Building a legacy of hope

A Fred Hutch doctor changes cancer care in Uganda – and Uganda changes him
Dr. Corey Casper
Dr. Corey Casper listens to Dr. John Abima, head of the clinical lab at the Uganda Cancer Institute, in Kampala, Uganda on July 21, 2014. By Robert Hood / Fred Hutch News Service

A big red sun was rising over Lake Victoria, the largest of Africa’s Great Lakes, when Dr. Corey Casper arrived in Uganda for the first time. Eleven time zones and 22 hours by plane from Seattle and his work at Fred Hutchinson Cancer Research Center, Casper stood on the airport tarmac, the red-earth hillsides aglow in the dawn light, the air redolent with cooking fires, and thought to himself, “This is something very, very different.”

Different was what Casper was looking for when he traveled to Uganda to explore research possibilities, even if he didn’t yet know what, exactly, he was seeking. It was 2004, and the young infectious disease physician and scientist had been questioning whether his work on HIV-related cancer would have enough impact, especially since such cancers were declining in the United States as antiretroviral therapy revolutionized AIDS treatment. What more, he’d wondered, could he contribute?

He found an answer two days later when he visited the Uganda Cancer Institute in the country’s capital, Kampala.

Click to view scenes from the Uganda Cancer Institute / Fred Hutch partnership in Kampala.

Dr. Edward Katongole Mbidde, the sole oncologist in the only cancer center in a country of some 30 million people, gave him a tour. Patients, most in late stages of cancer, far outnumbered beds in the crowded wards and spilled out into the red-dirt courtyard. The low-slung buildings were patched and crumbling.

Mbidde took him into a tiny room filled with 40-year-old freezers for storing tissue samples. Stenciled onto the rusted doors were the names of institutions from around the world, all of which had collaborated, at one time or another, with the UCI but now had largely moved on to other projects in other places.

“You’re welcome to come here,” Casper recalled Mbidde saying. “But don’t let this be your legacy.”

Today, Casper, now 44, is head of Fred Hutch Global Oncology and co-director of a decade-long alliance with the UCI that the National Cancer Institute holds up as a model for research, training and patient care in low-income countries. In an interview in his office at Fred Hutch’s Seattle campus, shortly before World Cancer Day on Feb. 4, he reflected back on that day in the freezer room when the partnership began.

“My first thought was, ‘What makes you think you could do anything better?’” he said. “My second thought was, ‘What if your legacy in working here was more than just another rusty freezer?’”

The path forward

Born and raised in New York, Casper began his medical training there in the early 1990s. It was before life-saving antiretrovirals, and almost every patient admitted with AIDS was dying. Many of them had Kaposi sarcoma (KS), a once rare cancer that had become an AIDS hallmark. In his last year of medical school, a trip to Haiti, hard-hit by AIDS and KS, deepened his interest in HIV-related cancers.

A few years later, human herpesvirus-8 (HHV-8) was found to cause KS; people with AIDS were vulnerable because HIV, the virus that causes AIDS, attacked their immune systems, leaving them unable to fight off other infections. When Casper came to Fred Hutch in 2000 to do an infectious disease fellowship, he focused his research on how HHV-8 caused cancer. But by then KS was becoming rare again as antiretroviral drugs kept HIV in check.

Even before traveling to Kampala, Casper had come across papers from UCI researchers on KS in Uganda, which, like the rest of sub-Saharan Africa, was ravaged by AIDS and did not yet have access to antiretroviral drugs. Then a former mentor at the University of California-San Francisco, where Casper had done his residency, put out word that he was opening an HIV center in Kampala.

It was the opening of that center that brought Casper to Uganda in 2004. But it was his visit to the UCI that compelled him to return.

A New Yorker in Uganda

Casper returned to Uganda to set up a research alliance between Fred Hutch and the UCI, funded by a small Hutch grant – about $13,000 was available to support the activities on the ground. He carried much of it in cash, rolled up in socks stashed in his suitcase; few places in Kampala accepted credit cards or had ATM machines.

By 2005, he had a new partner, Dr. Jackson Orem, an esteemed cancer researcher who trained at Makerere University in Kampala and Case Western Reserve University in Cleveland, Ohio, and who replaced Mbidde as UCI director. He also secured another, highly competitive grant from the Doris Duke Charitable Foundation. 

Receiving the grant was a pivotal moment when he realized he could go beyond a part-time research project on Kaposi sarcoma to a broader look at a global scourge. Cancer, he was learning, is among the most common health threats in Uganda, causing more deaths in low- and middle-income countries than malaria, tuberculosis, and HIV combined. Yet few governments, organizations, or scientists were aware of this, much less working on research, prevention or treatment.

“And by that point,” Casper added, “I’d come to really love Uganda and my Ugandan colleagues.”

