
Although there have been efforts to work towards universal health coverage in Nigeria, the health system has limited funding, and there is a need for coordination between the levels of government.
Challenges to accessing health care in Nigeria
Although guidelines and strategic direction have been developed to guide Nigeria’s response to viral hepatitis, important barriers remain in place, which must be surmounted to reach elimination targets. These include geographical and financial barriers to accessing testing and treatment and the availability of alternative tests and treatment providers that lack connection with the health system and efficacy for treatment outcomes.
Service barriers to hepatitis care
The allocation of health care resources, including the health care workforce, in Nigeria, is skewed towards secondary and tertiary services, which are predominantly situated in urban areas. Currently, the majority of hepatitis treatment in Nigeria is provided at tertiary level services, which are not easily accessible to large parts of the population.
Financial barriers to hepatitis care
For Nigerians that are able to access health care services, significant financial barriers remain to access testing and treatment for hepatitis. Despite an effort to develop a system of universal health coverage, the majority (approximately 70%) of health spending for health in Nigeria still comes from private expenditure. The majority
of this is out-of-pocket spending, with only a small minority of Nigerians (approximately 4-5%) covered by health insurance. Costs of testing and treatment pose significant barriers to accessing viral hepatitis care, as tests, treatments, and vaccines must be paid for privately, and there is often limited availability of supplies.
This barrier of cost in accessing the hepatitis continuum of care is the primary drive towards quackery and unethical practices perpetrated by some organizations and individuals in Nigeria, providing alternative herbal and relatively cheaper treatment options to vulnerable and gullible patients.
The l ack of social and financial risk protection for Nigerians in accessing hepatitis continuum of care leads to high levels of poverty, vulnerability, and inequality in health
Elimination efforts in Nigeria
Clinton Health Access Initiative (CHAI) to date is leading in providing access to affordable treatment for Hepatitis C patients in Lafiya, Nasarawa state, through its partnership with the
government. The program provides affordable HCV RNA @ $35 and generic DAAs/month @ $80/month. CHAI through its access program has succeeded in negotiating costs of HCV diagnostics in some health centres across Nigeria, such as Lagos, Abuja, and Kwara, where patients can access affordable HCV RNA tests.
Similarly, Taraba State Government in partnership with Roche Products is providing a Pegasys based HBV treatment program for Tarabans. The Yakubu Gowon Centre in partnership with Taraba state government is also providing affordable diagnostics and treatment on HCV for patients at its treatment locations in Takum local council of Taraba state. The centre recently donated some doses of DAAs for patients.
Birth-dose HBV vaccination: Nigeria has a coverage rate of about 51% birth-dose HBV vaccination rate in the country. Sadly, there are no HBV vaccination programs for at-risk populations such as Men who Have Sex With Men, health care workers, People Who Inject Drugs, Incarcerated Populations. There are no government-funded harm reduction projects for People Who Inject Drugs in Nigeria.
Over 80% of activities of civil society and patient groups in Nigeria are on-demand creation, awareness and testing and linkage to care for patients. In June 2019, Centre for Initiative and Development (CFID) and other civil society organizations in Nigeria received a donation of 120 doses of DAAs at the African Hepatitis Summit in Kampala, Uganda through the African Regional Board Member.
Nigeria and the 2030 target
Unless something drastic is done, Nigeria and most of Africa stands the risk of missing the SDGs Goal 3.3 and the WHO Global Health Sector Strategy on Viral Hepatitis Elimination target for 2030.
Nigeria, with its vast mineral, natural resources, and human capital, has what it takes to eliminate viral hepatitis by 2030. But what it lacks is the strong political will and financial commitment by governments at all levels to finance an elimination strategy!
1st Nigeria Hepatitis Summit Report, 2019
World Hepatitis Summit 2015. New data shows relentless rise in hepatitis deaths.
World Health Organization (WHO). Global Hepatitis Report 2017. Geneva: WHO, 2017.
WHO, 2016.WHO Global Health Sector Strategy for the Elimination of Viral Hepatitis: 2016-2030
World Health Organization (WHO). Global Hepatitis Report 2017. Geneva: WHO, 2017:Availableat:apps.who.int/iris/bitstream/handle/10665/255016/9789241565455-eng.pdf;jsessionid=9DECA1FF83BC4A8CAE3BE2649662?sequence=1
Centers for Disease C, Prevention. Progress in hepatitis B prevention through universal infant vaccination – China, 1997–2006. Morbidity and Mortality Weekly Report, 2007;56(18): 441–445
With a new year right around the corner, now is a great time to reflect upon the past year and plan for the one ahead! 2020 is the start of a new era, but it also means that we have just 10 more years left to reach the World Health Organization’s 2030 goal of eliminating viral hepatitis. Many strides have been made over the years. In order to truly work towards elimination, we need everyone’s help – including yours!
