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A boost from Boston in Rwanda’s cancer fight

By Helen Shen
Globe Correspondent / July 18, 2012
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In Rwanda, a country with not a single cancer specialist, 5-year-old Umulisa Husna Rutagengwa was lost. For months, she bounced among hospitals, as doctors searched for the cause of her fatigue, fever, and pain. Finally, they had an answer: leukemia.

More than 80 percent of children with her type of leukemia survive in the United States. In Rwanda, the disease is almost always fatal.

But last week, Husna and her pediatrician, Dr. Molly Jo Moore, rode with new hope over dusty, unpaved roads to Butaro Hospital, where the first cancer ward in rural East Africa was opening with a big helping of Boston medical know-how.

“I think we will all feel better that Husna is here,” said Moore, a Boston Children’s Hospital physician working in Rwanda with the global health nonprofit Partners In Health.

The Butaro Cancer Center of Excellence is being dedicated Wednesday, with former president Bill Clinton and NASCAR driver and major donor Jeff Gordon expected to be on hand. Organizers of the project, which include the Rwandan ministry of health and the Boston-based Partners In Health and Dana-Farber Cancer Institute, hope the only specialized cancer facility in the country can serve as a model for addressing the rapid rise of cancer in the developing world.

International health organizations have long targeted infectious diseases such as cholera, tuberculosis, malaria, and HIV/AIDS that plague impoverished countries. But as these diseases are increasingly brought under control and people live longer, cancer and other chronic illnesses loom as a new challenge.

Studies by the International Agency for Research on Cancer indicate that global cancer incidence is rising rapidly, with developing nations hit especially hard. Yet many governments and aid agencies lack the resources and expertise to tackle a disease as complex to diagnose and treat as cancer.

“We’re fighting a lack of optimism,” Dr. Paul Farmer, cofounder of Partners In Health, said in an interview last week. “There’s so much cancer in the developing world, and we don’t have a plan to treat it.”

Partners In Health has worked before with Dana-Farber to treat individual cancer patients in Rwanda, but the Butaro center, in the northern part of the country, will be the first to offer comprehensive care — including diagnosis, chemotherapy, surgery, follow-up treatment, and palliative care.

Dr. Benjamin Anderson, director of the Breast Health Global Initiative, a Seattle nonprofit that works to improve cancer care in developing countries, called the new ward an important first step to demonstrate that cancer care is possible even in rural or underdeveloped countries. “It’s incremental, but if you don’t start you certainly won’t get there,” he said.

Eventually, Rwanda plans to expand advanced cancer care to hospitals around the country of 11.7 million people, using a new set of treatment guidelines. To many, Rwanda may seem an improbable place to find a government so committed to improving the health of its citizens. Ten years ago, the country was still struggling to move on from the infamous 1994 genocide that decimated its populace, but now many see its health care system as a model for other developing nations.

“From what I’ve seen so far, I’ve been amazed at how proactive the government is,” said Dr. Neo Tapela, who works jointly with Partners In Health and the Rwandan Ministry of Health. “I think it’s particularly because of the history of Rwanda that makes it so passionate about moving forward.”

Patients, including Husna, began moving into the new cancer ward Monday from elsewhere in the hospital. It will feature 24 beds amid well-ventilated spaces, staffed by a specially trained oncology team, an internist, and Moore, the pediatrician. A new pathology laboratory, set to open soon with help from Brigham and Women’s Hospital in Boston, will allow doctors to test patients’ biopsies quickly for suspected cancer. The Jeff Gordon Children’s Foundation has donated $1.5 million, and other costs are being shared among Dana-Farber, Partners In Health, and the Rwandan government.

Medical workers in Rwanda receive little training in treating cancer and other chronic diseases, so Dana-Farber has sent nurses from Boston to teach oncology care to the eight nurses chosen for the cancer ward. Dana-Farber is also donating cancer drugs.

Nurse Anne Elperin recently returned to the United States from a three-month rotation at Butaro, where she taught nurses how to mix and deliver chemotherapy. “It was really powerful to be there and be part of the first cancer center in rural Africa,” she said. “It’s a really brave endeavor.”

Hungry for knowledge, nurses would come in on their days off or stay late after long shifts to attend her classes. For the first time, said Elperin, “you’re going to have this core group of nurses that are really engaged in oncology and identify as oncology nurses.”

By the time she left, Elperin had trained one nurse to continue teaching other nurses at the hospital. The goal is to build a medical system that can sustain itself using local people and expertise.

Also striving to build local knowledge is Tapela, who helped craft the national cancer treatment guidelines, which were endorsed by the government in June.

The guidelines include standard treatment protocols for the most common and curable cancers and instructions for screening — important for the many clinicians who have seen only end-stage cancer, when little can be done.

Until recently, most Rwandans did not know what cancer was or put off seeking help for a disease they believed to be incurable. Organizers of the cancer ward are also training community health workers to spot people with early signs of disease and to refer them for care.

“The best advertisements we have there are the patients who have gotten better,” said Dr. Lawrence Shulman, chief medical officer of Dana-Farber. “I think that’s what changes the cultural attitudes faster than anything else we could do.” Shulman said he has seen growing cancer awareness in Rwanda since Dana-Farber treated its first cancer patient there six years ago.

“Early on, I believe we’re going to be inundated,” said Farmer of the cancer ward. “We can’t find any other example of it being done in rural Africa. We want lots of other people to be doing this.”

Correspondent Robyn Spector contributed to this report from Rwanda. Shen can be reached at helen.shen@globe.com.

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