A Ugandan-born woman diagnosed with HIV in 1988 who went back to Africa to die, arrived in the UK with a CD4 count of one, and built a career spanning 20 countries in African health policy.
Summary
Winnie Sseruma left Uganda on a scholarship to study sociology in Kansas in 1981. The students there asked her if she lived in a tree. By 1988, she was 27, back in the United States, and applying for an internship that required an HIV test. It came back positive. She told her partner, who blamed her, ghosted her, then called back weeks later to say his own test was negative. After that, Winnie stopped telling anyone. She sat through conversations where friends described how they'd treat an HIV-positive person - never eat in their house, never share a bathroom, never be friends - and said nothing.
She was offered AZT, which she couldn't afford. The side effects turned her skin from shiny black to ashy. Between 1990 and 1993, her brother, her mother, and her father all died while she was trapped in the US. In 1994, she packed six months' worth of medication and flew to Uganda to die. When the pills ran out, she got TB, pneumonia, and diarrhoea. She nearly died, but a short trip to the UK saved her. At Newham General Hospital, her CD4 count was one.
A Ugandan woman she'd met only briefly invited her to a place to socialise. It was a support group for people living with HIV. Winnie could see herself in the women there. She went from preparing to die to learning how treatment works - and it was, in her word, invigorating. She co-founded the African HIV Policy Network, chaired it from Parliament, co-wrote Our Stories Told by Us, and now monitors health programmes across 20 African countries for the Stephen Lewis Foundation.
Key Moments
- [02:05] Kansas, 1981 - a scholarship, a culture shock, and students who thought Ugandans lived in trees
- [07:05] The positive result - an internship test in 1988, a death sentence at 27, and a life flashing before her eyes
- [08:58] Telling a partner - blame, rejection, being ghosted, and the lesson that disclosure was not safe
- [11:49] Conversations she sat through - friends describing how they'd never eat in the house of someone with HIV, while Winnie stayed silent beside them
- [12:37] AZT and its costs - paying for medication with no insurance, vomiting the pills back up, and a treatment that changed her skin colour
- [17:02] Four deaths in four years - a brother in 1991, a mother in 1990, a father in 1993, all from Uganda while Winnie couldn't leave the US
- [17:52] Going back to Uganda to die - six months of medication, then TB, pneumonia, and a CD4 count of one at Newham General Hospital
- [21:33] The Ugandan woman and the support group - an invitation framed as socialising, a room full of women telling their stories, and the moment Winnie stopped being alone
- [26:07] The African HIV Policy Network and Fed Up - supporting African women with HIV to engage with policy, and fighting a UK Department of Health that treated an entire continent as one community
- [39:54] Our Stories Told by Us - a book co-written with four friends to change the narrative about African communities and the UK HIV response
- [42:41] Remembering her brother - a gentle giant who died of HIV-related TB in 1991 at 27, the same age Winnie was when she was diagnosed
Dedication
Winnie remembers her brother, who died of HIV-related TB in 1991 at the age of 27 - the same age she was at diagnosis. She wants him to know he was loved.
About Winnie Sseruma
Winnie Sseruma was born in Sheffield and raised in Uganda. She was diagnosed with HIV in 1988 in the United States. She co-founded the African HIV Policy Network, chaired it from Parliament, and co-wrote Our Stories Told by Us: Celebrating the African Contribution to the UK HIV Response. She works across 20 African countries monitoring health programmes for the Stephen Lewis Foundation.
Resources
If you have been affected by the themes in this episode, support is available at tht.org.uk.
This podcast uses the following third-party services for analysis:
Podtrac - https://analytics.podtrac.com/privacy-policy-gdrp
