Hep B Blog
Living with Hepatitis B, Relationships

I Have Hepatitis B; Can I Get Married?

At the Hepatitis B Foundation, we answer thousands of calls, social media messages, and emails a year from individuals affected by hepatitis B. One of the most common questions we receive is: If I have hepatitis B, can I still get married? 

To put it simply, yes, a person living with hepatitis B can get married. In fact, a healthy relationship can be a source of love and support for those who may feel alone in their diagnosis.

Transmission of hepatitis B can be prevented in your partner; it’s a vaccine preventable disease! Keep in mind that hep B is common in many parts of the world. When properly tested, people often learn they too are living with chronic hep B or that they have recovered from a past infection. A hepatitis B triple panel blood test (HBsAg, HBcAb total and HBsAb) will let your partner know if they have a current infection, have recovered from a past infection and whether or not they need to be vaccinated.  Future children should also be vaccinated starting as a newborn to help prevent transmission, especially if the mother is hepatitis B surface antigen positive (HBsAg+)!

If your partner is waiting for the vaccine or is unable to be vaccinated for some reason, there are other precautions that one can take to prevent transmission: practice safe sex by using a condom, properly wrap all wounds, clean up any spilled blood with gloves and a fresh solution of 1 part bleach to 9 parts water, and don’t share sharp personal items (razors, toothbrushes, nail clippers, and body jewelry). This list may seem like a lot, but they are mostly things that we do every day without thinking much about it! 

Physically, there are no barriers that prevent an individual living with hepatitis B from getting married. The question often stems from a place of fear that is fueled by the stigma and discrimination around them. Oftentimes, we give fear too much power in our lives. It can control our actions and cause us to isolate ourselves. It’s important to remember that an individual is not their diagnosis. The essence of who you are as a person has not changed! 

Many of our #justB storytellers are leading happily married lives with supportive spouses who help them maintain a healthy lifestyle. Chenda was already engaged when she first discovered that she was living with hepatitis B. She said, “ When my fiance called, I was scared to answer but I told him the truth. He said ‘I love you’ and encouraged me to see a doctor”. Chenda and her husband now have a baby who they made sure was protected from the virus! Another storyteller, Heng, shares how he felt when the woman he was in love with told him that she was living with hepatitis B. After she told him, he got tested and found out he was already protected due to the vaccine! They later married and had children. “We make better lifestyle choices because of her illness, but we don’t let it define our lives”. 

Hepatitis B is not a weakness. Each day, millions of people living with chronic hepatitis B make the choice to wake up and live life to the fullest. Like many others, Edwin – one of our new #just B storytellers – was surprised by his diagnosis. Instead of letting it hold him back, he decided to show the world how strong he was by competing in a series of rigorous athletic competitions to set an example for others like him. “I want to show that Hepatitis B is not a condition that debilitates someone,” said Edwin.  “We can triumph through adversity.” 

Our #justB storytellers are examples of hope, inspiration, and strength; they are people living their truths.They also remind us that the difficulties that we face in life can make us stronger as a person. Despite the fear that Bright felt, he persevered and took action. “Slowly I started to have days when I wasn’t hopeless, when I could face the unknown. I talked to my doctors, did my own research, and made my own decisions….Now I realize I have changed: I am more resilient than ever before.”

HDV, Hepatitis Delta (HDV)

Hepatitis B and Delta Coinfection: A Public Health Crisis in Mongolia

 

Mongolia is one of the world’s most sparsely populated countries yet is home to the highest infection rates of hepatitis B and delta coinfection worldwide1. The World Health Organization (WHO) estimates that about 5-10% of the nearly 300 million global hepatitis B patients are co-infected with hepatitis delta. Hepatitis delta is the most severe form of viral hepatitis, and greatly increases the risk of cirrhosis, scarring of the liver, and liver cancer; with seven out of 10 patients progressing within 10 years 4. In Mongolia, 70% of hepatitis B patients are coinfected with hepatitis delta, and the country is known for having the highest rates of liver cancer on the planet2,3. These statistics are startling and highlight a public health crisis for Mongolia, where most families have at least one family member affected 2.

How are people getting infected?

Historically, healthcare-related exposures are suspected to be the biggest risk for contracting hepatitis in Mongolia. Despite the 1993 national policy was set to regulate the multi-use of single-use syringes in healthcare settings, effective sterilization practices, and medical staff training, proper inspections remain an ongoing issue. Healthcare workers themselves are also at risk, with requirements for hepatitis B vaccination set by the Ministry of Health recently in 20145. Although routine infant vaccination for hepatitis B began in 19916, older populations remain at risk or are susceptible to exposures.

