‘No child should die’: the US hospital leading a global fight against childhood cancer
TThe death of a child from cancer is a devastating but increasingly rare event in wealthy countries – where death rates are at historic lows and more than eight in 10 patients now survive childhood cancer. In low-income countries, by contrast, children routinely die from curable diseases: only three in 10 people who develop cancer will survive.
The odds are probably even higher, because an estimated 50% of all children with cancer never receive a diagnosis.
The West has invested enormous resources in combating infectious diseases in poor countries, reducing the death toll from AIDS, malaria and tuberculosis. But cancer is seen as something in the ‘too hard’ pile. The obstacles were enormous: too few specialized doctors and nurses, hospitals that did not have X-ray equipment, let alone MRI scanners or radiology equipment. And the high cost of chemotherapy drugs.
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A common condition
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The human toll of non-communicable diseases (NCDs) is enormous and rising. These diseases end the lives of about 41 million of the 56 million people who die each year – and three-quarters of them are in the developing world.
NCDs are simply that; Unlike a virus, for example, you cannot contract them. Instead, they are caused by a combination of genetic, physiological, environmental and behavioral factors. The main types are cancer, chronic respiratory diseases, diabetes and cardiovascular disease – heart attacks and strokes. About 80% are preventable, and all are increasing and spreading inexorably around the world as aging populations and lifestyles, pressured by economic growth and urbanization, make unhealthy living a global phenomenon.
NCDs, once seen as diseases of the rich, now have a hold on the poor. Disease, disability, and death are perfectly designed to create and increase inequality—and if you’re poor, you’re less likely to receive an accurate diagnosis or treatment.
Investment in tackling these common and chronic conditions, which kill 71% of us, is incredibly low, while the costs to families, economies and communities are staggeringly high.
In low-income countries, NCDs – typically slow and debilitating diseases – see a fraction of the money needed being invested or donated. Attention remains focused on the threats of communicable diseases, but cancer death rates have long surpassed the death tolls from malaria, tuberculosis and HIV/AIDS combined.
‘A Common Condition’ is a Guardian series reporting on NCDs in the developing world: their prevalence, solutions, causes and consequences, and telling the stories of people living with these diseases.
Tracy McVeigh, editor
In Memphis, Tennessee, a hospital is leading the renewed fight against childhood cancer around the world thanks to its own resources, its celebrities and the motto that “no child should die in the dawn of life” – and not just no American child.
St Jude Children’s Research Hospital owes its existence to a 1950s American entertainer who started life as Amos Muzyad Yaqoob Kairouz, the son of Maronite Catholics who came to the US from Lebanon in search of a better life. A devotee of Saint Jude Thaddeus, the patron saint of hopeless causes, the entertainer pledged to a statue of the saint that he would repay any success that came his way. After changing his name to Danny Thomas and becoming a household name on American television, he raised the money to build St Jude Hospital, dedicated to treating children with cancer and other catastrophic diseases. It opened in 1962.
Dr. James Downing, the hospital’s CEO, says its mission was ambitious from the start: “to promote the cure and prevention of catastrophic diseases in children through research and treatment… It has always considered itself unique in the broad ecosystem of healthcare for pediatric patients. patients. And so the question is always asked: If not St. Jude, then who? And so, what does the world need? What are the problems that exist? Do we have the expertise to tackle these problems? Is it on a mission for us? And can we raise the money to actually tackle those problems?”
In partnership with the World Health Organization, St Jude is leading the work to transform the treatment of children in low- and middle-income countries. St Jude trains doctors, supports hospitals and is now investing $200 million to provide cancer drugs to 120,000 children by 2027. Deliveries to the first six countries should begin in the fall or early 2024.
It’s a big challenge. Many countries in Africa and Asia have shortages of even the most basic medicines. Pharmaceutical supply chains are cumbersome and fragmented. Medicines are diverted and sold on the hidden market. Some are substandard or counterfeit and will do more harm than good. In January, the Bureau of Investigative Journalism revealed that at least a dozen brands of the childhood cancer drug asparaginase were below normal, which contains too little of the active ingredient and sometimes dangerous contaminants. Over the past five years, supplies of these drugs have been shipped to nearly 100 countries around the world.
