Liberia Struggles to Treat Children With Cancer
MONROVIA, Liberia -- Peter Yarkpawolo was like other happy 8-year-olds in his neighborhood, playing soccer every minute he wasn't in school with his friends in the dusty streets of Paynesville, a suburb of Liberia's capital, Monrovia.
Then one day last October, Peter came down with a cold. When it worsened, the local clinic treated him for malaria, and then for anemia. As he became sicker the clinic sent him to a pediatric emergency hospital for a blood transfusion. A clinician there suspected it was something more and referred him to John F. Kennedy Memorial Medical Center, the largest hospital in the country and known by locals as "JFK."
But by now Peter's unemployed parents had spent all their own money and borrowed all they could from family. So they waited another month, hoping Peter would get better with traditional medicine. By the time he arrived at JFK in December, Peter was barely conscious. Swollen lymph nodes covered his body. JFK's doctors gave Peter's parents the diagnosis: cancer of the blood, or acute lymphoblastic leukemia.
"That was my first time even hearing of cancer," says Peterson Yarkpawolo, Peter's father. "It was scary. For someone to tell you, 'Your only child has cancer,' it's like, wow."
By the time Peter was diagnosed cancer had been attacking his body for more than two months. Every day is critical in fighting leukemia; in advanced medical settings children who receive rapid treatment have a 90% survival rate. But in Liberia, any type of cancer is almost always a death sentence. Doctors here can count on one hand the children who have survived.
At JFK Peter shared a ward with another boy with the disease. A few days later that boy died, dealing Peter an emotional blow. "Peter was very down," his father says. "Every day we shared tears because we thought there was no hope."
Peter's story plays out regularly across sub-Saharan Africa. Poverty and poorly resourced health care systems in all but a few countries mean few cancers are even diagnosed. Only the very rich can access or afford treatment.
In Africa, where few people have access to affordable health care, children with cancer face a terrifying lottery, where survival depends on luck: either you find a doctor and someone able to pay for treatment, or you die.
War's Aftermath, Ebola Devastate Health Care
Liberia is a classic example of the cycle of underperforming health outcomes that plague poor countries. But the country has faced more than its share of setbacks. A devastating civil war that ended in 2003 left the health care system on its knees.
The 14 years of conflict obliterated the economy. Anyone with an education fled, including all the medical specialists. In 2011, Dr. Sia Wata Camanor visited JFK from her home in the Liberian diaspora in South Africa, where she had just qualified as a pediatrician. For a few months that year, there were no pediatricians in all of Liberia.
"That's when I knew I had to come back," says Camanor, now the chief medical officer at JFK. "I saw there were two medical officers running the pediatric ward. And I thought, 'Surely one pediatrician is better than none.'"
It was not until 2013 that the medical school here began training specialists. Then, a year later, disaster struck again. The 2014 West African Ebola outbreak was the worst the world has seen. Official reports show 28,616 people were infected and 11,310 died in Liberia, Guinea and Sierra Leone. The World Health Organization estimates the real numbers were much higher.
Medical staff, on the frontlines and completely unprepared, were hit hard. By the time the outbreak ended in May 2015, what little progress had been made in improving health care conditions across the country had been wiped out. More than 8% percent of the health care workers were dead.
Insufficient Training, Poverty Roadblocks to Treatment
In the aftermath, government and international agencies have worked to rebuild the country's health care system, but there's a long way to go. There are now nine Liberian pediatricians in a country of about 4.8 million people. None have training in hematology, the specialty focused on blood diseases, or oncology to treat cancer. Instead, World Bank funding brings in international specialists in those fields.
Liberia is one of the poorest countries in the world: The most recent World Bank estimates show half of the population lives in poverty, and the average annual income is $600. Cancer is low on the list of the country's killers; malaria, malnutrition and diarrhea still ravage children here. With a total annual budget of just $570 million (about the same as the U.S. city of Colorado Springs) and about $50 million allocated for health care, the government cannot do much. Corruption, meanwhile, is staggering. Hospital staff and government officials are routinely caught stealing funds or equipment meant for patients. Hospitals often have no electricity or water.
With so many other priorities, health care workers are not trained to recognize cancer. Even if they were, poor parents will delay the expense of a doctor's visit as long as possible. The most common childhood cancers here are lymphomas that result in large tumors on children's faces, throats or abdomens. Tests aren't needed; the size and speed of growth are sure signs. These lymphomas have more than a 90% survival rate when treated early. But in Liberia, none are.
"When cancer first appears you want to do the maximum," says Dr. Richard Sacra, an American who has been working in Liberia since 2000 and who heads the ELWA Mission Hospital in Monrovia. "The natural response for a Liberian is, 'It's not very bad now, so we're not going to do much.' They only do something when it's metastatic and widespread. Well, when it's metastatic and widespread you can't do anything, anyway."
