Posted on: 28 July 2023
World Hepatitis Day (28 July) aims to raise awareness about the blood-borne virus and talk about the impact of hepatitis in our communities.
‘We’re not waiting’ is the call to action for 2023.
CNWL has recently appointed the first NHS Hepatitis B Peer Support Worker in the UK; Joy Ko started with us at the beginning of July.
Joy is originally from Hong Kong and has lived experience of Hepatitis B (Hep B). This month, she is celebrating her one-year anniversary in the UK, moving to London with her husband and two children.
She will be invaluable support for the 800 people that attend our Viral Hepatitis Service at the Bloomsbury Clinic in central London.
With more than 200,000 people in the UK living with Hep B and more being diagnosed every week via the NHS England ED Testing Policy, patient advocacy and peer support will be extremely important.
Living with stigma
Joy, who was first diagnosed at 22 years old, explains that “when I was diagnosed it was such a shock to me. I didn’t know who to talk to and I didn’t know what questions to ask”.
Discovering her positive status after donating blood, she says: “I had no idea how I got it. I wasn’t having a relationship, and no one in my family has Hep B”.
“I felt a strong sense of loneliness. The doctor had a brief talk to me and didn’t explain what Hep B is. I was being teased by the staff at the hospital that my blood was not wanted anymore”.
Hepatitis B is a leading cause of liver cancer and there remains considerable stigma to diagnosis.
“Later, I was in a relationship and it took a lot of courage to share my diagnosis with him,” Joy continues. “But the consequence was that he decided to end our relationship because I was not healthy, in his definition.
“I felt like I was a less desirable person. I was ashamed. It was the stigma from society but also the self-stigma. I stigmatised myself and gave myself a label. My family were not supportive either.
“In my culture, Hep B is seen as similar to HIV. It cannot be cured, and people link this with unsafe sex. Up until the 1980s, there was no universal Hep B vaccination programme in Hong Kong”.
Joy acknowledges there is confusion in the community about viral hepatitis.
“There are so many ways to get Hep B, such as unsterilized needles. The most typical way is from mother to baby during child birth”.
The role of peer support
Things changed for Joy when she decided to start a family, and during her pregnancy she started treatment for Hep B. However, she was worried about the effects on the baby.
“When I discussed my distress and concern about the impact of medication, I was introduced to a peer worker who shared her story. She told me about her family and when she found out that she had Hep B, how she started medication, and that she is now very healthy with two healthy children.
“It was a huge relief to talk to someone who had been in my situation. This was the point where I really started to believe that I would be fine. It was about hope. It helped me to make a lot of changes for the better.
“I decided that I wouldn’t be limited by Hepatitis B anymore. It’s something that is manageable. My husband and my sons keep up their regular vaccinations. The great news is that I have not passed Hep B to my family and I am living well alongside my Hepatitis”.
Joy wants to make use of her unique experience as a person living well with Hep B, and her strength in overcoming stigma.
“I have lived through the struggles, the difficulties that Hep B patients face. I want to be a role model, proving that you can live a happy and healthy life alongside Hepatitis B.
"There is nothing to fear and there is support available. Don’t be scared. Don’t feel you are alone. Hep B is just a small part of your life and you cannot let it define you”.
What next?
Joy will be able to share her lived experiences to help guide patients through their treatment journey, supporting them with their new diagnosis, and engaging with care.
“The dream is to start a self-help support group. It’s difficult for Hep B patients to come out and share their story. I hope my work and personal lived experience will encourage others to tell their own stories and make Hepatitis B so much more socially acceptable. Let society know what Hep B is really all about”.
Joy stresses that World Hepatitis Day is a great opportunity to raise awareness about the importance of knowing your status and to encourage testing.
“World Hepatitis Day is about helping people understand there is a life after a diagnosis, but the only way to manage this is to know that you have it. I really hope it raises awareness and encourages everyone to get tested, know their status”.
We are really looking forward to working with Joy and are keen for others to know about her role.
London hepatitis information
We offer care for Hepatitis B and C at the Bloomsbury Clinic in London.
If you need support or want to get tested, please contact: 020 3317 5100 or visit: https://www.sexualhealth.cnwl.nhs.uk/hiv-and-hepatitis/