Downing recognizes the pitfalls, but remains optimistic. Money indeed doesn’t seem to be a problem. In 2021, St Jude raised $2 billion in donations. Celebrities like Jennifer Aniston, Jim Carrey, Sharon Stone and John Travolta have given or raised money. Domino’s Pizza has pledged $100 million. The largest source of income is direct mail pledge program called Partners in Hopethat brings in money from families and individuals in the US.
St. Jude first focused on acute lymphocytic leukemia in the 1960s. St. Jude’s research teams have helped increase the cure rate from 50% to over 90%. They then began exploring international ties, twinning with a hospital in El Salvador.
“We taught the doctors, the administrators and the nurses what it takes to treat a child with cancer,” says Downing. “We focused on acute lymphocytic leukemia in that one hospital and we were able to increase the cure rate from 20% to 60% for less than a million dollars over several years.” Over more than two decades, the St Jude initiative expanded to 24 programs in 17 countries, primarily in Central and South America.
When Downing became chief scientific officer, before taking over as CEO, he asked Tachi Yamada, head of Gates’ global health program, to review the work. Yamada said two things that stuck: the program wasn’t scalable – and drugs would be a problem.
To scale it up, he and his colleagues built a global program based on learning. They founded a St Jude Global Academy to train people to train doctors and other hospital staff. They worked with WHO to help governments understand their childhood cancer care capacity and how to improve it. The St. Jude Global Alliance, consisting of 200 institutions in 80 countries, was founded. St Jude teaches them how to conduct clinical research, an essential part of cancer care.
Three years ago, Downing returned to Yamada’s point: what are we going to do about drugs? “We know there are shortages, we know patients are receiving poor quality medications, and we know that even among those who have access to medications, more than half are interrupting their therapy due to inconsistent access. We know it is a financial burden. So what are we going to do and let’s just take a clean sheet of paper and think globally.”
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Six countries will soon test the solutions created by St. Jude, WHO and Unicef. They are looking at blockchain technology to track supplies to patients. It would be naive to think that distraction wouldn’t be a problem, says Downing. They work together with governments and do not send medicines to clinics themselves, as happened with HIV. It opens up the possibility for real drug supply reform.
UNICEF has long experience in purchasing and supplying medicines to low-income countries. Dorcas Noertoft, head of purchasing services, is enthusiastic about the program. “I especially like the way it’s done: working with the government and making sure they’re behind you all the way,” she says. With the expertise of WHO, Unicef and St Jude, we will learn a lot in the coming years. “Things will change,” she says.
André Ilbawi, technical leader of the WHO’s cancer control programme, is enthusiastic. “This is an opportunity for us across generations,” he says, to address the “ongoing challenge” of access to care and medicines, not just in pediatric cancer, but in the future in adult cancer and other non- communicable diseases.
The program provides “end-to-end support,” he says. It is not only about delivering the medicines, but also about the safe handling and storage of chemotherapy medicines. Other work “will look at the context in which these drugs are developed, purchased, quantified, delivered, handled, prescribed, dispensed and also disposed of, as there are situations where chemotherapy drugs can be left on wards or dumped into pits by hospitals, which also have concerns or threats to the community,” he says.
But the supply of medicines is only one problem. Half of the world’s children with cancer are never diagnosed. Now experts are working on how to make it easier for healthcare providers to identify the disease.
“I truly believe that we will learn more from working with low- and middle-income countries than they will learn from us,” says Downing. “We will learn about natural experiments (unexpected events that occur naturally). Maybe we overtreat some children. We will learn a tremendous amount about healthcare delivery.”
Downing did many impressive things in his life; Leading the pediatric cancer genome project was one of them. But he says: “This might be the most important thing I ever do. It has the potential to impact children everywhere, save millions of lives and ripple back into the developed world.”