Before COVID-19, it was hard enough to get pediatric cancer drugs in Uganda.
“You might have a child with leukemia, and only three or four of the six or seven drugs that are needed to treat the leukemia optimally would be available,” said Dr. David Poplack, the director of Global HOPE, a Texas Children’s Hospital program working to improve pediatric cancer outcomes in Sub-Saharan Africa.
Supplies in many countries in the region are unreliable, and doctors frequently must rely on drugs of inferior quality. “One might treat a child with newly diagnosed leukemia, and notice that their hair doesn’t fall out,” usually a sign that the drugs are of suspect potency, Dr. Poplack said.
But the pandemic has made the process more difficult than ever. Uganda is on lockdown, which means all but essential businesses are closed, and most transportation – including passenger flights – are shut down. Fewer customs officials are working, and only a few hours a day when they are, according to Michelle Mugyenyi, a program manager for Global HOPE working on the ground in Uganda.
As a result, there is a shortage at Mulago National Referral Hospital, the largest pediatric oncology/hematology center in Uganda and one of the largest in Sub-Saharan Africa, Mugyenyi said.
The potential consequences of the delays and decreased capacity are grave, according to Joseph Lubega, a pediatric oncologist who is the associate director of the Global HOPE/Makerere University Pediatric Hematology/Oncology Fellowship training program and an assistant professor at Baylor College of Medicine.
“When you’re treating a child with cancer … [the supply] has to be reliable, because everything has to be administered according to a very stringent timeline,” he said. “If it shows up a week later, it may mean the difference between life and death for a child.”
But despite the difficulties, a shipment of cancer medicine and supplies from Direct Relief’s warehouse – a result of the partnership between the organization and Texas Children’s Global HOPE – cleared customs on April 17.
The shipment included the drug cyclophosphamide, donated by the global medical products company Baxter, used to treat lymphoma, leukemia and kidney cancer, among others.
“It’s a really critical drug in all the common childhood cancers,” Dr. Lubega said. When it comes to the importance of the shipment, “I can’t even describe it in words. It’s a godsend.”
That shipment will be the first of many. Through a partnership with Direct Relief, the pharmaceutical company Teva will provide oncology drugs to Global HOPE’s program in Malawi beginning in 2020. Teva’s support will extend to Botswana and Uganda in early 2021.
Ambition and Aspiration
Dr. Lubega remembers a time – before Global HOPE began its work in 2016 – when there were no pediatric oncologists in Uganda.
When he was in medical school, “cancer wards were really death traps,” he recalled. “The expectation was that the child is diagnosed with cancer … we go through the motions, and soon they’re going to die.”
Dr. Lubega decided he was going to become a pediatric oncologist – but at the time, there were no training centers in Sub-Saharan Africa. So he went first to England for training, and then to the United States, where he received a fellowship from Texas Children’s Hospital.
Texas Children’s Hospital, under the umbrella of the Baylor International Pediatric AIDS Initiative, was already working with children with HIV/AIDS in Sub-Saharan Africa. In 2016, they sent Dr. Lubega to Uganda to establish a training program for pediatric cancer and blood specialists.
Texas Children’s Global HOPE program, which works to improve outcomes for children with cancer in Sub-Saharan Africa, works by establishing and developing training programs for hematologist-oncologists, and other specialists whose work is essential to successful cancer treatment; increasing the capacity and success of treatment programs; and improving access to life-saving cancer drugs.
“The stimulus behind our developing Global HOPE was the realization of the underlying, horrendous inequity between the outcome of children in Sub-Saharan Africa and children in the United States and Europe,” Poplack explained.
Establishing a training program was an ideal fit for the organization’s work. However, Dr. Lubega admitted, at the time he was more driven by “ambition and aspiration than having a concrete understanding of how this was going to go.”
At the time, there were no fully trained pediatric hematologist-oncologists and only a handful of nurses supporting children with cancer.
Drug supplies were unreliable and as a result, treatment protocols were haphazard at best.
Only 30% of children survived a month after beginning treatment.
The problem wasn’t a lack of health care providers, Dr. Poplack explained. “The pediatricians we work with are extremely well-trained, extremely capable,” he said. “What they lacked was specific subspecialty training in pediatric hematology-oncology, the modern clinical equipment and approaches to make an accurate diagnosis and then, the drugs and therapies that are needed once the diagnosis is made.”
Dr. Lubega set about training nursing staff, pharmacists, and the necessary specialists. He introduced evidence-based protocols.
But, “most important was really a culture change, that…these children can really be cured, they can be saved.”
Things changed quickly. “By the end of the first year, the [one-month] survival rate of kids we treated was up to 85%,” Dr. Lubega said. Over half survived for 18 months or longer.
Changing a Culture
There’s still a long way to go, according to Dr. Lubega. “The reality is we are still just scratching the surface. Only 10 to 15% of kids in Africa with cancer ever see a cancer doctor, ever realize they have cancer.”
Cancer care is a multidisciplinary process, and some resources – pediatric surgeons, ICU units, pharmacists – are still extremely hard to come by.
Complicating matters is the fact that there seem to be some slight differences – possibly genetic, possibly environmental – between pediatric cancers in Africa and in the United States, but it’s impossible to study further until basic, reliable treatment protocols are established.
And then there’s the issue of oncology drugs, which are difficult for most families – or even governments – to afford.
Improved access to drugs won’t just improve outcomes for individual patients, Dr. Lubega said. It has the potential to change the culture around cancer care in Sub-Saharan Africa.
As the latest drugs become available, survival of children is improving, and a cure is becoming a reality for an increasing number of children, both Dr. Poplack and Dr. Lubega said.
Historically, the public understanding of childhood cancer has been limited. “In many of the villages and towns, there’s little awareness of what cancer is and that children do suffer from cancer,” Dr. Lubega explained. “People who have cancer are sometimes shunned, and there’s a significant stigma. It’s oftentimes considered infectious.”
Global HOPE also conducts community awareness and patient outreach programs designed to increase awareness of childhood cancers – and encourage people to take advantage of treatment.
The organization wants to change the culture around childhood cancer in Sub-Saharan Africa. “This is our number one priority if we as Global HOPE can show we can cure kids with cancer in the African setting,” Dr. Lubega said.
And drugs are an essential part of that, he explained: “If we have a stable supply of the chemotherapy agents, we can radically improve the survival statistics for tens of thousands of children.”
COVID-19 has introduced some temporary challenges. Drugs are harder to come by. Because public transportation has shut down, it’s harder for patients to receive treatment.
“Our team is having to drive to the patients’ homes and administer chemotherapy there if it’s possible,” Dr. Lubega said.
And Dr. Lubega himself, for the time being, can’t return home. “I miss being part of it, because the difference between there and my work in the U.S. is the impact you make,” he said, speaking from Texas.
“I’m one of many, many pediatric oncologists here. There, you are making a real, paradigm-shifting impact in terms of what’s possible for those children.”
Working with Direct Relief and Teva will mean a long-term supply of precisely the drugs that will improve outcomes for children – and, with luck, encourage families to seek care and health officials to treat pediatric cancer as more of a priority.
Dr. Poplack is optimistic. “If we can improve the survival rate by 40% – and we’ll ultimately go far beyond that – 40,000 children can be saved each year,” he said. “I know of no other medical activity where one can have that kind of impact.”