He’d also begun to grapple with just how different working in Uganda was from working in Seattle, especially for a self-described die-hard New Yorker.

“New York is a city where everything happens,” he said, snapping his fingers for emphasis. “I’m someone who is excited about what I do, I’m visible about that, I’m not subtle.”

If the stereotypical New Yorker is passionate, opinionated and filled with urgency, Ugandans, this New Yorker learned, were patient and polite. Relationships were primary: They didn’t stride into a room and get down to business but exchanged greetings and pleasantries. No one liked to say no directly.

“The combination of New York urgency with Ugandan patience can be a little bit like oil and water,” he said.

Ask Casper about the learning curve across cultures, and he draws a roller coaster graph popular among those studying change in organizations. First there’s the straight-up line called uninformed optimism: The new job may still be a mystery, but it’s really exciting. Then comes a phase called informed pessimism, and the line plunges. (“It’s like, whoa, how am I ever going to do anything?” Casper said.) Then – hopefully – comes a rebound and a gradually rising line of informed optimism.

Casper actually had his first dip on the same day as the optimistic airport sunrise. Jetlagged from his long flight, he attended the opening of the HIV center complete with a four-hour speech and more hours of pomp and circumstance in the tropical heat. “Maybe this isn’t for me,” he’d thought at the time, but rebounded.

The real crash came four years in. The Fred Hutch partnership with the UCI began as a pilot program in 2004 and was formalized in 2008. That’s a lifetime in New York years, but the reality on the ground still felt overwhelming.

“Oh my goodness, all the statistics,” Casper said. “There were nine oncologists for all of sub-Saharan Africa. There were 100 million people [in the region surrounding Uganda] coming to one cancer center that had one oncologist, no roof, no running water, no drugs. What was I going to do?”

And then there was the years-long effort to build a new facility.

Informed pessimism

Early on, Dr. Larry Corey, at the time Casper’s program director as head of the Vaccine and Infectious Disease Institute, had urged Casper to work to replace the hodgepodge of stucco-walled structures that had served as Uganda’s only cancer treatment center for more than 40 years.

“A new building was required if we were to do first-class research and to alter the context upon which global oncology was perceived,” said Corey, today Fred Hutch president and director emeritus. “We needed an outward symbol that cures could be achieved in Africa, that we were not there for palliation. We needed to do what was done for HIV for cancer.”

Casper agreed that a new building was essential to high-quality research, effective care and proper training.

But before the building could move forward, he encountered a major roadblock: Securing the land on which to build it. No one could give permission to build on the parcel because, under Uganda’s complex property laws, no one knew who owned it.

“It took us two years just to figure out who owned the postage stamp on which to build this new building,” he said. “Here, you go downtown and do a title search. You can’t do that in Uganda. Without a title or a promise that we could build on this land, we could do nothing.”

At his lowest point, he walked out of a UCI meeting and called Larry Corey to say he couldn’t do it any more.

“I was standing in the courtyard, in the middle of all these patients on their blankets and their families, and wailing, and goats running around, and I’m like, ‘I’ve had it. I’ve given every ounce of my soul to this program, and not enough is happening,’” Casper recalled.

It was around noon Kampala time — 1 a.m. for Larry Corey back in the U.S. But he answered the phone and counseled patience.

“Larry, listen, there are people dying literally all around me,” Casper told him. “I’m not a patient man. I’m a New Yorker.”

“Well, harness that,” Casper recalled Corey saying. “Figure out a way to take it incrementally because it isn’t going to happen all at once.”

With that, Casper’s informed pessimism bottomed out. Slowly, patiently, small step by small step, he started back up.

‘A huge cultural shift’

One of the first steps Casper took after that was to add training to the research partnership, working with Orem and a growing number of colleagues in both Kampala and Seattle.

“It seemed to me that one thing I could do immediately was train another oncologist,” he said. “There was only one [in Uganda] and we needed more. Wouldn’t it be a great victory if instead of nine oncologists in all of the sub-Saharan African continent, there were 10? When I’d get up at night and say things aren’t where I wanted them to be yet, at least I could say that.”

So the UCI-Fred Hutch alliance offered fellowships to young Ugandan doctors to study at Fred Hutch and the University of Washington with the goal of returning to the UCI to treat patients and do research. Where there was once only one oncologist at the UCI, now there are more than a dozen physicians, eight of them Hutch-trained oncologists. Another 300 Ugandan scientists and 40 Ugandan doctors have undergone shorter trainings in Kampala.

