What you don't know about Hepatitis B | Supa Chantschool | TEDxNHS

Key Concepts:

• Hepatitis B (HBV): A viral infection that attacks the liver and can cause both acute and chronic disease.
• Asymptomatic: Showing no symptoms of a disease.
• Mother-to-child transmission: The spread of Hepatitis B from a pregnant woman to her child during birth.
• Viral Load: The amount of virus in a person's blood.
• Antivirals: Medications that slow down the replication of viruses.
• Tenofovir and Entecavir: Common antiviral medications used to treat Hepatitis B.
• Clinical Trials: Research studies that evaluate new medical treatments, devices, or interventions.
• Seroconversion: The development of antibodies in the blood, indicating a change in immune status. In the context of Hepatitis B, it can mean the virus is no longer detectable.
• Liver Fibrosis: Scarring of the liver.
• Liver Cancer: Cancer that originates in the liver.
• Opt-out testing: A system where testing is performed unless the individual actively declines.
• Stigma: A mark of disgrace associated with a particular circumstance, quality, or person.
• Headb Companion: An organization providing information and support to people living with Hepatitis B.

Early Diagnosis and Misinformation (1998):

• The speaker recounts being diagnosed with Hepatitis B at age 8 during travel vaccinations.
• Initial shock and concern from parents due to misinformation and stigma surrounding Hepatitis B.
• The speaker's mother was also diagnosed, revealing mother-to-child transmission as the source.
• The speaker experienced isolation and restrictions due to misinformation from the healthcare system, such as being told not to share food or toys with other children.
• The speaker built a "wall of fear" and felt misunderstood due to the stigma.

Lost to Care (Age 16):

• Hospital appointments stopped at age 16 due to being transferred from pediatric to adult care and being "lost in the system."
• The asymptomatic nature of Hepatitis B made it easy to prioritize other interests.
• Treatment guidelines only recommend treatment if the viral load is high enough, leaving many untreated.

Re-engagement with Healthcare (University):

• At university, the speaker needed travel vaccinations and disclosed their Hepatitis B status, leading to re-engagement with the healthcare system.
• Met a new doctor who demystified stigmas and encouraged further research.

Career in Life Sciences:

• The speaker pursued a career in life sciences, becoming a healthcare analyst and learning about Hepatitis B treatments like Tenofovir and Entecavir.
• These antivirals slow down virus replication but have potential side effects.
• The speaker participated in clinical trials, contributing to better treatments for Hepatitis B.
• The speaker's Hepatitis B was suppressed to the point where their healthcare team recommended stopping Tenofovir to see if their immune system would clear the virus.
• The speaker is currently well but not cured, with some evidence of Hepatitis B replication remaining.

UK Government Initiative (April 2022):

• The UK government aimed to reduce HIV transmission to zero by 2030, including Hepatitis C and Hepatitis B in opt-out emergency department testing in London.
• Preliminary results showed high rates of undiagnosed Hepatitis B (1 in 300).
• A lack of clear link to care for those diagnosed with Hepatitis B was identified as a problem.

Personal Reflections and Call to Action:

• The speaker reflects on the potential consequences of remaining undiagnosed and the risk of infecting family members.
• The speaker's mother was cured of Hepatitis B after being on Tenofovir for 4 years and seroconverting, which happens in 4% of people.
• The speaker runs Headb Companion, providing information and support to people living with Hepatitis B.
• The speaker calls for challenging the stigma of Hepatitis B, embracing responsibilities to each other, advocating for better testing and treatment, supporting clinical trials, and ensuring no one goes through it alone.

Conclusion:

The speaker shares their personal journey with Hepatitis B, highlighting the impact of early diagnosis, misinformation, being lost to care, and the importance of ongoing research and support. The narrative underscores the need for improved testing, treatment access, and destigmatization to create a future where Hepatitis B is not a life sentence.