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Public Engagement

Reigniting the HIV conversation

A piece written by Rebecca Mbewe - research assistant with the SHARE collaborative at Wolfson Institute of Population Health, QMUL. Rebecca comes from a community engagement background and brings with her a wealth of experience into the research field. She writes about some of the more recent work that she has been involved in – a book which she co-authored with four other Black African Women ‘Our Stories Told By Us’

The authors of 'Our Stories Told By Us' - five Black women - stand together smiling. Four of the women wear bright, geometric patterned clothing.

The authors of 'Our Stories Told By Us': Charity Nyirenda, Rebecca Mbewe, Winnie Ssanyu-Sseruma, Memory Sachiknonye and Angelina Namiba.

It may be surprising to some that HIV has been on the horizon for the last 40 years. Some will be old enough to remember the frightening ‘tomb stone’ adverts warning people about what was quickly becoming an epidemic. Others will have missed that era and now either view HIV as just another long-term health condition which is no longer a threat, or may be part of the population that is not aware that HIV even still exists.   

For roughly 105,000 of the UK population, it is their reality. These are the number of people living with HIV in current statistics – 94% of whom are aware of their diagnosis. The rest remain undiagnosed. Those that are connected to the HIV sector in some way or another will be more than aware that HIV is still very much present, perhaps in a different guise than many years ago – but it still thrives in our communities. As it stands, collaborative efforts by healthcare agencies, Government, HIV organisations and individuals are taking place to ensure there are no new diagnoses by 2030.   

However, even though huge progress has been made in understanding HIV and treatment options and interventions, stigma related to HIV continues to be one of the biggest hinderances to achieving this target. Amongst the most affected communities are the different Black African Communities and whilst there is a lot of epidemiological data to reflect this, there has been no record of the involvement of members of these communities and of African people’s past and continued contribution, strength and resilience towards fighting this epidemic in the UK.   

It is this observation that led to five Black African women in the UK, Angelina Namiba, Charity Nyirenda, Memory Sachikonye, myself and Winnie Ssanyu-Sseruma – all with lived experiences of HIV - to consider how we could use our voices, activism and advocacy experiences to try and approach the issue of stigma. The idea of a book was born – and as this idea evolved, in true HIV collaborative fashion, we brought together over 40 people to contribute their stories. These are all people living with HIV and their allies, because we recognised that the experience of living with HIV is more than one voice. It was important to encapsulate this within the book and this was achieved beautifully. The choice of the number ‘40’ individuals included is that it has been 40 years before the first case of HIV was officially recognised and defined.   

The book launch in May was huge success attended by over 100 people and brought to life the first book of its kind – ‘Our Stories Told by Us’. A powerful accolade to the stories, experiences, struggles, triumphs and huge contributions rarely mentioned and acknowledged from Black African Communities. The hope is that this book will re-ignite conversations about HIV and the work that still needs to be done. We also hope it helps people living with HIV to know they are not alone, there is always support and they need not walk this journey alone. The book has been a huge labour of love and the outcome one to be greatly celebrated.  




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