‘I pray that God will help me’: Treating Kaposi sarcoma in Uganda

Researchers are partnering to better understand infection-related cancers
Sarah Nabaggala
Sarah Nabaggala, a 28-year-old mother of two undergoing treatment for Kaposi sarcoma at the Uganda Cancer Institute in Kampala, Uganda, was photographed May 15, 2015. “My body is very weak,” she said. “Sometimes I’m very ill – I’m so ill I get scared.” Photo by Robert Hood / Fred Hutch News Service

Editor's note: Fred Hutch News Service writer Mary Engel and photographer Robert Hood were in Uganda for the May 21 grand opening of the UCI-Fred Hutch Cancer Centre. To read more of Mary and Robert's stories from Uganda, please click here.

KAMPALA, UGANDA — When Sarah Nabaggala first noticed itchy brown spots on her skin, she thought she might have malaria, which is common in her tropical home city of Entebbe, Uganda. After a blood test proved negative, she went to a skin clinic where doctors did a biopsy. The bad news came by telephone.

“They gave me a call and said I had skin cancer,” Nabaggala, 28, said Friday from her bed at the Uganda Cancer Institute, or UCI. “They sent me here.”

What Nabaggala called skin cancer was actually Kaposi sarcoma, a cancer that begins in the lymphatic system or in blood vessels and can appear as lesions on the skin, in the mouth, nose or throat and in the lungs and gastrointestinal tract. It is one of the nearly 20 percent of cancers worldwide caused by infectious pathogens, in this case human herpesvirus 8, or HHV-8.

Scientists are still working to untangle the relationship between infections and cancer, which is what led researchers at Fred Hutchinson Cancer Research Center to set up an alliance about 10 years ago with the UCI. Kaposi sarcoma was the focus of the very first research grant.

One visit to the UCI, and it’s not hard to see why Seattle researchers would travel halfway around the world to study this disease in Uganda. The small East African country has one of the highest cancer rates in the world, and six in 10 are infection-related. 

Kaposi sarcoma is the second most common cancer in adult men, after prostate cancer, in Uganda, said Dr. Solomon Kibudde, a Ugandan physician in his sixth year at the UCI. It is also a common cancer among women, after cervical cancer (another infection-related cancer caused by certain strains of the human papillomavirus) and breast cancer.

Driving the high numbers is the HIV/AIDS epidemic. People with AIDS are vulnerable to infection-related cancers because HIV, the virus that causes AIDS, attacks their immune systems, leaving them unable to fight off other infections.

In the United States in the 1980s and early 1990s, the once-rare Kaposi sarcoma became a hallmark of the AIDS epidemic. It has since become rare again in the U.S. as antiretroviral drugs have kept HIV in check.

That’s not, unfortunately, the case in Uganda, despite gains made in increasing the number of people with HIV who are on lifelong medication. Only about half of those who need antiretroviral treatment receive it, and many start it later after diagnosis than those in the U.S. and don’t stay on it continuously.

Another difference, striking in the UCI ward, is that Kaposi sarcoma — like HIV/AIDS — is even more common among women than men in Uganda. In sub-Saharan Africa, HIV is spread predominately by heterosexual sex. In 2013, almost 60 percent of all new HIV infections among young people aged 15–24 occurred among adolescent girls and young women, according to the Foundation for AIDS Research.

Nabaggala, the mother of 9-year-old Nicholas and 2-year-old Anisha, was first referred to the UCI in March 2013 and underwent chemotherapy. Now the cancer has spread to her lungs. She was having trouble breathing, and has not been able to keep up her work selling second-hand clothing. Nabaggala and her husband are separated; his mother is tending the children while her younger sister stays at the hospital with her.

“My body is very weak,” she said, her eyes enormous in her small face. “Sometimes I’m very ill — I’m so ill I get scared.”

The prognosis for Kaposi sarcoma is fair, said Kibudde, the UCI physician, and excellent if the patient is receiving good HIV care. But too often, that is not the case. Sometimes patients only learn that they have HIV when they get diagnosed with Kaposi sarcoma — and it is already advanced. Other times, patients can be treated at an HIV clinic for months without being referred for chemotherapy to treat their cancer lesions.

The UCI-Hutchinson Center Cancer Alliance is helping to coordinate the launch of Uganda’s first integrated HIV-cancer clinic this summer, said Dr. Warren Phipps, a Kampala-based Fred Hutch researcher and medical director of the alliance. Funded by Walter Reed Hospital and the U.S. President’s Emergency Plan for AIDS Relief, or PEPFAR, it will be housed in the new UCI-Fred Hutch Cancer Centre, which will officially open next Thursday.

“So many people come in [to the UCI] with an AIDS-associated cancer,” Phipps said. “Antiretroviral therapy is a critical part of their cancer treatment.”

Queen Mwamin
Queen Mwamin, 22, is undergoing treatment for Kaposi sarcoma. She was photographed at the Uganda Cancer Institute in Kampala, Uganda on May 15, 2015. Photo by Robert Hood / Fred Hutch News Service

Queen Mwamin, 22, is one such patient. Like Nabaggala, she was tethered to an oxygen line and too weak to leave her bed; her Kaposi sarcoma has spread to her lungs. In the year since she has been diagnosed she’s already been through three rounds of chemotherapy, six cycles in each. She’d thought the cancer was under control, but around Easter, her legs became painfully swollen.

Now the Tanzanian native was back at the UCI, tended lovingly by her husband, mother and mother-in-law.

“I just pray that God will help me,” she said.

Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.

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