Feature

From the Margins: a book review

Betsy Goodfellow from Pharmafocus reviews Gilead’s innovative new book, From the Margins. Described as ‘the most difficult book to read’, it highlights stories of hardship, stigmatisation, abuse and marginalisation

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In September 2023, Gilead Sciences launched a new book, From the Margins, at London’s Wellcome Collection. It’s easy to see why this book stands out from others, as all the text has been entirely written in the margins of each page, making it physically difficult to read. The content is also emotionally taxing, as six individuals ‒ Joshua, Husseina, Kieron, Leanne, Rebecca and Stewart – share their stories of ‘hardship, stigmatisation, abuse and marginalisation’.1 Within these themes, they explore topics including HIV, cancer, religion, sexuality, race and more, and talk about their journeys to overcome these challenges.

In the foreword, Professor David Olusoga OBE, talks about inequalities within the healthcare systems, the marginalisation of the book’s contributors and the need for diversity within the NHS and other health systems, as well as within society as a whole, to help to combat and prevent further discrimination.

Olusoga says: “Human societies have always been unequal and human beings have always displayed a tendency to recoil and retreat from illness and disease. The wealthy and the well connected have always been afforded access to care and treatment that the poor and marginalised have been denied. At times whole communities or ethnic groups have come to be associated with certain disease and conditions.”1

He added that “as the personal testimonies that follow in this volume powerfully demonstrate, these historic patterns have not been consigned to history”.1

The six stories within the book cover hard-hitting topics and explore many different areas of marginalisation, demonstrating that this is not a minor problem that can be easily solved, but rather one that will require significant adjustments from both health systems and society at large. The journeys in this book centre around:

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Joshua Royal, a young, gay, Black man who contracted HIV and has lived with and overcome racism and discrimination. He now runs an organisation called The Naked Truth where he has forged his own community

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Husseina Hamza, a Muslim woman with HIV, who fought isolation and stigmatisation within her own community. She has now co-founded Red Ribbon Living Well to provide support for others living with HIV, as well as those experiencing mental health issues and domestic abuse

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Kieron Allen, a man who has struggled with addiction and contracted Hepatitis C. He has been working with the Hep C Trust to help eradicate the disease and educate others while encouraging testing and treatment

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Leanne Pero, MBE, a young Black woman who developed breast cancer and had to fight racism and ignorance within her community and the healthcare system. She has now founded the Leanne Pero Foundation and Black Women Rising, aiming to empower women of colour throughout their cancer diagnoses

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Rebecca Tallon de Havilland, a transgender woman from Ireland living with HIV, who has dealt with stigma and ignorance, and now runs the #ProjectBootCamp programme as well as running ‘trans training’ for various organisations and working with HIV Ireland

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Stewart O'Callaghan, an LGBTQ+ man who lives with blood cancer. Having struggled to find a community of LGBTQ+ people with cancer, he started an LGBTQ+ group at the Macmillan Centre. Sadly, he was not well enough to attend the book launch.

“Through From the Margins, Gilead is shining a light on these inequalities, reminding readers that ‘we all have a part to play – only together can we make a real difference’”

In the book’s afterword, Dr Véronique Walsh, Gilead Sciences’ general manager for the UK and Ireland, concluded: ‘This book aims to raise awareness and draw attention to the plight of those in the margins as well as highlight how diverse inequalities can be. Most importantly though, it demonstrates to those unheard that they are not alone and there is a way. The stories of the advocates remind us that to support diverse communities now, we must listen, learn and change so we can break down barriers to better support distinctive individuals and communities.’1

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According to the King’s Fund: ‘Health inequalities are avoidable, unfair and systematic differences in health between different groups of people.’2 It is estimated that one in eight (13%) LGBTQ+ people have experienced unequal treatment from healthcare staff due to their gender or sexuality and one in seven (14%) have avoided treatment for fear of discrimination.3 There are also vast health inequalities within HIV diagnoses and testing; while data shows a fall in diagnoses within Black and Asian communities, this is likely due to reduced testing rather than a fall in transmission.4 Rates of late diagnosis, associated with worse outcomes, are at 42% in England, with the rate of late diagnosis among heterosexual women being 51%.4

Similar health inequalities exist across the board, from cancer treatment to HIV diagnosis, LGBTQ+ health concerns and women’s health issues. Reflecting on these challenges, Dr Walsh suggests tackling health inequalities through:

1. ‘Hearing and acting on the patient voice’1

2. ‘Building trust through equitable access to information’1

3. ‘Partnership with the NHS.’1

The book is both literally and emotionally difficult to read, as the stories printed solely within the margins of each page remind the reader of the often invisible struggles many of our peers are facing, while also serving as a constant, physical reminder of the difficulties the contributors have faced.

Through From the Margins, Gilead is shining a light on these inequalities, reminding readers that ‘we all have a part to play – only together can we make a real difference’.1

The book can be accessed online via Gilead Sciences’ website.