In addition to facing health issues from a virus that attacks their liver, millions of people living with hepatitis B must deal with additional challenges from stigma and discrimination related to their hep B status. A new report by the World Hepatitis Alliance highlights their lived experiences and sheds light on how stigma and discrimination affect people who have hepatitis B virus. The report also recommends nine policies that health systems can adopt to better help this population.
You can watch a related panel discussion on the report and hep B stigma and discrimination. A video of the webinar is posted at the top of this article; you can also watch it on YouTube.
But first, hepatitis refers to inflammation of the liver, an organ that acts as the body’s filtration system. Untreated, hepatitis can lead to scarring of the liver (cirrhosis), the need for a liver transplant and death. As our Hep Basics Introduction points out, the disease can be caused by numerous factors, including fat, excessive alcohol, autoimmune diseases and viruses, notably Hepatitis A virus (HAV), hepatitis B virus (HBV) and hepatitis C virus (HCV).
Nearly 296 million people worldwide are living with hepatitis B, according to estimates from the World Health Organization included in the report titled “The Impact of Stigma and Discrimination Affecting People With Hepatitis B.” What’s more, nearly 900,000 people die of hep B each year, and the virus is the leading cause of liver cancer. Currently, there is no cure. However, treatments are effective and affordable in most cases, although most people with the virus are unaware of their status.
We cannot wait to take action to address hepatitis B related stigma and discrimination.— World Hepatitis Alliance (@Hep_Alliance) November 15, 2021
Today we release our Stigma Report, highlighting the need for action.
Read the report at https://t.co/RgNLv3haCX #HepatitisCantWait #TLMdX21 #TLMdX#LiverMtg21 pic.twitter.com/kivRdHi3MN
In highlighting the personal stories of several people living with HIV—including videos—the report illustrates how stigma and discrimination affect their lives. This includes experiencing workplace discrimination, being ostracized and judged by loved ones and communities, and receiving inadequate or misleading information from health care specialists. Stigma and discrimination, the report notes, impact a person’s “mental health, quality of life, individual freedoms and human rights.”
“This new report highlights the real need for action to tackle stigma and discrimination," said Cary James, CEO of the World Hepatitis Alliance. “We can’t wait for action; stigma harms people every day and stops people from coming forward for testing and screening services, causing late diagnosis of hepatitis B, leading to liver cirrhosis and liver cancer. Early diagnosis means that effective care and treatment can be made available. Decision-makers must understand the need to address stigma and discrimination as part of efforts to eliminate hepatitis B.”
To support people trying to address these challenges, the report recommends these nine policies that health care systems can adapt:
- Provide accurate and accessible information regarding hepatitis B for those newly diagnosed including transmission, health promotion information, rights and responsibilities, and long-term health plan.
- Ensure all newly diagnosed individuals are linked to appropriate and supportive health care services for ongoing monitoring and management.
- Ensure equitable and affordable access to prevention of mother-to-child transmission (PMTCT) programs for all women.
- Ensure that mental and emotional support is provided to people diagnosed with hepatitis B and their families.
- Require that all health care professionals receive ongoing hepatitis education and are aware of stigma and how to address it.
- Ensure testing for hepatitis B is conducted in the context of health care services, that the results are confidential, that the testing is of direct benefit to the person being tested, and is not required as a condition of employment or education.
- Ensure anti-discrimination laws and policies are correctly implemented and that adequate recourse is given to enable people experiencing discrimination to pursue justice through the legal system.
- Ensure there are legal protections in place for people with hepatitis B, including protection from government sanctioned discrimination.
- Ensure that immigration and visa policies do not limit the freedoms of people living with hepatitis B, because of their diagnosis.