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Janssen Announces New World Hepatitis Alliance Report Calling for Change in the Fight Against Stigma and Discrimination Faced by More Than 90 Percent of People Living with Hepatitis B
Mon, November 15, 2021, 11:30 PM·8 min read
"The Impact of Stigma and Discrimination Affecting People with Hepatitis B" report highlights effects on basic human rights to work, study and travel
SAN DIEGO, Nov. 15, 2021 /PRNewswire/ -- The Janssen Pharmaceutical Companies of Johnson & Johnson (Janssen) today announced the launch of a new report from the World Hepatitis Alliance (WHA) titled "The Impact of Stigma and Discrimination Affecting People with Hepatitis B." The report, sponsored by Janssen, reveals that 93 percent of people living with hepatitis B face stigma1 and highlights how systemic discrimination impacts their mental health, quality of life, individual freedoms and human rights. The report calls for urgent policy reform to address the ongoing stigma and discrimination faced by the global hepatitis B community.
Janssen Pharmaceutical Companies of Johnson & Johnson logo (PRNewsfoto/Janssen Pharmaceutical Companie)
Janssen Pharmaceutical Companies of Johnson & Johnson logo (PRNewsfoto/Janssen Pharmaceutical Companie)
"There are nearly 300 million people living with hepatitis B, and most face daily stigma and discrimination. This must change," said James Merson, Ph.D., Global Therapeutic Area Head, Infectious Diseases, Janssen Research & Development, LLC. "The new report from the World Hepatitis Alliance is a stark reminder of the health inequities faced in our modern society. At Janssen, we stand by the hepatitis B community through our relentless pursuit of a functional cure* for this disease and advocate for improved quality of life for those affected."
"Systemic discrimination continues to threaten the livelihood of people living with hepatitis B around the world," said Cary James, Chief Executive Officer, World Hepatitis Alliance. "Our 2021 Stigma Report sheds light on the realities and challenges individuals face each day living with the condition. It's imperative that communities, civil society and policymakers take action now to discourage and end stigma and discrimination against those living with hepatitis B."
The report calls for urgent policy reform across eight key areas:
Health systems must provide accurate, accessible information and timely services to people newly diagnosed with chronic hepatitis B, including linking them to appropriate peer support. A lack of information and support puts those newly diagnosed with chronic hepatitis B under significant stress and leaves them unprepared to deal with the burden of a lifelong condition.
Access to care must be equitable and affordable, particularly care to prevent mother-to-child viral transmission worldwide. Despite available and affordable interventions to prevent mother-to-child transmission, 43 percent of births happen without access to hepatitis B prevention services.
Mental health support must be prioritized for people living with hepatitis B. Current evidence demonstrates individuals living with hepatitis B suffer from significantly higher rates of depression and anxiety, which can lead to self-harm and even suicide.
Ongoing hepatitis education must be prioritized for all healthcare professionals. There have been no hepatitis B transmissions recorded by a hepatitis B positive healthcare provider in the United States (U.S.) since 1994. However, it wasn't until 2012 that U.S. Centers for Disease Control and Prevention (CDC) guidelines were updated to state that a positive hepatitis B status should not disqualify anyone from studying or practicing medicine. Ongoing education is needed to achieve a system in which someone living with hepatitis B can enter a healthcare system and be met with compassion instead of fear.
Viral hepatitis testing must remain confidential and should not be a requirement for employment. A systematic literature review of hepatitis B stigma research found that up to 30 percent of people living with the condition report workplace discrimination due to their hepatitis status. Policies that support confidentiality are key to ensuring individuals living with hepatitis B are not penalized by employers because of their medical status.
Anti-discrimination laws must be established, enforced and fit for purpose, with adequate recourse given to people experiencing discrimination to enable the pursuit of justice through the legal system. Individuals living with hepatitis B face daily discrimination and dismissal. This is a violation of an individual's human rights, and the legal system must include sufficient avenues to protect those with hepatitis B from discrimination.
Immigration policies must not limit the freedoms of people living with hepatitis B because of their status. Discriminatory immigration policies exist around the world, and in many countries, workers are required to test negative for hepatitis B to obtain a work or residence visa. Screening processes can also include compulsory annual re-testing as a condition for visa renewal.
Funding for hepatitis B programs must be increased, focusing on research to reduce stigma and improve equity in society. Compared with other infectious diseases, hepatitis B has one of the lowest research budgets. Progress is being made toward a functional cure* for chronic hepatitis B, but higher levels of investment are required to make this an equitable and affordable reality to everyone who could benefit from it.
The report quotes a patient advocate living with hepatitis B: "I lost my opportunity to study abroad because of my status. A friend of mine lost the chance to have a life partner because she was rejected upon disclosing her diagnosis. Other people I know lost their jobs. The elimination of hepatitis for me means opportunity. A hepatitis B cure is something everyone living with hepatitis B longs for; it would also be a cure for the social illness of hepatitis B stigma."
The fight to eliminate stigma and discrimination associated with hepatitis B is a collaborative effort, and Janssen is proud to collaborate with the WHA to help improve the millions of lives who are affected globally. From helping change the course of other infectious diseases such as HIV, Janssen will leverage these learnings and never stop working to reduce the burden and improve health outcomes for those living with hepatitis B.
To read the full Stigma Report and policy recommendations to tackle stigma and discrimination within the global hepatitis B community, please visit the WHA site. |
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