Transforming pediatric cancer care from the ground up

Three-year-old Maria* and her parents are armed with everything they own – clothes, keepsakes, pots and pans, and wood gathered for cooking. For the past two days, they have traveled seven hours a day on a crowded bus and are now waiting at a bus stop, holding onto their belongings as tightly as they hold onto hope.

It hasn’t been easy leaving their village, but they’ve heard that Kamuzu Central Hospital (KCH) in Lilongwe, Malawi (a country in southeastern Africa) might have a treatment for the leukemia that has poisoned Maria’s body. They are willing to do whatever it takes to bring their daughter home healthy. But first, they have to find a way to get from the bus stop to the hospital with Maria, who is too sick to walk.

Suddenly, a car pulls up and a few doctors jump out. They carry Maria to the car and help her family pile in, their belongings loaded onto their laps.

This isn’t your typical hospital intake, but it’s how things go at KCH’s pediatric oncology ward – a place where treating kids with cancer means caring for their families, earning their trust, and sometimes, picking them up at the bus stop.
 

On the ground

KCH’s oncology ward runs in large part thanks to the Baylor International Pediatric Aids Initiative (BIPAI), an integral player in the global fight against pediatric HIV/AIDS, founded in the late 1990s. Since then, BIPAI has built on the foundation of their HIV/AIDS work to expand care to include treating malnutrition, tuberculosis, and maternal and pediatric health concerns in underserved areas all around the world – including oncology and hematology at KCH’s pediatric ward in Lilongwe.

Patients often travel far distances to receive care at KCH, and those going through cancer treatment might be admitted for several months. Unlike hospitals in resource-rich countries like the United States, there are no extra beds or family care facilities to house parents and siblings. Often, there aren’t even enough beds for every patient.

“The reality of a hospital in a place like Malawi is just ... it’s tough,” says Dr. Stephen Martin, a pediatric oncologist from the United States who began working with BIPAI in Malawi six months ago. “There are two or three patients to a bed. You have patients and families sleeping on the floor…but there are little things that we can do to make huge improvements in both the quality of the facilities and the quality of care that we have to offer them.”

Many of these improvements are made possible by grants from charitable organizations like the AbbVie Foundation, a long-term partner of BIPAI’s. Over the years, the Foundation has helped sustain BIPAI’s global work, funded significant renovations to BIPAI's infrastructure, including a new pediatric oncology ward, helped purchase necessary equipment and supported two Centers of Excellence, including one in Malawi.

“It’s really important to us that we commit and stay in areas where we have begun to make a difference. And our partnership with BIPAI in Malawi is a really good example of that,” says Melissa Walsh, vice president, AbbVie Foundation. “We trust the BIPAI team to tell us where the greatest needs are and where our support can have the most impact based on the information they’re getting from actually being on the ground.”

It was on-the-ground information – quite literally – that led to one recent improvement.

“In between our out-patient clinic and our in-patient ward, there’s probably 20 feet ... the floor there was just dirt. That’s fine in the dry season, but in the rainy season, it becomes an absolute muddy mess for families coming between clinic and the hospital,” Martin says.

With no way to stop the mud being tracked into the pediatric oncology ward, it had become a sanitation challenge, especially for children immuno-compromised from chemotherapy.

With help from the AbbVie Foundation, BIPAI built a new floor. “Now, we have a floor we can actually mop and sanitize,” Martin says.

Walsh personally saw the impact of another of these seemingly minor improvements when a shipment of mattresses arrived during a visit to KCH.

“The children had been sleeping on metal frames. They are there to receive cancer treatment, and they didn’t have comfortable beds to sleep in,” she says. “What seems to us like a small contribution can really improve the experience of those who are going through an incredibly tough time.”
 

A team effort

Pediatric cancer statistics in sub-Saharan Africa are daunting: there’s only a 10-20 percent survival rate, compared to an approximate 80 percent survival rate in the United States. But as BIPAI continues to find ways of improving pediatric care in Malawi, the goal is to improve those odds.

Until they do, Martin will find hope in cases like Maria’s.

“We were able to get her into remission,” he says. “And just the difference in seeing her, where she was when she first came with diagnosis … carrying her out of the bus station, getting her through the cycles of treatment, and seeing her improve is just … it’s such a privilege.”

While he gives most of the credit to the Malawian doctors and nurses who do everything possible to help KCH’s sickest patients, Martin emphasizes that success stories like Maria’s are a team effort.

“We can’t do any of this without a proper facility. We can’t do any of this without treatment and equipment. We can’t do any of this without supportive care,” Martin says. “It makes you realize how much effort from so many different people both on the ground and at the institutional level goes into actually treating just this one patient.