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Hepatitis is an inflammation of the liver commonly caused by viral infection. There are five main hepatitis viruses, referred to as types A, B, C, D and E. Every 30 seconds, someone dies from a viral hepatitis related illness. The disease can affect anyone, but underserved communities are disproportionately affected. Chronic hepatitis B and chronic hepatitis C are among the life threatening infectious diseases that cause serious liver damage, cancer, and premature death.
Chronic hepatitis B and chronic hepatitis C are neglected, silent infectious diseases with a burden that has surpassed malaria, human immunodeficiency virus (HIV) and tuberculosis (TB) in Africa. Globally, 354 million people are living with the hepatitis B or C virus. According to African Center for Disease Control and Prevention, the African region has the highest of hepatitis B, where 82.3 million persons are living with chronic hepatitis B. Two of every three children infected with hepatitis B globally are born in Africa and hepatitis B infection acquired at birth or in early childhood is the most common cause of primary liver cancer in adulthood. In Sierra Leone, according to a recent meta-analysis by Yendewa et al [1], 1 out of every 8 persons is infected with hepatitis B, which means approximately 1 million Sierra Leoneans have chronic hepatitis B infection.
Millions of people living with hepatitis B face an added burden of stigma and discrimination. Stigma is defined as a social process, experienced, or anticipated, and which is characterized by exclusion, rejection, blame, or devaluation resulting from experience, perception, or reasonable anticipation of an adverse social judgement about a person or a group [2]. Studies confirm key underlying reasons for stigma included fear of infection, as well as negative assumptions and stereotyping around the sources of infection, with hepatitis B transmission in adults often being perceived as associated with the use of injectable drugs, sexual promiscuity, or homosexuality.
Stigma resulting from hepatitis B infection has contributed to discrimination, a reduction in quality of life, and difficulty accessing employment, education, and immigration. Studies have been done to confirm the psychological responses to discrimination which include trauma, suicide, mental health challenges, depression, economic instability, and social isolation. People living with hepatitis B go through extreme poverty as they must pay out of pocket to manage their life-long disease. Many young Sierra Leoneans who have ambitions to travel abroad to study or seek greener pastures have been refused a visa after an unknown positive status was revealed to them. Young aspiring individuals are stripped off great job opportunities in Sierra Leone, because of their hepatitis B positive status.
Lack of knowledge about the mode of transmission results in unnecessary stigma and discrimination. So let us debunk some of the myths and misconceptions surrounding this silent killer virus. Hepatitis B is not transmitted through casual contact, neither through sharing of food nor kitchen utensils. Many reports have shown that even people living with hepatitis B have poor understanding of the mode of transmission of the infection which can result to internalized stigma. It is sad to witness a parent scared or have a sense of guilt to transmit the virus to their
children. If we think about it, what can a poor man in a village, or an uneducated person know about the disease if he can’t read? Thus, the importance of community outreach programs should never be underestimated. Notwithstanding this, even educated people do not know much about HBV infection and its mode of transmission.
Household transmission of the virus, which is a form of horizontal transmission, can occur through blood-to-blood contact from an open wound of an infected person or through sexual contact. Therefore, it is very important to disinfect surfaces that have been contaminated by blood and to keep wounds covered. Other than that, parents can hug, play, kiss their children and eat together. Notwithstanding that, sharing of toothbrushes, nail clippers and razors can lead to transmission of hepatitis B. It is however crucial for household members to be vaccinated. Children can transmit the virus to each other through wounds or bites but not through tears, sweat or urine. However, if a child has been immunized against the virus, this form of transmission rarely occurs.
In a first published study in Sierra Leone by Ghazzawi et al [3], on assessment of stigmatization attitudes, 43.5% of the participants had concerns with sharing food or utensils with someone with hepatitis B. Similarly, 44.1% stated that they would have concerns with having casual contact or working with a person known to have hepatitis B. Overall, nearly half (49.3%) expressed at least one stigmatizing attitude towards people with hepatitis B.
A big misconception in Sierra Leone about the mode of transmission of hepatitis B is that people believe it is transmitted through sweat, one big myth that needs to be demystified. According to Ghazzawi et al [3], almost 68% of people believed hepatitis B is caused by a curse or evil spirit. This underscores the need for educational interventions at all levels of society to dispel myths and misconceptions by embarking on community awareness raising and sensitization. Community education and mobilization campaigns related to hepatitis B vaccination are critical to preventing CHB infection and reducing stigma and discrimination toward people living with hepatitis B.
Disclosure of positive hepatitis B status to sexual partners and family members remains a major challenge for people living with hepatitis B. I have come across lived experiences of people living with chronic hepatitis B whose partner and/or family member have abandoned them because of their status. A handful of Sierra Leoneans are very hesitant to disclose their status to their partners, especially when we know practicing a polygamous relationship is a way of life and a culture in our society, keeping a positive status of the virus a secret and continuation of practicing unprotected sex with partners can results in a chain reaction of transmission of the virus. Remember that symptoms of hepatitis B infection appear after 9-21 weeks of exposure to the virus.