Further complicating assessments of what care to provide is that no study of the incidence of childhood cancer has been conducted in Liberia. But every expert agrees: Most cancer victims here die without ever being diagnosed.
A Search for Drugs, a Delay in Treatment
By January, Peter Yarkpawolo was in better shape than most Liberian kids with cancer. He had a diagnosis and it was not too late to treat him. Doctors explained the next steps. Peter would undergo a 28-day "induction" with a cocktail of chemotherapy drugs designed to induce remission. His parents would have to buy the drugs, which would cost $1,500.
Doctors may as well have told them to fly to the moon. Peterson Yarkpawolo and his wife, like most Liberians, make money farming, trading and relying on relatives. Even $3 a night for the hospital stay would be a struggle. They had already borrowed $1,000 for Peter's treatment -- more than the family made in a year. Now they needed more, and those initial costs were just the start. Complete leukemia treatment takes more than three years.
Staff at JFK connected the Yarkpawolos to Ne-Suah Livingstone, a local U.N. staff worker who has taken it upon herself to support children in need here. In 2017, as more Liberians had access to social media, desperate relatives began posting pictures of children with disfiguring tumors on Facebook in a bid for help. In the U.S. state of Kentucky, a dentist named Winnie High saw those pictures. High had adopted a 2-year-old boy from Liberia in 2016, and she says the images broke her heart.
"I could no longer ignore such a travesty," High says by telephone. "The Liberian people deserve adequate resources and it's our job to provide assistance whatever way necessary."
High and Livingstone formed a partnership; High raised the money while Livingstone supported the families. High formed Community Partnerships International, a tax-deductible organization, and so far it has raised $40,000. It has worked with Sacra, the U.S. doctor, and also sent children to Ghana and to India for treatment.
High found the money for Peter's drugs, then Peterson Yarkpawolo had to find the drugs themselves. Sometimes the drugs were available at JFK. Other times he had to go to a local pharmacy that imported them from countries such as India and Lebanon. They had no way of assessing the quality.
Finally, four months after he first became sick, Peter began chemotherapy. His health improved and his lymph nodes shrank. But as he neared the end of the 28-day induction period, the boy stopped coming for treatment. Dr. Trokon Richards, a second-year resident pediatrician, called the boy's father, repeatedly begging him to bring Peter back in. When he finally did two weeks later, it was too late.
"All the lymph nodes we had succeeded in treating were back," Dr. Richards said at the JFK pediatrics ward, shaking his head in frustration. "It's very, very bad. The disease has progressed. We have to start from the beginning."
Later that day on the porch of Livingstone's house in Monrovia, Peterson Yarkpawolo was emotional. He had spent all his money buying the high-calorie food Peter needed to keep his white blood cell count high, he explained. He was waiting for the last drug Peter needed to arrive at JFK, where it was cheaper. He had not understood the consequences of delaying Peter's treatment. Now he was desperate.
Peter was slumped on a chair, tired, thirsty and irritated. His throat was swollen as big as an orange.
"He's really bad," Yarkpawolo pleaded with Livingstone. "He needs to go to the hospital."
After overcoming so many obstacles, the family had hit another.
Unthinkable Decisions for Families, Doctors
At the pediatric ward at JFK Hospital, Richards looks at the chart for an emaciated 3-year-old boy named Joshua. Lying on one of four beds in the ward, Joshua has a feeding tube attached to his nose.
The boy's grandmother, Mercy, watches over him. She says Joshua's parents had been told to take him to JFK but instead they took him to a traditional healer. Medical techniques relying on plants and traditional beliefs are still widely practiced across the continent. Cheaper and more accessible, traditional healers are often the first stop for patients. As Joshua neared death, Mercy defied his parents and brought him in.
Dr. Richards, the pediatrician, was waiting for pathologists to confirm the diagnosis for what was almost certainly leukemia. "Then we will be able to tell her which drugs they need to get, if they can. Most of them can't afford the medication. It's very sad."
Joshua was one of five children with cancer besides Peter who had made it to JFK since January. One had died and one had come in too late to treat. Another three, meanwhile, had disappeared, their parents forced to make an unthinkable decision that doctors here understand.
"To see your child suffering, their hair falls out, they look terrible, you have no money, you're not able to get a job, the rest of the family is looking for food," says JFK's Dr. Camanor. "Sometimes if the child comes in late and they wish to go home, I don't stop them. If you're only helping them to survive for six months, why do this to the family?"
