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The Guardian - UK
The Guardian - UK
World
Isabel Choat in Kampala and Mbarara

‘It’s not just about dying’: Uganda’s pioneers of palliative care undaunted by huge challenges

Alex Mubiru, who has Aids and Cancer, waits at home in Wakiso, to receive care from volunteers at Hospice Africa Uganda, 31 January.
Alex Mubiru, 31, who has Aids and cancer, waits at home in Wakiso, to receive care from a Hospice Africa Uganda nurse. All photographs: Badru Katumba/The Guardian Photograph: Badru Katumba/The Guardian

Alex Mubiru shuffles out of the bare-brick bedroom that he shares with his brother and two nephews. Weakened by Aids and cancer, he spends his days lying on a thin mattress in the dark, but nurse Roselight Katusabe is here to check on him so he is helped by his girlfriend, Florence, into the cramped front room of his mother’s house in Wakiso village.

Since he was diagnosed in October with Kaposi’s sarcoma, a type of skin cancer that is common in people who are HIV positive, Mubiru’s health has deteriorated rapidly. Katusabe is concerned that his laboured breathing could be a sign the cancer has spread to his lungs, but the family can barely afford food, let alone £200 for the tests needed for him to start chemotherapy at the Uganda Cancer Institute, about 15km away in the capital, Kampala. The crops that his mother planted to provide for the family were stolen in December. Mubiru, a 31-year-old father of three, says simply: “I want to go to work again.”

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