Treatment Access

For a nation so widely affected by liver disease, as of 2015, skilled physicians and liver transplant experts are sparse – with only one reported team performing transplants in Ulaanbaatar, the capital city1. Fibroscan, CT scans, and liver biopsies; routine screening tools for liver disease and liver cancer, have only been introduced in recent years, and are still not routinely used for liver cancer screening as recommended by WHO7. This lack of surveillance leaves most patients to endure late diagnoses. Due to the rural landscape, where nearly 30% of the population lives below the poverty line10 and historically nomadic lifestyle accessing care is a challenge. Access to treatment for hepatitis B is additionally a challenge, and traditional medicines might be utilized. Pegylated interferon, the only current and somewhat effective treatment for hepatitis B and delta coinfection, was registered about 10 years ago in Mongolia and is still not covered by its national healthcare system, making it too expensive for most low and middle-income families8. With the help of partnerships, the government has integrated funding for palliative care for liver cancer patients, with most facilities centralized around the capital city7. With a failing insurance system and little government prioritization for prevention and treatment, many are calling on the World Health Organization (WHO), pharmaceutical companies and NGOs to step in to curb the crisis9.

Hope

Mongolia’s crisis has not been left unaddressed. Over the last 10 years, Mongolia’s government has prioritized combatting hepatitis, developing its first viral hepatitis national strategy in 2010, and focusing on prevention, affordable treatment, and public awareness programs. Admirably, coverage under the national insurance plan for antivirals began in 2016, greatly subsidizing the cost of hepatitis B treatment11. These efforts did not go unnoticed, and in 2018, WHO praised Mongolia’s efforts in moving towards the elimination of hepatitis B and C, recognizing its successes in its national program, “Whole-Liver Mongolia”. Another program, “Hepatitis Free Mongolia”, an initiative of the Flagstaff International Relief Effort (FIRE), Flagstaff Rotary Club, Rotary Club of Ulaanbaatar and the WHO, offers free hepatitis education, screening, vaccination and care for those infected. The project also trains healthcare providers and offers free exams, diagnostic services and patient counseling; a vital service for many who may not be able to access or afford these services otherwise. Since 2011, the project, along with FIRE’s Love the Liver program have tested nearly 9,000 people for hepatitis B, screened 6,000 for liver cancer and performed over 3,000 specialist exams, and, in a country of only 3 million people, has made a meaningful impact. The effort is also unofficially supported by Mongolia’s Ministry of Health, who is continually investing in efforts to curb the burden of hepatitis.

References:

1. “Viral Hepatitis in Mongolia: Situation and Response.” World Health Organization, 2015, iris.wpro.who.int/bitstream/handle/10665.1/13069/9789290617396_eng.pdf.

2. “Hepatitis: A Crisis in Mongolia.” World Health Organization, 2017, www.who.int/westernpacific/news/feature-stories/detail/hepatitis-a-crisis-in-mongolia.

3. Rizzetto, Mario. (2016). The adventure of delta. Liver International. 36. 135-140. 10.1111/liv.13018.

4. Abbas, Z., Abbas, M., Abbas, S., & Shazi, L. (2015). Hepatitis D and hepatocellular carcinoma. World journal of hepatology, 7(5), 777–786.

5. Baatarkhuu, Oidov & Uugantsetseg, G & Munkh-Orshikh, D & Naranzul, N & Badamjav, S & Tserendagva, Dalkh & Amarsanaa, J & Young, Kim. (2017). Viral Hepatitis and Liver Diseases in Mongolia. Euroasian Journal of Hepato-Gastroenterology. 7. 68-72. 10.5005/jp-journals-10018-1215.

6. Davaalkham, Dambadarjaa & Ojima, Toshiyuki & Uehara, Ritei & Watanabe, Makoto & Oki, Izumi & Wiersma, Steven & Nymadawa, Pagbajab & Nakamura, Yosikazu. (2007). Impact of the Universal Hepatitis B Immunization Program in Mongolia: Achievements and Challenges. Journal of epidemiology / Japan Epidemiological Association. 17. 69-75. 10.2188/jea.17.69.

7. Alcorn, Ted. (2011). Mongolia’s struggle with liver cancer. Lancet. 377. 1139-40. 10.1016/S0140-6736(11)60448-0.

8. “Country Programme on Viral Hepatitis Prevention and Control.” World Health Organization, Western Pacific Region, 2015, www.wpro.who.int/mongolia/mediacentre/releases/20160318_viral_hep_prevention_control/en/.

9. Jazag, A., Puntsagdulam, N., & Chinburen, J. (2012). Status quo of chronic liver diseases, including hepatocellular carcinoma, in Mongolia. The Korean journal of internal medicine, 27(2), 121–127. 10. “Poverty in Mongolia.” Asian Development Bank, 2019, www.adb.org/countries/mongolia/poverty.