According to Ghazzawi et al., assessment of health-seeking behaviors by the public, yielded overwhelmingly positive results, where 80.4% were willing to take medication for treatment if they tested positive for hepatitis B, while a similar proportion (78.8%) were willing to undergo regular clinic follow up every 3 to 6 months for the management of hepatitis B. This study shows that people are willing to seek healthcare if the environment is conducive to do so and having health care professionals with adequate knowledge to offer the dire need for appropriate healthcare services and psychosocial support. Studies in SL have demonstrated poor knowledge of hepatitis B infection among healthcare professionals.
Although data does not exist in Sierra Leone to elucidate this, there are studies done in other countries which reveal that healthcare professionals themselves contribute to stigma and discrimination among people living with hepatitis B. hepatitis B-related stigma and discrimination result in low uptake of hepatitis B education, screening, immunization, and sound preventive practices among at-risk individuals, underscoring the importance of effective hepatitis B education among healthcare professionals.
Now that a hepatitis policy exists for the first time in Sierra Leone, we are eagerly waiting to see government take swift actions towards providing dignified and equitable services to those living with hepatitis B and to deliver effective prevention strategies and health promotion programs to eliminate the virus by 2030! An ambitious target which all countries with high burden of the disease have set as a target for elimination.
Sadly, there are no anti-discrimination laws and policy in Sierra Leone to protect the rights of Sierra Leoneans affected with hepatitis B. Eliminating the stigma surrounding hepatitis through the introduction of policies and structural changes has been named as a key factor in hepatitis elimination by the World health Organization. Policy makers and decision-makers have an essential role in ensuring that anti-discrimination laws, public health policy, education and health systems work together with civil society and the affected communities to tackle the crisis of stigma and discrimination. To address these challenges, and as KnowHep Foundation is a professional body that advocates for elimination of VH in Sierra Leone, in collaboration with the World Hepatitis Alliance, we urge government to adopt the following policies:
1. 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.
2. Ensure all newly diagnosed individuals are linked to appropriate and supportive healthcare services for ongoing monitoring and management.
3. Ensure equitable and affordable access to prevention of mother-to-child transmission (PMTCT) programmes for all women.
4. Ensure that mental and emotional support is provided to people diagnosed with hepatitis B and their families.
5. Require that all healthcare professionals receive ongoing hepatitis education and are aware of stigma and how to address it.
6. Ensure testing for hepatitis B is conducted in the context of healthcare 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.
7. Anti-discrimination laws and policies must be formulated, and correctly implemented, and adequate recourse is given to enable people experiencing discrimination to pursue justice through the legal system.
8. Ensure there are legal protections in place for people with hepatitis B, including protection from government sanctioned discrimination.
9. Ensure that immigration and visa policies do not limit the freedoms of people living with hepatitis B, because of their diagnosis.
10. People living with hepatitis B should have their voice heard. Sharing lived experiences will reduce stigmatization. People living with hepatitis B must come forward to report any form of discrimination against them and they have the power to drive political will.
Despite the availability of hepatitis B medication and a vaccine, many people living with hepatitis B in Sierra Leone are still unable to access or afford the treatment and preventative measures they need. The poor people are left alone to tackle the epidemic. Policy makers must act now to improve the lives Sierra Leoneans who are currently impacted by hepatitis B. We are NOT WAITING, and we cannot leave people behind. The lives of people living with hepatitis B are impacted by stigma and discrimination every day. Their human rights must be protected. With concerted effort we can end stigma and discrimination and improve the lives of people affected by hepatitis B in Sierra Leone.
Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.
1. Transmission of hepatitis B – how hepatitis B can be transmitted.
2. Online Support Groups
3. Factsheet – When Someone in the Family has Hepatitis B
4. Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status
References
1. Yendewa GA, Wang GM, James PB, Massaquoi SPE, Yendewa SA, Ghazzawi M, Babawo LS, Ocama P, Russell JBW, Deen GF, Sahr F, Kabba M, Tatsuoka C, Lakoh S, Salata RA. Prevalence of Chronic Hepatitis B Virus Infection in Sierra Leone, 1997-2022: A Systematic Review and Meta-Analysis. Am J Trop Med Hyg. 2023 May 22;109(1):105-114. doi: 10.4269/ajtmh.22-0711. PMID: 37217165; PMCID: PMC10323991.
2. Martin N., Johnston V. A Time for Action: Tackling Stigma and Discrimination. Mental Health Commission of Canada; Ottawa, ON, Canada: 2007. [Google Scholar] [Ref list]
3. Ghazzawi M, Yendewa SA, James PB, Massaquoi SP, Babawo LS, Sahr F, Deen GF, Kabba M, Ocama P, Lakoh S, Salata RA, Yendewa GA. Assessment of Knowledge, Stigmatizing Attitudes and Health-Seeking Behaviors Regarding Hepatitis B Virus Infection in a Pharmacy and Community Setting in Sierra Leone: A Cross-Sectional Study. Healthcare (Basel). 2023 Jan 6;11(2):177. doi: 10.3390/healthcare11020177. PMID: 36673546; PMCID: PMC9859485.