The dates were already set for the opening of the Butaro Cancer Center of Excellence (BCCOE) in northern Rwanda. President and Chelsea Clinton were scheduled to be there. Dr. Agnes Binagwaho, Rwanda’s Minister of Health, and representatives of the Government of Rwanda had it on their agendas. Several of the world’s leading oncology researchers had their flights booked. But NASCAR champion Jeff Gordon had a scheduling conflict.
And so, the Clintons, the Ministry of Health officials and the doctors rearranged their schedules. The event simply couldn’t take place without Gordon.
While most sports fans know him as a four-time NASCAR Cup Series champion, he is also an avid philanthropist. His foundation's $1.5 million grant was instrumental in developing the pediatric cancer center in Rwanda. Not Impossible Now spoke with doctors involved with the initiative to find out the impact it has made.
Cancer Treatment Is Sparse in Sub-Saharan Africa
Cancer treatment has always been sparse in sub-Saharan Africa, especially once the HIV-AIDS epidemic gripped the area, recalls Dr. Neo Tapela. As a child growing up in Botswana, she says, there was only one oncologist in the entire country. Residents in Rwanda, Lesotho, and other nearby countries experienced similarly limited access to care.
Before the BCCOE opened in 2012, the path to treatment was arduous at best, she explained in a phone call with Not Impossible Now last month.
If anyone had a lump in their breast in a village in the southern part of Rwanda, they would face several obstacles to care. First of all, the patient would wait a long time before actually going to a health facility. They might try visiting a local healer first. Once they visit a health facility, they’d be given antibiotics or be misdiagnosed. Then they’d try various primary care facilities and health centers, where one of the clinicians would suspect cancer, and then refer them to the district hospital. They’d be bounced around again, because not many health care providers receive training in cancer.
There are a lot of people who don’t suspect cancer when they should, she added. Once diagnosed, the patient would again be sent to a district hospital, then get a referral to a hospital in an urban setting, often far away.
“By the time a patient would be referred to the referral hospital, I would say a majority of them will have died,” she said. Even once they get that far, chemotherapy is prohibitively expensive. “The disease has progressed or they don’t have the resources to navigate this system.”
The World Health Organization estimates that 70 percent of cancer deaths occur in developing countries, and that more than 2.4 million deaths in these countries could be avoided each year with adequate preventative care and treatment.
At 14, Tapela witnessed this firsthand as she watched her 42-year-old aunt succumb to breast cancer, which took her life within a year of the diagnosis. The loss sparked Tapela’s interest in medicine, and she vowed to return to Botswana one day as a doctor. After attending medical school in the U.S., Tapela returned to Botswana to join the newly opened national medical school for a year before joining Partners In Health in Rwanda in 2011. One year later, Gordon’s grant helped make her goal of treating cancer patients in Botswana a reality.
Building the Region’s First Rural Cancer Treatment Center
Gordon came on board in 2011 through his connection with President Clinton, who was already working on healthcare initiatives in Rwanda. The Jeff Gordon Children’s Foundation had worked with the Clinton Global Initiative on several domestic projects in the past, but never an international venture.
Part of the CGI’s work in Rwanda was with Dr. Paul Farmer, co-founder of PIH, and Dr. Larry Shulman, chief medical officer at the Dana-Farber/Brigham and Women's Cancer Center in Boston, on a program that trained oncology nurses in Rwanda by remotely pairing them with pediatric oncologists in Boston.
PIH started partnering with Rwanda’s Ministry of Health in 2005, and Rwandan President Paul Kagame inaugurated the Butaro District Hospital in 2011. The hospital is a government hospital, and receives support from PIH. The Dana-Farber Cancer Institute and the Brigham and Women’s Hospital started working with PIH on the effort, and by the fall of 2011, they were looking to expand the program into a full cancer treatment center, complete with a pathology lab. When President Clinton introduced the group, Gordon expressed interest in their plans.
After spending a fair amount of time discussing the concept with Gordon and the director of his foundation, Trish Kriger, Shulman and Kriger visited Rwanda. Together, they saw the state of cancer care at hospitals in the country. There were dozens of children in single rooms, with little free space between beds. Without a pathology lab, diagnosis took months. Many of the cases were never diagnosed at all. If a patient needed radiology, they were sent to Uganda. The journey was often too expensive for families to even consider.
“If you had cancer in Rwanda, you died,” Shulman explained. “You got no care. That was that.”
Upon returning from the visit with Kriger, Shulman visited the Jeff Gordon Children’s Foundation’s board in North Carolina. They voted to support the initiative with a three-year, $1.5 million grant. Gordon joined the Clintons, Dr. Shulman, Dr. Farmer and Rwandan Minister of Health Dr. Agnes Binagwaho at the opening ceremony.
Gordon wrote about the event on his foundation’s website.
“I was alarmed by the thought of children suffering and ultimately dying of cancer because they didn’t have access to available treatments,” he wrote. “I’ve won a lot of races in my career as a NASCAR driver, but few victories can trump the pride I felt yesterday at the opening of the Butaro Cancer Center of Excellence in Rwanda.”
Additional funding has come from the LIVESTRONG Foundation, breast cancer research foundations and private donors.