Private grants allowed the alliance to add clinical care to research and training, starting with a pilot project on Burkitt lymphoma, the most common cause of childhood cancer deaths in equatorial Africa. A cancer of the immune system first identified in Uganda in 1958, Burkitt lymphoma can kill so quickly that a diagnosis is treated as an emergency. The cancer is treatable with chemotherapy, but delays of even a few weeks in seeking care mean that many patients aren’t seen until the disease is in its late stages.

“We can’t treat every patient at UCI,” Corey thought at the time, “but what if we treated every kid with Burkitt lymphoma?”

The project’s innovations include speeding diagnosis, assigning case managers to help families navigate care and counseling families on proper nutrition. Because many are too poor to travel to Kampala for treatment, the program also subsidizes transportation. Since 2012, the Burkitt Lymphoma Project has doubled survival rates, from about 30 percent to 64 percent.

“Taking off smaller, bite-sized pieces and having the patience to be OK with that has been a huge cultural shift for me from wanting everything tomorrow,” Casper said. “It’s a wonderful life lesson.”

In addition, the research program continued and 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.

With growing recognition that infections are associated with nearly one-quarter of cancer cases around the world, Uganda, with its high rate of infectious cancers, is an ideal place to study why a virus leads to cancer in some people and in some parts of the world but not in others. Research there is also contributing to a better understanding of the basic principles of cancer biology, promising advances in knowledge, Casper said, that will help people both in Uganda and the United States.

And the building?

With deft land negotiations by the Hutch’s Banks Warden, Erica Sessle and others and with funding provided by Fred Hutch and the U.S. Agency for International Development, Casper, Orem and the alliance broke ground in 2011 for the Uganda Cancer Institute/Fred Hutchinson Cancer Research Center Clinic and Training Institute, the first comprehensive cancer center jointly built by U.S. and African cancer institutions in sub-Saharan Africa. It is scheduled to open in May.

'We've infected them with hope'

Casper – not surprisingly – is the first to say that much more remains to be done once the building opens. But he also now believes – with optimism informed by small, steady steps – that the war against cancer in developing countries is winnable and that the lessons learned in Uganda can be applied to other parts of the world.

“Survival for some cancers is always going to be better than others,” he said. “But closing the cancer divide would mean it wouldn’t matter where you live.”

One of the drawbacks of his frequent travel is time away from his wife, Thérése, a Seattle transportation planner, and their 10-year-old daughter Delphine. Just 5 when she made her first trip to Kampala, Delphine quizzed her dad beforehand about what children did at the UCI while waiting for treatment. Told they mostly sat and waited, she replied, “Well, they need toys.” So she organized a drive to put together 300 “fun packs” of drawing paper, crayons and stuffed animals. Like father, like daughter.

Casper’s own sense of urgency, although still there, has taken on a Uganda patina. On the ground in Kampala, he as often as not stands back and lets others speak. He tends to relationships before business and enjoys a teasing relationship with colleagues such as Allen Naamala Mayanja, the UCI’s head nurse.

“He is generous and outgoing,” said Sister Allen during one of his trips last summer, adding how pleased she was when he offered help on a study she was starting.

Perhaps Isma Lubega, the driver for the UCI-Fred Hutch alliance, paid Casper the ultimate compliment: “When he’s here, he’s very Ugandan,” Lubega said. “He’s very down to earth. He interacts with everyone. He’s humble.”

If the New Yorker is becoming more Ugandan, the alliance with Fred Hutch is also affecting the culture of the UCI. Casper’s colleagues there had always been incredibly dedicated and hard-working; a surprising number started as volunteers when there was not even enough money for salaries. But what Casper had found challenging early on was turning around a sense of resignation, born of years of trying to address unimaginable needs with inadequate resources.

“I get that. I understand why people feel that way,” he said. “But it seems to set you up for perpetuity that things will always be that way.”

That's no longer the case. The UCI used to run out of disposable medical gloves the same day they were delivered — and have to wait a week for the next delivery. When Dr. Victoria Walusansa became the first UCI doctor to complete a Fred Hutch fellowship, she returned to the UCI and said, “We’re going to change that.”

Or take Dr. Innocent Mutyaba, Burkitt Lymphoma Project coordinator and a Fred Hutch trainee. Never mind that the project had cut death rates by half for children with Burkitt lymphoma.

“Survival is better, but not where we want it to be for a cancer that is highly curable,” Mutyaba said. So the researchers are going back to look at whether clinicians are diagnosing and staging the cancers correctly.

Such responses have helped Casper hew to the path of informed optimism.

“I know that [Uganda] changed me,” he said. But he didn’t at first recognize the extent to which the alliance was changing his Ugandan colleagues.

“When we bring the trainees here and when we bring additional resources and show what could be possible, people are no longer satisfied with the way it’s always been,” he said. “It’s like a subtle infection. We’ve infected them with hope.”

Dr. Corey Casper explains the challenges of cancer care in low-resource countries.

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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