By June, Peter Yarkpawolo was admitted into ELWA hospital and was under the care of Sacra, the U.S. doctor, and Dr. Mikey Bryant, a British physician. With the help of Winnie High, the Kentucky dentist, and ELWA officials who had waived many of the fees, they raised the money for the new rounds of induction drugs. Peter was weak and thin. He'd battled an infection and needed a blood transfusion, but he was through the induction and appeared to have stabilized.
"Next step is to do a bone marrow biopsy (if possible) to see if he is in remission," Bryant wrote by email. "Either way he'll need more chemotherapy. There's still a long way to go."
A month later Peter died. An infection took hold in his stomach -- a major risk when chemotherapy weakens the immune system -- and his frail body was unable to fight it.
"He looked fine in the morning when we left him," said his father. "At 3 a.m. they called to tell us he had passed. I can't believe Peter is gone.
Lone Leukemia Survivor Symbolizes the Possibilities
As bleak as the situation looks in Liberia, doctors are seeing slight progress. The country recently received its first two trained pathologists. There are two new machines that medical staff can use to complete the same blood count tests that identified Peter's leukemia. They can do fine needle aspirations and biopsies that allow for more targeted treatment. A histopathology lab opening this year will allow pathologists to study tissue samples and deliver diagnoses fast.
And there are survival stories that buoy everyone's spirits.
Bishop runs to hug his grandmother as she arrives in the yard outside his house in Paynesville, on the outskirts of Monrovia. Bishop's mother, Dekontee Juweh, smiles. The bond within this family has been strengthened by the extraordinary sacrifices that got them here. As far as anyone here knows, Bishop is the only child in Liberia who has survived leukemia.
Bishop had not been sick a day in his life when he came down with a fever at age 3, Dekontee says. It was so unusual, his mother didn't take him to the local clinic. Instead, she took him straight to JFK, a decision that saved his life. Those events took place in 2012, long before anyone could diagnose cancer here. But by good fortune Bishop arrived just as Dr. Venée Tubman, a Liberian-American pediatric hematology oncologist, a specialist in children's blood diseases, was in JFK's pediatric ward. Now based at Texas Children's Hospital, Tubman is the granddaughter of Liberia's longest-serving president and regularly visits JFK to offer her support.
Tubman immediately recognized leukemia and told Dekontee to take Bishop to Ghana, a country that is a 90-minute flight and a $500 airfare, but able to provide health care that is a world away from Liberia. One of the few bright spots in health care on the African continent, Ghana features the Korle Bu hospital, a leading center on the continent for affordable cancer treatment.
"She just told us it would be three months," laughs Dekontee. "But she knew."
Bishop and his mother would be in Ghana for five years. The cost devastated the family. Dekontee's parents and younger brother worked long hours, scraping together savings to support them as Bishop underwent the grueling treatment. Dekontee would wake at 3 a.m. to sweep the hospital in return for a bed for herself in a dormitory reserved for mothers. Bishop's older sister, living with her grandparents, didn't see her mother and brother for five years. Bishop's parents, meanwhile, split; his father refused to pay for treatment for a boy he figured was going to die anyway.
In Ghana, Bishop and Dekontee Juweh saw children die. Dekontee says the parents gave up. She watches her now-healthy 10-year-old son play with his cousins. "I don't blame them," she says. "You gotta' have a lot of patience to go through it. It was hard. I don't blame anyone for giving in."
There is talk here of a national cancer registry in Liberia and a center dedicated to treating the disease, but with so many problems on the government's plate expectations are low. For now, doctors here hope new machines and pathologists will help them increase the odds just a little for a few more kids such as Peter.
Childhood Cancer: Seeking a Better Global Solution
-- The Global Efforts to Boost Childhood Cancer Care
-- Rwanda a Model for Pediatric Cancer in Developing Countries
-- Washington Treats Children of Rural Farmworkers
-- Photo Gallery: Facing Cancer: An Uphill Battle
-- China's Halting Leap Forward With Childhood Cancer Care
-- Hong Kong Children's Hospital Boosts Cancer Treatments
-- Lebanon, Jordan Struggle to Treat Young Refugees With Cancer
-- Opinion: Research in U.S. Can Boost Global Treatment of Childhood Cancer
-- Opinion: International Effort Growing to Treat Pediatric Cancer
This story has been supported by the Solutions Journalism Network, a nonprofit organization dedicated to rigorous and compelling reporting about responses to social problems, http://solutionsjournalism.org.
Prue Clarke is a journalist and media development specialist who has covered Africa since 2004. She founded New Narratives, which supports independent media in Africa. Prue is currently a senior executive with the Judith Neilson Institute for Journalism. You can follow her on Twitter here.
