Thousands of cancer patients in Uganda still lack access to basic pain relief medication. Alex Mubiru (pictured) is a cancer patient who receives care from Hospice Africa Uganda. (Badru Katumba, The Guardian)
Morphine was first introduced to Uganda 30 years ago, but as the burden of cancer increases, thousands of people still lack access to even basic treatment or pain relief.
The Ugandan government cannot fulfil its responsibility to provide end-of-life care for its people. Now, a hospice organisation that has been picking up the slack is running out of money too.
Meet the health workers doing what they can to provide a good death for cancer patients at the end of their lives.
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 (R4 415) 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.”
Without treatment, the prognosis for Mubiru is not good. Katusabe does her best to ease his pain, giving him morphine and antibiotics for an infection, and a package with maize flour, beans, rice and sugar. As well as providing vital nutrition, the food means he can take antiretrovirals for HIV without severe side effects.
Mubiru’s situation is typical of the cases that Katusabe and her colleagues at Hospice Africa Uganda (HAU) deal with on a daily basis — and it indicates the huge challenge facing the pioneering palliative care organisation.
About 70% of the 2 000 patients on HAU’s programme have cancer, and some are HIV positive, too. Few can afford tests or treatment for their conditions and, even when they can, it is not uncommon for doctors to misdiagnose or fail to prescribe adequate pain relief. Often, by the time a patient is referred to HAU, their condition is incurable, much to the frustration of the team, whose goal is to offer palliative care from the moment a person is diagnosed with a life-limiting condition.
“One of our biggest challenges is to remove the stigma [around palliative care]. Some people think it is about dying, but it is for anyone with a chronic illness that is not going away,” says Antonia Kamate Tukundane, programmes manager at HAU’s Mbarara site in southwest Uganda. “Palliative care focuses on holistic care: How are you? How is your family? What other things are affecting your illness? We provide something the doctors and nurses have no time for.
“Sometimes the patient comes to us very ill and passes on, but if we had known the patient earlier we could have explained what was happening to their body; agreed on realistic goals; all this is so helpful for the patient. Those who find us are glad they did.”
HAU was founded in 1993 by Irish doctor Anne Merriman, who still lives in Kampala, though, at 87, has stepped back from the day-to-day running of the organisation. Today, HAU is run by a team of just over 70 health professionals and admin staff across three city sites: Kampala, Mbarara and Hoima in the west, and is a model for palliative care not just in Uganda, but across Africa.
In 1993, HAU became the first organisation to introduce oral liquid morphine into Uganda after persuading the government the risk of addiction was extremely low. Dr Merriman, who had developed a formula while working in Singapore, made it herself “at the sink with a bucket”. “It’s as easy as making coffee, just four ingredients: morphine powder, a preservative, PH stabiliser and water. And it’s cheap too,” she says.