Many countries struggle to provide chemotherapy drugs to their children; St. Jude wants to change that
Working with WHO, St. Jude will invest $200 million over 6 years to increase access to quality cancer medicines for children across the globe.
January 11, 2022 • 4 min
Charity Kawadza is often the one to tell parents there are no chemotherapy drugs available for their children at Parirenyatwa General Hospital in Harare, Zimbabwe.
None in the whole country.
Kawadza is a nurse and the health promotions coordinator with KidzCan Zimbabwe, a non-governmental organization that supports the hospital's ward for children suffering from cancer.
“You know children are fighters,” she said. “They can actually survive cancer. … And now you are left with explaining to the parent — some parents will take it and understand, but other parents will blame you. You should have done everything possible to secure that medication so that child can have something.”
She watches them deteriorate and die, knowing they might well have survived if they’d have had the medicines.
“It can be very sad to know your hands are tied sometimes,” she said. “There’s really nothing you can do.”
Zimbabwe’s plight is illustrative of how dozens of low- and middle-income countries worldwide struggle to consistently source and buy chemotherapy drugs for their children.
St. Jude Children’s Research Hospital has announced that it will invest an estimated $200 million over six years to dramatically increase access to quality cancer medicines for children around the world and, in conjunction with the World Health Organization, create the Global Platform for Access to Childhood Cancer Medicines.
The announcement followed an intense period of research that spanned several years and builds on the dedicated work of many over decades.
In October 2021, the St. Jude Board of Governors approved the business plan for the new platform and committed an investment to fully fund its development and implementation. The success of the platform will require more discussions with stakeholders in its development, implementation, scale-up and sustainability.
But here’s how it will work:
The St. Jude/WHO global medicines access platform will launch as a two-year pilot project providing medication at no cost to 12 countries. By the end of 2027, it is expected that 50 countries will receive childhood cancer medicines through the platform.
It’s estimated 120,000 children could be impacted within the first six years.
The program will provide end-to-end support. It will consolidate global demand to shape the market; assist countries with the selection of medicines; develop treatment standards; and build information systems to ensure that effective care is being provided.
No countries have yet been chosen for the project. They will be announced at a later date.
Nonetheless, the news of even the possibility of medicine access brought hope to Daniel Mckenzie, executive director of KidzCan, the only non-profit group in Zimbabwe dedicated to supporting pediatric cancer patients, because he knows access to therapy drugs would mean a real change in outcomes for children.
“I’m very appreciative that, despite what we’re doing, someone has heard our cries,” he said.
In Zimbabwe, government policy is that all children under the age of 5 should receive free medical care in any government hospital. But because of limited resources, parents are often forced to pay for drugs on their own or seek out private non-profit groups for financial help.
To relieve that burden, KidzCan has taken on the role of locating and supplying chemotherapy and other medicines. Forty percent of the organization’s budget goes to cover medicine costs at $60,000 per year. To fully treat all current patients, though, they’d need a budget of $160,000. That doesn’t count the many patients who never seek treatment or those who travel to neighboring countries like South Africa who would stay in Zimbabwe if chemotherapy was available.
The organization also partially funds the pediatric cancer ward at the hospital where Kawadza works.
Grants allocate only a small percentage of funds toward medicines. Many international donors would rather give grants for awareness and prevention than clinical care because they say that’s the role of the government, Mckenzie said.
With an economy that has teetered on the brink of collapse, and COVID-19 closing borders, getting medicines into the country has been, at times, impossible — even with money in hand.
Those delays in shipping and acquiring chemotherapy have caused gaps in treatment. That means doctors have been forced to change protocols for patients based on what medicine is in stock, not what children actually need. And children who have traveled hundreds of miles for treatment arrive only to find there’s no chemotherapy available for them at all.
So many children with cancer die in Zimbabwe that KidzCan has partnered with a funeral home.
“We try to be holistic in the support because we’re losing a huge number of kids,” Mckenzie said. “We can’t just abandon them when the child dies because the same mother is going to come to me: ‘Daniel, I live 1,000 kilometers away. I don’t have a penny to go back home with my child.’”
The organization’s official policy is to give $50 U.S. dollars for bereavement.
“But that’s not enough,” he said. “So, we’ve asked a funeral home to say, 'Well, look, on average we lose 50 kids a year, which is $2,500. Can we give you that $2,500 and then you create a policy for our 800 children so that should any of them die you take them home?’
“And that’s where we are.”
Mckenzie said he often feels overwhelmed.
“It’s sad for me to say this, and I’ve said it to the board: If no drastic changes happen, all we are doing as an organization is helping the kids survive a year or two,” he said. “It’s painful to say that, but that’s what we’ve been doing. …
“All the fundraising that we do, we still just bury it with the kids.”
There is a world out there, Mckenzie said, of people who do listen and care about the plight of children in even the smallest communities in the world.
“I always say that, look: Children are children irrespective of where they’re born,” he said. “Cancer is cancer irrespective of where you are. Chemotherapy drugs are the same wherever you are. Why, then, should our children in Africa and Zimbabwe die?”
The impact of the new global medicines access platform will be profound for children.
“They will survive,” he said.
To learn more about KidzCan, visit KidzCanzimbabwe.org.