Children's Cancer Is Unprofitable and Ignored; Every Year, the Number of Kids Dying of Cancer Grows, Yet New Medications to Treat Them Are Achingly Scarce

By Scudellari, Megan | Newsweek, July 31, 2015 | Go to article overview

Children's Cancer Is Unprofitable and Ignored; Every Year, the Number of Kids Dying of Cancer Grows, Yet New Medications to Treat Them Are Achingly Scarce


Scudellari, Megan, Newsweek


Byline: Megan Scudellari

John London wanted to scream in frustration. Penelope, his 4-year-old bike-riding, cupcake-baking daughter, was dying. And the goddamn doctors had nothing left to offer. After three years of chemotherapy, radiation, surgery and a bone marrow transplant, they suggested that John and his wife take Penelope home to enjoy their remaining time together. Instead, John began scanning hundreds of research abstracts from cancer conferences, seeking new treatments.

He spotted a case at the University of Vermont where a child with the same aggressive cancer as Penelope's--neuroblastoma, a cancer that originates in nerve tissue--went into remission after being treated with an anti-parasitic for an unrelated infection. The oncologist overseeing the case, Dr. Giselle Sholler, had followed up on the unexpected remission and had found that the anti-parasitic decreased tumor size in cell lines and mouse models by up to 75 percent.

John wanted the anti-parasitic for Penelope, but it was not approved for use in the U.S., and the manufacturer, Bayer, didn't have any: The U.S. Centers for Disease Control and Prevention (CDC) had stockpiled it for potential outbreaks of Chagas, a potentially deadly infectious disease mostly occurring in Latin America but increasingly seen in parts of the U.S.

Over two months, London enlisted a colleague to help him repeatedly call Bayer, the CDC and the U.S. Food and Drug Administration (FDA), which has the power to grant compassionate-use approval of unapproved drugs. Finally, he succeeded on all three fronts, and Sholler received the anti-parasitic to administer to Penelope. Six weeks later, she was running around a playground.

The Childhood Elephant

An estimated 2,000 children die of cancer each year, and the overall incidence of childhood cancer has been slowly increasing since 1975. Despite significant advances against certain pediatric cancers, including acute lymphoblastic leukemia, there are still some types of cancer for which there are few or no effective treatments. As John London found out, new drug development in the field is slow, often lagging way behind adult treatments, and few compounds are designed specifically for children. "I was on my own, as many parents are," London says. "The medical community had no interest."

That is in large part due to a practical reason: Childhood cancers make up less than 1 percent of all cancers diagnosed each year, according to the American Cancer Society. That 1 percent is not much of a market for drugmakers, who rack up an estimated $1.4 billion in out-of-pocket costs while bringing a novel drug to market. They would never recoup that treating the 700 children diagnosed with neuroblastoma annually, or the 100 diagnosed with diffuse intrinsic pontine glioma, a deadly brain tumor.

"The big elephant in the room is the cost of this type of research," says Raphael Rousseau, director of pediatric oncology drug development at pharmaceutical giant Roche. Combined with the small potential market, that's led very few pharmaceutical companies to invest in developing drugs for pediatric cancer. Merck has one ongoing pediatric oncology trial. Pfizer is testing preclinical therapies only. Novartis leads the pack, with seven drugs in clinical trials for children's cancer.

Where Big Pharma is absent, government has stepped in. Most pediatric clinical trials are operated by the National Cancer Institute's (NCI) Children's Oncology Group (COG), which runs approximately 40 to 50 therapeutic trials across the country at any one time, according to Peter Adamson, chairman of the organization and a pediatric oncologist at the Children's Hospital of Philadelphia. Yet even with federal funding, pediatric cancer research receives only a fraction of the money that adult cancer research gets, and it's decreasing. In 2013, the NCI invested $185.1 million from a $4.79 billion budget in pediatric cancer research, the lowest amount since 2009. …

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