Take Care of Your Health: The hepatitis B virus and your liver health can change over time, making regular doctors’ appointments essential to staying healthy and preventing liver disease and possibly liver cancer. Take a few hours this January to sit down and schedule your healthcare appointments for the year. Following up with your healthcare provider will allow them to monitor the infection, identify any signs of liver damage, and prescribe treatment early, if needed, to prevent further damage.
If you were diagnosed with acute hepatitis B and recovered, there are steps you can take to take care of your health too! You – and your healthcare providers – should be aware of the risk of reactivation, and how to prevent it. Always read the warning labels on over-the-counter medications, and make sure that anyone prescribing medication to you is aware of your past infection.
Get involved: Researchers are working hard each day to find a cure for hepatitis B and while they do so, there are many other issues in the hepatitis B community that can be addressed with the help of people like you! If you are in the United States, you can join ouradvocacy network to be notified of opportunities to take action. If you are located in another country, get involved with the #NOhep campaign, or search for World Hepatitis Alliance members near you to see what activities you can take part in. It’s essential for us to work both within our own country and globally. When we work together, our voices will be heard!
Get tested – or encourage others to: Despite being the most common liver disease in the world, just 10% of those infected are aware that they are living with hepatitis B. It is very important that people with hepatitis B are tested – especially because hepatitis B does not have any symptoms. Start small by encouraging your family members and loved ones to get tested or offering to go with a friend to their doctor’s appointment. If you want to help on a larger scale, you can volunteer with local health organizations who are active in the hepatitis community.
Perhaps your friends and family have already been tested and found out that they are not – and have never been – infected. That’s great! Now, it’s time to make sure that they get vaccinated to protect themselves. Remind them to schedule an appointment to receive their vaccine, and check in on them to make sure that they receive all necessary doses. Increasing global vaccination rates – especially in high-risk communities – is essential to meeting the 2030 elimination goals.
Put Your Social Media to Good Use: Technology is one of the best and most powerful communication tools that we have. Consider spreading positive, accurate messaging about hepatitis B in the new year to help destigmatize the disease, raise awareness, and combat false information. Start simple by liking, retweeting, and sharing posts by groups that are working hard to educate others! Be sure to follow reputable organizations so that the information you are receiving and passing on is correct! Join the Hepatitis B Foundation community on Facebook,Twitter, and Instagram for international updates and Hep B United on Facebook, Twitter, and Instagram for hepatitis B information in the United States!
For those of you who may be struggling to cope with your diagnosis or are dealing with stigma and discrimination around your diagnosis, the suggestions above may not be for you. Instead, consider taking 2020 to empower yourself by learning more about hepatitis B and sharing your experiences, even if you are only comfortable sharing anonymously. Remember, you are not alone! Over 292 million individuals are living with hepatitis B and each person has a story to tell.
The only way to fight stigma and discrimination is to make it known that it is unacceptable. Many of our #justB storytellers have faced the same obstacles that others are currently going through. Take some time in 2020 to watch some of our #justB storytelling videos that share the journeys of brave men and women who have found the strength to speak about their diagnosis and how hepatitis B has impacted their lives or family. Other global storytelling campaigns, such as the World Hepatitis Alliance’s #StigmaStops Campaign, or online support groups can provide support, too. However you decide to contribute to eliminating hepatitis B, your efforts will be appreciated!
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 alist 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 Studyof 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!
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 firstname.lastname@example.org to be added to the list of confirmed participants!
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.
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 fora 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.
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:
Inaugural city-wide events in Houston, Texas; Boston, Massachusetts; Washington D.C.; Maryland; Seattle, Washington; New York; Ohio and Philadelphia.
A national petitionwas created and 40% of the petitioners are from or live in Massachusetts; 60% of signers are from 33 other states across the US
Social Media efforts reached more than 500,000 individuals
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)
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
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 AfricanImmigrant 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.
Contact Chioma, Director of the Multicultural AIDS Coalition, at email@example.com to get involved in advocacy for NAIRHHA Day
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.
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.
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.
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.
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.
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.
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.