Women, Pregnancy and Hepatitis C

In honour of International Women’s Day Louise Hansford, Hep C U Later Elimination Coordinator for the South, spoke to a group of women with lived experience of the hepatitis C virus (HCV).

Overwhelmingly the women we talked to spoke of feelings of shame, embarrassment and feeling ‘dirty’. When we explored these we heard stories of women being scared about onward transmission to their families, but in particular their children.  Menstrual blood was a big concern, and some women were reluctant to seek a romantic relationship because of their status.

“Being a woman and having Hep C makes you feel worthless in many ways, an invisible disease that never leaves your mind as a mother and a lover it can effect so many relationships as you become scared to get close to people.”

“I didn’t feel like it was normal to have hep C and I felt different.”


Pregnancy and misinformation around how HCV is transmitted was mentioned, with a couple telling us they chose not to have a baby for fear they would pass it on, or for how they might be treated. One of the women spoke about their experience of childbirth where midwives wore full clinical protection suits and how it made her feel. “It ruined my experience of childbirth and really impacted me bonding with my child.”

Whilst these experiences may be due to genuine misunderstanding of HCV transmission routes, they ultimately impact on individual women.  A literature search revealed there is a lack of research on the experiences of pregnant people who have HCV in maternity services, and a lack of awareness of the virus and transmission routes amongst staff.

What does the literature say?

Some studies have found different maternal outcomes for people with HCV in pregnancy compared with the rest of the population.  Some of these differences have been related to being at an increased risk of a poor maternal or foetal outcome.

One study by Pearce (2020) highlighted that pregnant women who are at risk of HCV due to substance use may delay or avoid prenatal care because of stigma within healthcare towards people who use drugs, and potential child welfare concerns. Polis (2015) noted issues of disclosure, guilt and concern for newly-diagnosed HCV-positive women, and lists studies of stigmatisation and discrimination from healthcare professionals.  Gifford et al (2003) reports that nearly half of women in their survey experienced perceived negative treatment by a healthcare professional due to having HCV.

Some of the findings within the literature search continue to impact upon women.  One woman said “My baby was tested at 3 days old for hepatitis C, this was an horrendous experience and I now know was totally pointless as she would have had my maternal antibodies until she was 18 months old.” 


Women also spoke to us about not feeling able to engage with treatment as they had caring responsibilities and could not chance being unwell, leading to poorer personal health outcomes later in life.

“I left it too late to have treatment. I cleared the hep c but my liver had suffered too much damage and a few years later I needed a transplant. I didn’t really have any symptoms for Hep C.  I became abstinent from drugs and kind of forgot about it. When I moved to a new doctor and had a check-up at the hep clinic, they offered me interferon as I had a lot of scarring and cirrhosis. I cleared the hep c. However, I put on a lot of weight and gained a very fatty liver on top of the cirrhosis. Which led to liver failure.  I believe if I’d had treatment sooner, it might not have got so bad”.

Other women spoke positively of their HCV treatment experiences.

“Recognising that I had taken steps to heal my body meant my life became more precious in my recovery.” 

“I had hep C once but I am still beautiful.”

Testing to identify a HCV infection as early as possible can be beneficial to prevent harms in later life.  Treatment can now be given to children from the age of 3 and whilst hepatitis C treatment is not generally given during pregnancy a simple course of tablets can be started after birth.

It is vital that professionals in all areas of healthcare have a good understanding of hepatitis C and how it is transmitted.  Vital to this is ensuring professionals understand how the stigma associated with the virus can impact upon people’s health, their experiences of healthcare, and their likelihood of accessing it in the future.


Thank you to Emma George MPFT for assisting with the literature search, and for all the women who shared their experiences with us.

Louise’s experience

I was in active heroin and crack cocaine addiction from 1996 -2003; when I started injecting it was with clean equipment, I had a good awareness of HIV as my first boyfriend when I was 16, Duncan, was a haemophiliac who had been infected with HIV from contaminated blood products. However a few years down the line my choices to use new equipment were restricted and I became complacent about BBVs.

I went back to prison in September 2001; at this point I had a broken hip, osteomyelitis (bone infection) and was very poorly. A nurse who I liked asked me if I wanted a hepatitis C test, I didn’t really understand what it was but because I liked her I said yes. A couple of weeks later she told me I had hepatitis C. This didn’t really bother me until my release in 2002, when I became paranoid about my razors and toothbrushes. I felt ashamed about having hepatitis C. I joined a 12 step fellowship where lots of people had hepatitis C and heard nothing but horror stories about treatment. At this time you needed to be 2 years drug free to be referred for interferon treatment, but because of my other health conditions I was offered it the first time in around 2004.

I said no as I was scared about relapsing, mental health issues and the impact on my relationships. I secured a job in February 2007 and a few days later was offered treatment again, I spoke to my partner and daughter and collectively we decided I should do it. They said I would lose weight, I didn’t which devastated me! I worked all the way through, did my degree and maintained my life. I had the support of a friend who was also doing it and we spoke often. If I hadn’t have done interferon I would not be alive now.  I subsequently went on to have a third child, and the midwife raised my hepatitis C status as an issue.  However, when I advocated for myself she agreed to do an RNA test and if that was negative not to write it anywhere on my maternity notes.