NOhep Medical Visionaries Forum EASL 2024

Stigma and discrimination faced by people living with viral hepatitis continues to be a significant barrier to hepatitis elimination. Stigma, often caused by misunderstandings about how hepatitis is transmitted, can drastically affect many aspects of someone’s personal and professional life including their mental health. People living with hepatitis are also subject to discriminatory practices which may impact their right to work, study, and travel.

The NOhep Medical Visionaries met in Milan at EASL 2024 to reflect on new data on hepatitis stigma from a recent European pilot survey conducted by the World Hepatitis Alliance (WHA) and the European Centre for Disease Prevention and Control (ECDC).

The speakers at the forum were:

WHA President, Rachel Halford, opened the meeting by sharing a snapshot of the new data from the hepatitis stigma survey and highlighted the impact of stigma and discrimination on people’s lives and their health seeking behaviour. According to the data, 34% of those living with hepatitis C and 25% of those living with hepatitis B reported being ‘worried that I would be treated differently from other patients by healthcare staff’ and 24% of those living with/had lived with hepatitis C and 21% of those living with hepatitis B had not told their families. Rachel reinforced that ‘you can’t underestimate the impact of hepatitis and how it can limit your life and how you interact with people’. This set the stage for Professor Maria Buti and Dr Kosh Agarwal’s reflections and the wider discussion with those in attendance.

Key takeaways from the forum were:

  • Stigma and discrimination exist at every level and there are intrinsic biases in the healthcare system that put blame and responsibility on the patient.
  • Health care professionals need to treat all patients with compassion and empathy and be educated on the impact of stigma and discrimination and the importance of addressing it.
  • Doctors may not always be best placed to support patients. It is therefore important to have peers who are trained and resourced as part of the clinical team. Experience has shown that having health care professionals and peers working together can be transformative, reduce stigma and help alleviate the emotional distress.
  • Testing for hepatitis should be routine. In Africa, the change in attitude and approach towards HIV testing helped address the stigma and now, offering a HIV test is routine. It was agreed that the same needed to happen for hepatitis and more diagnoses will lead to reduced stigma.
  • The data from the hepatitis stigma survey can help fill gaps, drive advocacy and is an important tool for discussions with payers and policy makers.

The forum was an important opportunity for health care professionals and the community to discuss this topic and it concluded with the key message that collective efforts are needed to reduce the stigma and discrimination faced by those living with/who have lived with hepatitis.

A full report on the stigma survey data will be shared later in the year.