2022 News

World Hepatitis Day event ‘Storytelling for Advocacy’ gives voice to those impacted by a disease that kills 200,000 every year

To mark World Hepatitis Day, organisations from across South Africa are teaming up to raise awareness of viral hepatitis, which kills 200,000 people across Africa every year. A virtual event – Storytelling for Advocacy – will shine a spotlight on the people impacted by viral hepatitis, and demonstrate the power personal stories can have on advocacy efforts and policy change.

According to the World Health Organization (WHO), dying from viral hepatitis in Africa is becoming a bigger threat than dying from HIV/AIDS, malaria or tuberculosis. Chronic viral hepatitis affects over 70 million Africans (60 million with hepatitis B and 10 million with hepatitis C).

In South Africa, there are an estimated 3.4 million people with hepatitis B and 400,000 people with hepatitis C (HCV). An estimated 82,500 people inject drugs – the primary way that HCV is transmitted – with HCV prevalence in some cities over 90 per cent.

“Hepatitis B infection is preventable via vaccination,” explains Dr Andrew Scheibe, technical advisor at TB HIV Care in Cape Town. “And there are treatments available for hepatitis C that have a 95 per cent cure rate, although these Direct Acting Antivirals (DAAs) are unfortunately not yet available in South Africa.”

The event will be held virtually at 8.30am South African time Monday 25th July 2022 (three days before World Hepatitis Day). It will last for 90 minutes and aims to tackle one of the main drivers that stop people at risk of viral hepatitis accessing treatment and care.

“People most at risk of viral hepatitis tend to be from very marginalised communities and face high levels of stigma and discrimination,” explains Angela McBride, director of the South African Network of People Who Use Drugs (SANPUD). “The endemic will not end, until the stigma and discrimination which stops so many from seeking healthcare, ends too. We hope that by sharing the voices of those impacted, we can start to break down these barriers.”

Led by the International Network on Health and Hepatitis in Substance Users (INHSU) and held in collaboration with TB HIV Care, the virtual ‘Storytelling for Advocacy’ event will give people with lived experience of using drugs and/or living with viral hepatitis, the chance to share their stories.

Partners of the event include The South African Network of People Who Use Drugs (SANPUD), South African National AIDS Council (SANAC), the South African Central Drug Authority (CDA), the South African Department of Social Development, the South African Department of Health, South African National Aids Council (SANAC), alongside organisations from Kenya.

Other speakers include:

  • Award-winning South African storyteller Mathapelo Mofokeng, who will help organisations and individuals understand the power of storytelling, and how personal stories can influence advocacy efforts and facilitate policy change
  • Dr Kgomotso Vilakazi-Nhlapo, Viral Hepatitis Lead, National Department of Health, South Africa
  • Koketso Mokubane, Peer, South African Network of People Who Use Drugs, South Africa
  • Wamda Abuelhassan, Gastroenterologist, Johannesburg, South Africa
  • Dr Andrew Scheibe, Technical Advisor at TB HIV Care
  • Plus, more to be announced from Kenya

“This event builds on a range of activities that INHSU has delivered with partners in South Africa since 2020,” explained Nikitah Habraken, acting executive director of INHSU. “These coordinated advocacy efforts are so important in raising awareness of the inequalities facing people who use drugs and ensuring that viral hepatitis elimination efforts stay on national agendas.”

The free-to-attend virtual event is open to physicians, nurses, community workers, policy makers, program managers, people with lived experience, advocates and anyone with an interest in the health and wellbeing of people who use drugs.

Register here: https://ashm.zoom.us/meeting/register/tZcvde-oqz4oEtNXmpY-3UZi0kCrsCUjl0XO

More information:

  • For South Africa specific interviews please contact Phumlani Malinga, Communications Department at SANPUD dugganmalinga@gmail.com
  • For images, general enquiries, or interviews with the International Network on Health and Hepatitis in Substance Users please Brooke Nolan on: Nolan@inhsu.org

Sources:

Reflecting on Robben Island and healing through art in commemoration of Mandela Day

To commemorate Mandela Day 2022, 18 July, TB HIV Care, a non profit organisation working to prevent, find and treat TB and HIV and other major diseases, partnered with acclaimed visual artist, Lionel Davis to speak about mental health and art through an online Facebook Live event.

 

Lionel Davis grew up in District Six where he became politically sensitized through his experience of police violence. In 1964, he was arrested and sentenced to seven years in Robben Island for ‘conspiring to commit sabotage’. There he came into contact with former President, (and then fellow political prisoner) Nelson Mandela. On leaving Robben Island Lionel was put under house arrest for a further five years.

 

This extended deprivation of freedom was traumatic. Without the benefit of counselling or support for this trauma, Lionel began turning to art to cope with the mental strain. He worked as a community organiser for the Community Arts Project (CAP), at Rorke’s Drift and ultimately completed a BA in Fine Art at the University of Cape Town, exhibiting in New York, Gaborone and Johannesburg. In 2017, a retrospective exhibition was held at the South African National Gallery that showcased 40 years of Lionel’s artwork.

 

During his Facebook Live talk with TB HIV Care on 18th July, Lionel covered his own experiences of healing through art and gave some insights into how others could follow a similar path.

 

This topic is a relevant to TB HIV Care as mental health challenges can be both a predictor of greater vulnerability to infection with HIV, and an effect of a diagnosis of either HIV or TB.

 

“Mental health challenges are commonly encountered with any diagnosis, as people struggle to come to terms with their health status, and HIV and TB are no different” said Alison Best, Communications Manager for TB HIV Care.

 

“This talk with Lionel, who is such an inspirational figure, helps to destigmatise mental health challenges and provides a positive role model for how negative experiences can be reworked and transformed through creative expression.”

Watch the talk here

Prof Harry Hausler visits WHO headquarters to support civil society engagement

In the first week of June 2022, Prof Harry Hausler visited Geneva, Switzerland, in his role as a member of the World Health Organization’s (WHO) Civil Society Task Force on TB (CSTF). This body exists to “mainstream the voices of TB civil society and survivors in the work of WHO, national TB programmes and multisectoral partners.”[1]

The first few days were spent observing the WHO’s Strategic and Technical Advisory Group for Tuberculosis meeting, which aims to provide the latest scientific and technical guidance to WHO, including briefing the Director-General, Dr Tedros Adhanom Ghebreyesus on the WHO’s TB programme.

Thereafter, the CSTF met to review progress during the previous year and the upcoming year’s workplan. Of particular interest in the upcoming year will be:

  1. The civil society hearing in preparation for the next United Nations High Level Meeting on TB in 2023
  2. Development of WHO guidance for engagement of communities and civil society to end TB

The visit concluded with a meeting with Director-General, Dr Tedros Adhanom Ghebreyesus on the 9th June and a virtual Global Townhall meeting to highlight the CSTF priorities and achievements to date and launch the latest progress report, and to engage with participants in an open dialogue on the future priorities for the Task Force.