11. National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on a National Strategy for the Elimination of Hepatitis B and C; Strom BL, Buckley GJ, editors. A National Strategy for the Elimination of Hepatitis B and C: Phase Two Report. Washington (DC): National Academies Press (US); 2017 Mar 28. 1, Introduction. Available from: https://www.ncbi.nlm.nih.gov/books/NBK442230

 

Liver, Liver Cancer, Liver Health, Living with Hepatitis B

Protecting Yourself From Liver Cancer While Living with Hepatitis B

This Liver Cancer Awareness Month, we are connecting the dots between hepatitis B and liver cancer. Hepatitis B is responsible for up to 60% of all liver cancer cases worldwide. In fact, some of the highest rates of liver cancer are found in places with extremely high rates of hepatitis B, such as sub-Saharan Africa and Southeast Asia. Although liver cancer is the sixth most common cancer in the world, it is the second most common cause of cancer deaths. Liver cancer prevention should be a priority for all living with hepatitis B. Luckily, there are steps that you can take to prevent liver cancer – whether you are living with hepatitis B or not! 

The Importance of Regular Check-Ups

Did you know that a chronic hepatitis B infection can lead to liver cancer without signs of previous damage such as cirrhosis?  Many people do not realize that chronic hepatitis B is the primary global risk factor for developing liver cancer. Cirrhosis – or scarring or the liver – is often a risk factor for liver cancer, but it is not always the case for those living with hepatitis B. This is one of the reasons why it is so important for family members and sexual partners of infected individuals to get tested as well! Lack of symptoms does not mean that damage is not occurring. 

Visiting a doctor regularly is the best way to prevent liver cancer if you are living with hepatitis B. The standard recommendation for visiting your doctor is every six months however this can vary based upon the severity of your infection. The doctor will take a few blood tests, along with an ultrasound examination of the abdominal area to determine the health of the liver. Based upon these tests and other risk factors, the doctor will be able to determine if liver damage is occurring and can guide you on which steps you should take next. 

If damage is detected early enough, progression to liver cancer can be prevented through highly effective treatments that stop or slow the virus from reproducing in your liver. However, it is important to note that not everyone living with hepatitis B needs treatment. Current treatments have been proven to be most effective when there are signs of active liver damage. Hepatitis B can be managed through regular monitoring by a knowledgeable doctor and lifestyle changes that can go a long way in protecting your body. 

Early detection of liver cancer is extremely important. The average 5-year survival rate once diagnosed with liver cancer ranges from 10% -14%. However, with early detection and proper treatment, those numbers rise to over 50%! This significant difference is because if liver cancer is caught early, a doctor can link you to life-saving treatments including chemotherapy, surgical options, ablation techniques, intra-arterial therapies or a liver transplant. Regular monitoring by a knowledgeable doctor will hopefully identify the markers of liver cancer before it occurs, but if you are living with liver cancer, there are treatment options and resources available to you. 

Preventing Liver Cancer 

Educating oneself is the first step in prevention! If you have hepatitis B, be aware of the risk factors and behaviors that can increase your likelihood of liver damage and liver cancer, such as consuming alcohol and high amounts of junk food, and lack of exercise. Non-Alcoholic Fatty Liver Disease (NAFLD) can also increase your risk of cancer, so it is important to discuss NAFLD risk factors and prevention tips with your doctor. Groups such as the CDC Division of Viral Hepatitis and the American Association for the Study of Liver Diseases all provide free fact sheets, call lines, and literature by experts that can help you understand what may be occurring in your body and to make educated choices. You can also check out our Liver Cancer Connect resource for more information or for liver cancer support. 

The hepatitis B vaccine is also the first anti-cancer vaccine ever created! Remember that the vaccine is typically given in a set of 3 doses. It is extremely important to take all three in order to receive lifelong protection from hepatitis B-related liver cancer. In the U.S., there is also a 2-dose vaccine available, so you can be fully protected with fewer doses! If you are worried about the cost of the birth dose for your infant or the vaccine for yourself, many countries have free health clinics that can administer it or link you to an organization that can help. 

Another key to preventing liver cancer is to get tested for hepatitis B. If you have not received your vaccine and you think you fall into a high-risk group, talk to your doctor about getting tested. Because hepatitis B often has no symptoms, it is important to get screened even if you do not feel ill. An early diagnosis means that you can begin any needed treatment sooner and prevent irreversible damage from occurring. Like the vaccines, your local doctor or health clinic may be able to test you for free or reduced cost – just ask! Some local community groups also provide free hepatitis B testing, so be sure to look out for flyers and announcements about them in your community as well

Hepatitis B Advocacy, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

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!

Hepatitis B Prevention, Living with Hepatitis B

RANN Foundation – Raising Hepatitis B Awareness in India

This post is written by guest blogger Surender, who founded the RANN Foundation – a non-profit organization in India dedicated to educating women and children in a variety of topics – including hepatitis! 

