In Uganda, strengthening a partnership against cancer

A ‘compelling and inspiring visit’ yields renewed commitment by Fred Hutch, Ugandan leaders
Fred Hutch's Dr. Gary Gilliland and UCI's Dr. Carol Nakisige
Fred Hutch President and Director Dr. Gary Gilliland and Dr. Carol Nakisige, a UCI gynaecologist and obstetrician, confer at the UCI-Fred Hutch Cancer Centre in Kampala, Uganda, in November. Photo by Jiro Ose / for Fred Hutch News Service

Uganda will increase funding to its public cancer institute by 25 percent after government officials met in the capital, Kampala, with Uganda Cancer Institute Director Dr. Jackson Orem and Fred Hutchinson Cancer Research Center President and Director Dr. Gary Gilliland and Senior Vice President Dr. Julie McElrath.

Fred Hutch has partnered with the UCI for more than a decade. What began as a small research collaboration has grown to include training and outpatient clinical care in a new, 25,000-square-foot UCI-Fred Hutch Cancer Centre, which opened in May 2015.

It was Gilliland’s first visit to the site, which he described in a meeting Thursday back in Seattle with Fred Hutch’s Global Oncology staff as a “state-of-the-art facility as good as anything we have here” in the United States.

Dr. Charles Babutunga, Leticia Nakayenga and Brenda Nakimera
The UCI's Dr. Charles Babutunga examines Brenda Nakimera, 9, as her mother Leticia Nakayenga looks on at the UCI-Fred Hutch Cancer Centre. Photo by Jiro Ose / for Fred Hutch News Service

But Gilliland reserved his highest praise for the alliance’s Ugandan physicians, nurses and other clinicians he met, many of whom have trained in Seattle or in alliance programs in Kampala.

“To see the dedication and devotion of healthcare professionals in caring for those patients under difficult conditions was compelling and inspiring,” he said. “It was a stark reminder of how important it is to try to have an impact.”

UCI Director Dr. Jackson Orem
Uganda Cancer Institute Director Dr. Jackson Orem meets with UCI and Fred Hutch researchers at the UCI-Fred Hutch Cancer Centre. Photo by Jiro Ose / for Fred Hutch News Service

It was in an effort to improve those conditions that Gilliland, McElrath and Orem met in mid-November with Uganda Prime Minister Ruhakana Rugunda, Speaker of Parliament Rebecca Kadaga, Minister of Health Jane Ruth Aceng and State Minister of Finance for Planning David Bahati to urge more attention to cancer, which is a leading cause of disability and death worldwide. According to the World Health Organization, more than 60 percent of new cases occur in low- and middle-income countries in Africa, Asia and Central and South America, which also account for 70 percent of cancer deaths.

Gilliland called the government’s promised $1 million increase “a move in the right direction.” He noted that the UCI’s yearly budget is just $4 million.

“It’s almost unimaginable that they’re able to accomplish what they do with that kind of budget,” he said.

Spending on cancer care in the United States is about $157 billion, according to the most recent estimates from the National Cancer Institute

Fred Hutch's Dr. Warren Phipps
Dr. Warren Phipps, the UCI-Fred Hutch alliance's Kampala-based medical director, gives a presentation at a UCI-Fred Hutch Cancer Centre science symposium in November. Photo by Jiro Ose / for Fred Hutch News Service

Much of Uganda’s overall health care budget is subsidized by donor countries and nongovernmental organizations, but these donations focus mostly on infectious diseases such as malaria and HIV/AIDS. 

“While donor funds to address cancer have been slow to materialize, the government of Uganda is making the choice to put its own money toward cancer because they know it’s important and also because they value Fred Hutch’s role as a partner,” said Sarah Ewart, managing director of Fred Hutch Global Oncology.

Gilliland also praised as “terrific progress” the passage of a bill, which is awaiting official publication, that gives the UCI semiautonomy over spending on drugs and other needs.

Accomplishments — and challenges

Diana Lubega
Diana Lubega, a histology technician, inspects a tissue sample at the UCI-Fred Hutch Cancer Centre. Photo by Jiro Ose / for Fred Hutch News Service

Conditions have improved since the alliance’s beginning, when the UCI had a single oncologist.

