St. Jude helps send free medicine to childhood cancer patients in multiple countries as part of new global platform

So many children die of cancer in Zambia that a foundation created to support their families has partnered with a funeral home to help bury them.

Outside, on the concrete entryway to Oziron Funeral Services in Lusaka, the owner displays small caskets for sale. Parents can choose between white or a natural wood finish. The Zambian Childhood Cancer Foundation covers the cost of a standard casket, preparation of the body and transportation to the gravesite.  

Most families whose children are treated in Lusaka at the Cancer Diseases Hospital travel by government ambulance from far-away villages with no relatives or support in the capital city.

It’s devastating to bury so many, said Charity Pikiti, the foundation’s board chair. The foundation estimates that only about 10 percent of children with cancer in Zambia survive the disease. At times, they’ve lost three children in a single day. Then, the foundation has to put parents on a bus, back to their villages, alone.

“That’s one thing that has been really affecting us,” she said. “Even in my sleep, I just think of myself alone like that. … It’s something you don’t wish on anyone.”

Healthcare in Zambia isn’t fully funded by the government. Often hospitals lack equipment to properly diagnose patients, but one of the biggest barriers to childhood cancer treatment is lack of access to consistent, quality chemotherapy drugs and other medications.  

“The most difficult and frustrating part is to be able to know what to do and have no tools to be able to do it,” said Dr. Justin Makasa Mulindwa, a pediatric oncologist in Zambia. “And in a sense, therefore, to see children who potentially are salvageable waste away and eventually die as a result.”

Those devastating circumstances could now change because of a new effort to get free, quality cancer medicines to countries in need.

St. Jude Children’s Research Hospital® and the World Health Organization (WHO), in collaboration with UNICEF and the Pan-American Health Organization (PAHO) Strategic Fund, have created a platform to procure and distribute generic cancer drugs to low- and middle-income countries at no cost. They plan to expand the platform to 50 countries over six years, with a $200 million commitment from St. Jude.

The first shipments of generic cancer drugs arrived in January and early February  as part of the Global Platform for Access to Childhood Cancer Medicines, marking  progress toward the goal of providing medicine to treat approximately 120,000 children within five to seven years. The platform aims to deliver more than 50 formulations of 35 essential cancer medicines.

“Danny Thomas, founder of St. Jude Children’s Research Hospital, said that no child should die in the dawn of life. It is a sentiment that motivates me and the employees of St. Jude every day,” said James R. Downing, MD, president and CEO of St. Jude Children’s Research Hospital. “The Global Platform for Access to Childhood Cancer Medicines will be a significant step toward making that dream a reality for children not just at St. Jude but around the world.”

Zambia is among the first countries in the initial pilot phase of the program. The other pilot countries include Nepal in South Asia, Uzbekistan in Central Asia, Mongolia in East Asia, Ecuador in South America and Jordan in the Middle East.  “It will take the availability of these (medicines) to 100 percent,” Dr. Mulindwa said. “And then we’ll know that every child that comes through for treatment will be treated appropriately.”

In Mongolia, doctors face similar challenges with cancer care. Though the government pays for medication, there are often drug shortages because Mongolia doesn’t order them in large quantities, and it isn’t profitable for drug companies, said Tsegi Batmunkh, founder of the National Cancer Council of Mongolia, a non-governmental organization that supports and promotes health and public health research.  And because of where the medicines are imported from, their quality can sometimes come into question, she said.

“Being part of this global cancer treatment access program for children is a big opportunity for our country and for kids suffering with cancer,” she said. “And I think the survival rate will be increased.”

Challenges and solutions

Lack of access to safe and effective medicines is a barrier to cancer care worldwide. Many hospitals struggle to reliably access affordable, high-quality medications for pediatric cancer patients. In fact, 71% of low-income countries report general shortages in cancer medicines.

That inconsistency is often due to supply and demand issues and complicated regulations. Cost can also be a barrier if childhood cancer medicines are excluded from national budgets, creating financial hardship for families. Quality can be threatened, too, when governments prioritize lowest-cost bids.

For the first time on this scale, the Global Platform will bring together St. Jude, WHO, UNICEF, PAHO, governments, the pharmaceutical industry, non-governmental organizations and the non-profit sector to ensure an uninterrupted supply of quality and effective cancer medicines for kids with cancer.

This effort will increase the global visibility and predictability of the market for childhood cancer medicines by offering a comprehensive solution that forecasts the needs of individual countries and provides the mechanism through which quality and safe medicines are procured and distributed.

“Unless we address the shortage and poor quality of cancer medicines in many parts of the world, there are very few options to cure these children,” said Carlos Rodriguez-Galindo, MD, executive vice president and chair of the St. Jude Department of Global Pediatric Medicine and director of St. Jude Global. “Health care providers must have access to a reliable source of cancer medicines that constitute the current standard of care. We at St. Jude, with our co-founding partners at WHO and many vital partners around the world, can help achieve that.”

The hope is that this Global Platform creates a sustainable, long-term solution for pediatric cancer treatment. St. Jude and WHO are working closely with participating countries to create long-term solutions, including local capacity building, data sharing and policy development. This helps ensure that countries can eventually maintain access to essential medicines independently and provide quality care to children with cancer for generations to come. This collaboration will also improve medicine distribution, monitor usage and train health care workers to ensure that cancer medicines are used effectively and reach the children who need them most.

After six years, the Global Platform will evolve into a multi-donor trust, where countries support continuous access to lifesaving medicines and potentially address broader health care challenges such as improving diagnostic capacity and treatment of other rare diseases.

For partners in Zambia and around the world, the Global Platform represents a chance to improve survival rates for children.

Treatments developed at St. Jude have helped raise the survival rate for children with cancer in the United States, where 4 out of 5 children survive cancer. In many countries, however, only 1 out of 5 children who develop cancer will survive.

St. Jude, the first and only WHO Collaborating Centre for Childhood Cancer, co-launched the Global Initiative for Childhood Cancer (GICC), aiming to increase survival rates for six treatable cancers in low- and middle-income countries from 20 percent to 60 percent by 2030.

 “Danny Thomas’ dream that we all believe in was that no child should die in the dawn of life,” said  Nickhill Bhakta, MD, an associate faculty member of the Global Pediatric Medicine Department and director of the Sub-Saharan Africa region for St. Jude Global. “That dream does not stop at our walls in Memphis. That is not limited by our borders in the United States.”

Holding on to hope

David Kombe, chairman of Kayula Childhood Cancer Foundation, a non-governmental organization in Zambia that provides non-clinical support services to children with cancer and other life-threatening blood disorders, has seen cases of children who went to the hospital only to find chemotherapy unavailable. He’s seen families abandon treatment altogether because they’ve had to wait so long. And he’s seen children die because of medicines that never arrived.

Many children who develop cancer in low- and middle-income countries go undiagnosed. While there are often challenges with children gaining access to clinics qualified to make such a diagnosis, there are also other considerations to take into account. Kombe recalls asking one of the doctors why they didn’t encourage more parents to seek a diagnosis for their sick children who may have cancer.

“He said to me: ‘That would be immoral. It would be very immoral of us to do that because we will encourage people when we do not even have the medication and the equipment and the personnel to support the numbers that would come,’” Kombe said.

Being part of the Global Platform will change the situation when it comes to survival rates.

“We know that more and more lives will be saved,” Kombe said. “And there’s no higher calling or no other gift that any of us can give apart from life. And if we can save one life, we will have done wonders.”