Hep B Blog

Monthly Archives: September 2019

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.

Baruch S. Blumberg Institute