India has one-fifth of the world’s population and carries a large proportion of the global burden of hepatitis B. India harbors 10 to 15 percent of the entire pool of hepatitis B carriers in the world, estimated to be 40 million HBV carriers. About 15 to 25 percent of HBsAg [the hepatitis B surface antigen] carriers are likely to suffer from cirrhosis and liver cancer and may die prematurely. Infections that occur during infancy and childhood have the greatest risk of becoming chronic. Of the 26 million infants born every year in India, approximately one million run the lifetime risk of developing chronic hepatitis B.

RANN Foundation focuses on developing the potential of women and girls to drive long-lasting equitable changes deeply focusing on SDGs mainly 3.3 aims to combat Viral Hepatitis by 2030.

We believe that the best way to unlock human potential is through the power of creative collaboration. That’s why we build partnerships between businesses, NGOs, governments, and individuals everywhere to work faster, leaner, and better; to find solutions that last; and to transform lives and communities from what they are today to what they can be, tomorrow.

My Story:

I was a Human Resource Executive in leading thermal power generation company in India. It was 2010 when during a blood donation camp, I got to know that I have Hepatitis B infection. I had never heard about hepatitis b before this incident. It was a shocking moment for me because I had never gone through any blood transfusion. I discussed with family and prepared all of them for screening of hepatitis B. The results were shocking to all of us as three members had infection of Hepatitis B in my family. It was mother to child transmission. I decided to leave my job, which was the only source of earning for me/family, & started education about the diseases in most vulnerable slums & villages in India. Being a survivor, it was my duty to protect future generations. I started my organization RANN Foundation which aims for awareness and prevention of viral hepatitis in India.

The social stigma surrounding Hepatitis B

I never hide my hepatitis B positive status. In fact, on every occasion, I share my story, but anyone who is living with hepatitis B cannot reveal his/her status due to discrimination in family & society. Discrimination and marginalization of people living with the chronic infection is a major concern that majorly impacts the lives of patients in India. Misconceptions and stigma attached to the disease often leads to marginalization and discrimination against patients. My fight against the disease focuses on multiple fronts – prevention of hepatitis B through vaccination camps of dropout children, conducting education programs on viral hepatitis in schools & urban slums, and providing psychosocial support to patients. Around 1.5 lakh deaths annually and almost 60 million Indians affected, Viral Hepatitis continues to be a serious public health concern. Most of the mortality due to viral hepatitis is attributed to hepatitis B and C, which are also known as silent killers as more than 80% of the infected aren’t aware of their infection.

Project NOhepDelhi: A School Awareness Program

Under Project NOhep Delhi a school awareness program is initiated by RANN Foundation in collaboration with Delhi Commission for Protection of Child Rights (Govt of Delhi) to educate students and teachers about viral hepatitis. The role of students in creating awareness and causing behavioral changes among the general population could go a long way in preventing the spread of viral Hepatitis.

The effort aimed at increasing students’ awareness and knowledge of hepatitis transmission and prevention should, therefore, be of special interest, especially among adolescents and young adults.

At this stage, most detrimental lifelong lifestyles and behaviors are adopted like substance use, alcoholism, etc. which are also a predisposing factor for the contraction of hepatitis infection and other infections. The school is a place where viral hepatitis information can get to adolescents and the teachers are potent instruments for giving out this information. Hence, the need to assess the knowledge of teachers & students about viral hepatitis.

Training of the Students: Senior girls are in the process of taking sessions on viral hepatitis to educate their juniors and other people living nearby their home. Girls were excited while giving their names for the training and showed dedication throughout the program.

Achievements

Project HASI:- RANN in collaboration with Cognizance (IIT- Roorkee) has taken the initiative to educate and empower the rural and urban-rural women of Uttarakhand. We launched the project in October 2018. So far, we have impacted and supported over 4,000 beneficiaries directly and over 1500 indirectly through our community trainers in Haryana & Uttarakhand.

NOhep With Max India Foundation :- We have successfully conducted immunization camps with Max India Foundation catering to 800 children and have provided with hepatitis B vaccinations.

Project NOhep Delhi :- RANN in collaboration with Delhi Commission for Protection of Child Rights (Govt. of Delhi) has taken the initiative to educate and empower the urban slums women & students of govt schools of New Delhi. We have started project Nohep Delhi in 17 govt schools – appox 35 thousand children) & 3 major slums to conduct awareness program on viral hepatitis. An intensive campaign for awareness generation will be held using different methodS such as health awareness camp, meeting, events, street plays, one to one communication, big events and sensitization with various groups of the society

Hepatitis B Advocacy, Living with Hepatitis B

#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. 

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

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/

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!

Baruch S. Blumberg Institute