“Our mantra is really that poverty should not be a barrier to access to good medical care,” Shulman added. “Most of these people can’t afford anything. That’s why the funding and Jeff’s funding is so important.”
What the BCCOE Offers
As construction began on the BCCOE, Shulman recalled, people in the community thought the campus was a resort for tourists.
“They had never seen an institute that looked like this for them,” he said. By November 2014, they’d treated more than 2,800 patients.
The main hospital inpatient area features 22 beds and three isolation rooms. There is also a pathology lab, made possible by Gordon’s grant. An ambulatory center was added in August 2013. Located a few hundred years from the main hospital, the ambulatory center offers additional clinic space for more patients to be seen on any given day, and in the near future will be capacitated to provide IV treatment to up to 12 patients per day without the need for patients to spend the night in the hospital.
All chemotherapy and pathology testing at BCCOE is free. It’s helped many patients survive highly treatable forms of cancer, such as Wilms’ tumor. Wilms’ is about 80 percent curable, Tapela explained, but was one of the deadliest in Rwanda because it requires 27 rounds of chemotherapy.
“You can imagine that for families that are really invested in having their child get better will cobble up funds from relatives for the first 5-10 trips [for treatment],” she explained. “But at some point the resources for the family run out. It’s not just about starting treatment, but completing treatment, which is the point.”
Patients are also fed during their stay, a service not yet offered widely in public hospitals.
PIH, with Dana-Farber and other partners, support procurement of medicines and also guide management of patients through remote consultation between Butaro-based doctors and specialists located in Boston. Brigham and Women’s Hospital pathologists collaborate directly with pathologists in the lab at Butaro, and doctors and nurses from both Boston medical centers consult with Butaro’s doctors and nurses via weekly conference calls.
“Butaro really has expanded access to cancer care beyond what anybody imagined,” Tapela said. “We are surprised on a regular basis about the impact.”
Beyond the actual cancer center, the BCCOE has created a way to be referred directly by a district hospital, cutting out at least one level of referrals. And with a more standardized approach to treating cancer, the center can teach practitioners from across the country. By applying protocols developed jointly with MOH and other partners, BCCOE has helped to standardize cancer care. They can learn from the Dana-Farber nurses who are stationed in Butaro, and those who log in for a conference call every Thursday morning. In August 2014, the Government of Rwanda announced that the next phase is to build a medical school on the Butaro campus.
Gordon has visited several times, meeting patients and learning local traditions. One time, he and his family handed out more than 100 quilts stitched specifically for the children there. He wrote about the trip on his blog, saying, “Our trip to Rwanda was truly a life-changing experience. It has completely changed my perspective on virtually every aspect of life.”
In Tapela’s eyes, the center is redefining the way medical care is handled in her home region. She is seeing relationships develop between doctors and patients, as patients are able to return for routine care instead of relying on emergency rooms and regional clinics.
“To me that is important to take care of patients and provide treatment, but it’s also important to refine or change the culture of the way medicine is being delivered,” she said.
Technology Will Offer Even Greater Change
Patients are all treated at the center — according to Shulman, it is currently at double capacity — but pathology is still handled remotely. All pathology slides are sent to Dana-Farber and Brigham and Women’s. They are also uploaded into a telepathology system and electronically reviewed.
The plan is to compare the diagnoses offered from both types of readings. If they consistently match, the institute will start relying on telepathology more often, saving on shipping costs and time. It can take two or three weeks for slides to travel from Butaro to Boston.
Tapela says they are hoping to be using telepathology regularly by 2015, though slides will still be sent to Dana-Farber for complex cases. One of the hold-ups with moving to telepathology earlier is that the hospital is still in the process of securing high-speed internet. They currently use satellite-based internet, which does not have as much capacity as fiber-optic lines.
Among the reasons the government has committed to laying the fiber-optic cables by 2015 is the center's importance to the region.
A New Outlook in Rwanda
The technology and quality of care available at the BCCOE has completely changed the outlook of this generation in Rwanda and neighboring regions. There is a spirit at the hospital that Shulman says he never saw at regional facilities, where patients had little hope of receiving adequate treatment due to the overwhelming lack of resources.
Today in Rwanda, says Shulman, “many are surviving and previously they didn’t have a chance to survive.” He credits Gordon with making such success a possibility.
“I’m not sure we would have a cancer program that looks anything like it looks now without that grant. I’m not sure we would’ve had the type of cancer program that we currently have without it,” he said.
The initial grant will expire in December 2014, and the center is still waiting to hear if Gordon’s foundation will extend it. Regardless of what happens, the master of the NASCAR track has already created hope and opportunity for thousands in Rwanda.
“It's been a difficult road in Rwanda, but I know that we will do great things there and that many of the children that I have now met will go on to live long, healthy lives because we chose to act,” Gordon said in a 2011 Huffington Post story.
“The kids are smart,” Shulman reflected last month. “They know they’ve been given a chance for life that they never would have had before.”
Learn more about the Jeff Gordon Children’s Foundation at their official site.
Top photo caption: Dr. Larry Shulman and Jeff Gordon on rounds in the hospital. (Photo courtesy of Dr. Larry Shulman)