1.5 million & us

Of the 1.8 million adolescents living with HIV worldwide, 1.5 million live in sub-Saharan Africa*.

1.5 million and us is a digital storytelling project that involved 15- to 19-year old adolescents living with HIV and taking Antiretroviral treatment (ART) in Cape Town, South Africa.

The purpose of the project was to :

explore individual, interpersonal and structural factors that can either challenge or support accessing HIV care and adhering to ART amongst adolescents living with HIV in high HIV prevalence communities in Cape Town, South Africa,
examine participants’ experiences and outcomes associated with engaging in the digital storytelling process, and
evaluate audience reception to the digital stories and its potential effect on viewers’ attitudes towards HIV testing, accessing and adhering to ART, and to people living with HIV.

The project was conceived by my colleague Lisa Butler, and we worked together to devise a 1-week storytelling program that we implemented in Cape Town in September 2019.

Watch the videos below or visit the showcase on Vimeo.

Created with support from Boston Children's Hospital, Desmond Tutu HIV Foundation, and the Aerosmith Endowment Fund for Prevention and Treatment of AIDS and HIV Infection.

Produced by the participants, in collaboration with Lisa M. Butler, Betsy Kammerer, Leonie Marinovich, David C. LaChapelle, Greg Marinovich, Nomagcwanini Nokwe, and Laura Myers. With special thanks to Linda-Gail Bekker, Ingrid Katz, Adam Cassidy, Eve Mendel, Jacqui Dallimore, and Sipho Mpongo.

Participants’ Stories

Each story was finished in the USA, based on the teens’ storyboards and voice-overs recorded in South Africa. They viewed and approved the videos before they were released publically, except for one of the participants who was fearful of being identified in his community.

Enzokuhle (19) wanted to tell her grandmother how much she loves her and thank her for raising her and her sister. Her faith is important to her and forms the cornerstone of this homage to her grandmother, fondly called "Mama".

Esihle (19) is of Zimbabwean descent. She first started taking Antiretroviral treatments when she was 6 years old. Her family knew that she was born with HIV, but she was only told about her status at the age of 14.

Nceba (16) aspires to be an actress. Her mother is very supportive of this ambition. Nceba's been living with HIV since birth and started taking ART when she was 4 years old. She had great difficulty in swallowing the big pills and most of the time she couldn't keep them down. With help from medical staff, she and her mother came up with a solution that would help her keep the medication down.

Boxing has helped Ntando (14) manage his anger. That and the support and company of his best friend. He stopped taking his antiretroviral medication as a response to the anger and frustration he felt at not being able to see his mother before she passed away when he was in grade 5. He's now taking his medication again because he wants to remain healthy so that he can take care of his younger siblings.

Thandiwe (19) has an amazing voice and singing is one of the family's favourite pastimes. Thandiwe's mother passed away when she was only 3 years old and since then her grandmother has been her main caregiver. According to Thandiwe she is unable to resist any of her demands and loves to spoil her.

Xolani (16) was diagnosed with HIV at the age of 1 year and 7 months. He was eventually told about the diagnosis at the age of 10, and his mother passed away a few years later from an HIV-related illness. Xolani has a remarkably positive attitude about living with HIV, saying that if he wasn't taking his antiretroviral medication, he'd constantly be sick and not able to help his grandmother manage the household.

Zintle (18) had been experiencing issues with her skin which prompted her to seek medical help. The doctor encouraged her to take an HIV test. Living with HIV is not a problem, but sharing that news with her friends is something she can't bear thinking about.

Buhle (17) was born in Cape Town but was sent to live with her grandmother in the Eastern Cape province of South Africa until the age of 7 when her older sister came to fetch her. She feels confused and angry at her mother for exiling her from the family home and still grapples with understanding the family dynamics.

Nande's (18) primary concern was how to tell her best friend that she has HIV. She didn't want to take her antiretroviral treatment in front of her. In her video, she summons up the courage to share her status with her friend.

* Armstrong A, Nagata JM, Vicari M, et al. A Global Research Agenda for Adolescents Living With HIV. J Acquir Immune Defic Syndr 2018; 78 Suppl 1: S16-S21.