Since 2008, when the partnership was formalized, 14 Ugandan physician-scientists have come to Seattle on fellowships to study at Fred Hutch and the University of Washington and returned to Uganda to treat patients and do research.

The research program now includes Kaposi sarcoma, Burkitt and other non-Hodgkin lymphomas, cervical cancer, breast cancer and Hodgkin lymphomas. About 30 projects have been completed, and more than 7,000 Ugandans have taken part in studies.

Private grants allowed the alliance to add some clinical care to research and training, starting with a pilot project on Burkitt lymphoma, with innovations that are being adopted by other UCI teams.

Jane Nakazbune, Lydia Namagaina, Juliet Nakato
Jane Nakazbune, middle, who is suffering from cervical cancer, sleeps in a tent set up in a parking lot while she receives treatment at Uganda Cancer Institute in Kampala, Uganda.She is being cared for by her daughters, Lydia Namagaina, left, and Juliet Nakato. Some patients from outside Kampala cannot afford their accommodations and sleep in the tent set up as an extra waiting area for the patients . Photo by Jiro Ose / for Fred Hutch News Service

But the challenges that remain are substantial.

The ratio of physicians to patients is still a staggering 1 to 100. The government pays for medications, but shortages of funding and drugs are common. The country’s single, aging radiotherapy machine finally broke down last spring and won’t be replaced until a new bunker can be constructed to house it at the UCI inpatient hospital, hopefully by spring.

In addition, the patients seeking treatment at the UCI are often desperately ill, having delayed care because of poverty or lack of understanding of cancer until their cancers are far advanced.

Gilliland and Rugunda
Fred Hutch President and Director Gary Gilliland and Prime Minister of Uganda Ruhakana Rugunda shake hands after meeting on November 15, 2016. Photo by Jiro Ose / for Fred Hutch News Service

Asked his impressions of the visit, Gilliland — who is a physician as well as a scientist — described the most advanced case he had ever seen of Kaposi sarcoma, a cancer that begins in the lymphatic system or blood vessels and can appear as lesions on the skin. In this case, the lesions covered the patient’s entire leg.

Yet he also said, “I was really struck by how there’s almost a joy in the people working there, trying to do the best they can … It’s a real spirit of wanting to get in there and make a difference.”

‘We’ve got a lot ahead of us’

McElrath, who oversees the Global Oncology program as director of the Hutch’s Vaccine and Infectious Disease Division, was last in Kampala when the new building opened with much fanfare and celebration in 2015.

Drs. Gary Gilliland and Julie McElrath at UCI-Fred Hutch Cancer Centre in Kampala
Drs. Gary Gilliland, Fred Hutch president and director, and Julie McElrath, senior vice president and director of the Vaccine and Infectious Disease Division, speak to the UCI-Fred Hutch Cancer Centre staff in Kampala. Photo by Jiro Ose / for Fred Hutch News Service

This time, she said, “was much more captivating because you could walk into the facility and see the work with patients. The vision we’d had in building the facility is being realized.”

McElrath credited Dr. Corey Casper, the alliance’s founder and first co-director, for establishing the training programs. “It’s a smart, committed group of physicians and staff that we can look forward to working with over the long term,” she said.

The four-day visit included an afternoon scientific symposium in which Ugandan researchers presented research on Kaposi sarcoma, cervical cancer and lymphoma and discussed research opportunities and priorities for collaboration. McElrath is working to engage oncologists, epidemiologists and other researchers across the Hutch in the program, which began with an emphasis on infection-associated cancers. Preliminary planning has begun on clinical trials to bring new treatments, including immunotherapies, to Ugandan patients.

Like Gilliland, McElrath said that she was moved by “the sheer energy and enthusiasm” of the Ugandan team. She also praised the researchers and staff members who collaborate, strategize, advise and troubleshoot from Seattle.

“We’ve got a lot ahead of us,” she told the Global Oncology staff. “We have opportunities — demonstration projects — that will really allow us to go the next step and improve care. We understand this takes a team. This work would not be possible without each of you here.”

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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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