Women living with hepatitis

Women living with viral hepatitis face unique challenges. While hepatitis affects women from all ages and backgrounds, there is limited data on the number of women living with hepatitis. Research primarily focuses on the burden of hepatitis B among pregnant women. Although a very important group, this focus limits overall knowledge of hepatitis in different stages of women’s lives. It is important to understand the experiences of all women living with or affected by hepatitis to ensure they have proper access to care and support. 

To support advocates in empowering women living with hepatitis, WHA has developed an advocacy briefing. It highlights the different challenges that different groups of women with hepatitis face and calls for greater action.  

Viral hepatitis affects women differently than men

Hepatitis affects women differently throughout their stages of life: 

  • Hepatitis B: Pregnant women have a high risk of passing hepatitis B to their baby. Hepatitis B also raises the risk for pregnancy complications. 
  • Hepatitis C: Although the incidence of hepatitis C is greater among women, they are more likely to spontaneously clear the virus and have slower progression to liver disease pre-menopause than men. Due to this lower burden of disease, many of the efforts to increase hepatitis C care are based on studies that were made up of predominately men, which has likely resulted in a gender-related treatment gap, with women less likely to receive treatment.  Among women, this treatment is even less among those of childbearing age and those who have given birth. This is a concern as although the risk of passing hepatitis C from mother to child during pregnancy is low, but higher in women living with HIV co-infection, but hepatitis C increases the risk of pregnancy complications. After menopause, the progression to liver damage for women living with hepatitis C advances more quickly.
  • Hepatitis E: Pregnant women with hepatitis E are at risk of acute liver failure, foetal loss, and mortality, particularly during the second or third trimester. During the third trimester, there is a 20 to 25 percent mortality risk for women with hepatitis E.

While research indicates that women experience hepatitis A similarly to men, there is no data on whether hepatitis D affects women differently than men.  

Women living with hepatitis are often the least likely to have access to healthcare 

Globally, women face more challenges in accessing quality health services due to sociocultural and economic factors and discrimination. Hepatitis affects women of all backgrounds, and can be particularly challenging for many marginalised women, including women experiencing homelessness, women who use drugs, women engaged in sex work, indigenous women, migrants, refugees, and women living with HIV.

Data on the burden of hepatitis in women is limited, but research in Africa found that the prevalence of hepatitis B and C among women increases with lower levels of education, higher levels of gender inequality, and lower representation of women in parliament.

It is important to understand the different challenges that different groups of women with hepatitis face to improve their access to care and support:  

Pregnant women 

Many women around the world live with the burden of having unknowingly passing on hepatitis to their babies. The burden of prevention of mother-to-child transmission (PMTCT) of hepatitis falls on women, which for many can lead to feelings of shame, guilt and a sense of failure. Women may worry about becoming pregnant, as they fear transmitting hepatitis to their babies or a bad pregnancy outcome. 

Pregnant women often fear sharing their hepatitis status, as the fear of infection has led to nurses and midwives refusing to assist in the labour and delivery of hepatitis positive women. It can also affect their relationship with their spouses and families, as some women are abandoned, divorced or forced to abort their babies. Stigma, fear and discrimination have also impeded the progress of administering the hepatitis B birth dose vaccine, which women may have to pay for if it is not provided in their country. 

"I was hospitalised because of my hepatitis symptoms when I found out I was pregnant. I knew little about hepatitis B at the time and I lived in constant fear of passing a potentially deadly virus to my child. It took a great toll on my mental health."

While PMTCT often focuses on the health of the babies of women with hepatitis, it should also include greater attention on the needs of women. They should have access to hepatitis vaccination, testing and treatment, antenatal care, sexual and reproductive health promotion, and essential and lifesaving care. Household contact screening and vaccination should also be provided to help dispel stigma and discrimination. 

Women who use drugs 

Data on women who inject drugs is limited, but there is evidence that suggests women are at a greater risk of acquiring hepatitis than men who inject drugs due to biological, social, and environmental factors, including their ability to access prevention services. It is common for a woman in a drug using or abusive relationship to look after others’ needs ahead of their own. For example, they are more likely to acquire hepatitis, HIV and other infectious disease through sharing injecting equipment.

Due to several factors including societal perceptions of what is ‘acceptable behaviour’ of a woman, women are more likely to face stigma and discrimination than men and less likely to access health services. Mothers who inject drugs are less likely to access reproductive and other health services, as they fear losing custody of their children.17 Women are also less likely to access harm reduction and drug treatment facilities, as some prefer women-only health services.

Health workers often do not receive training on how to address women who inject drugs who also live with hepatitis. The stigma associated with drug use can discourage people from accessing clean needles and syringes and adhering to drug treatments, which can further transmission of viral hepatitis.

Women engaged in sex work 

There is little data available on the global burden of hepatitis B and hepatitis C among women engaged in sex work. Research on women engaged in sex work often does not include the burden of hepatitis or their ability to access hepatitis services.   

Women engaged in sex work, particularly migrants, face many challenges accessing hepatitis services. They often have limited access to quality healthcarexix and face health inequities due to unsafe work and living environments, higher rates of structural violence, economic insecurity, and stigma. They are more likely to acquire hepatitis or pass it to their clients, as they are often in a poor position to negotiate safe sex practices.

Panel discussion: Hep Can’t Wait – Championing women living with hepatitis 

On Thursday 7 March, WHA hosted a panel discussion ahead of International Women’s Day, to explore the unique perspectives of women living with hepatitis. It also celebrated the women that are driving the hepatitis response and supporting other women living with hepatitis.  

Chaired by Rachel Halford, President of the World Hepatitis Alliance, panellists included: 

  • Shabana Begum, National South Asian Project Coordinator, The Hepatitis C Trust 
  • Marinela Debu, President of Romanian Association with Liver Disease (APH-RO); member of WHA, the European Liver Patients’ Association (ELPA), and APCR (Romania) 
  • Annie Madden, Executive Director, Harm Reduction Australia, and Project Lead, International Network of People who Use Drugs (INPUD) 

For more information on women living with hepatitis, please visit our resources: 

References

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