Do no extra harm: Kids with cancer receive treatments designed for adults. Will a new law change that?

Most pediatric cancer patients are subjected to treatments that are not designed for a child’s developing body

Taylor Hurst, age 7, following an MRI session in May of this year, four months after she finished radiation treatment for her leukemia.

Taylor Hurst, age 7, following an MRI session in May of this year, four months after she finished radiation treatment for her leukemia.

Photo courtesy of Michelle Hurst

The American Girl doll that 7-year-old Taylor Hurst holds in the living room of her Rocklin home is bald. Taylor’s own hair is, just now, long enough to curl around her ears again, but she already has big plans for when it grows back. She wants to donate it to be made into a wig for other pediatric cancer patients.

Diagnosed at 5 years old with T-cell leukemia on January 16, 2016, Taylor became one of the nearly 15,000 people under the age of 20 who contract cancer every year in the United States, according to the Centers for Disease Control.

According to the Coalition Against Childhood Cancer, 4 percent of the National Cancer Institute’s budget is dedicated to pediatric cancer research. Parents and advocates say that is not enough when you consider how much life these children stand to lose.

Treatment options for children afflicted with cancer have been stagnant for decades, with only three new drugs developed specifically to treat childhood cancers since 1980, compared to the 190 new treatments that have been approved for adults in the last 20 years alone.

The Research to Accelerate Cures and Equity for Children Act that was signed into U.S. law August 18 aims to change that.

The RACE for Children Act is an update to the 2003 Pediatric Research Equality Act, or PREA, a federal measure that required pharmaceutical companies to ensure medications designed for adults are safe and effective in treating children. Because children are often afflicted by different types of cancers than adults, PREA did not cover many treatments, putting that R&D burden on nonprofit organizations.

However, recent research suggests that pediatric cancers show some of the same molecular targets as adult cancers. Therefore, it’s likely that the pharmaceuticals being researched for adults will be able to target pediatric cancers after more focused research, according to the office of Sen. Michael Bennet, who sponsored the new law.

The RACE law intends to close the loophole in research regulations and ensure that these new findings are being put to use.

“Childhood cancer patients face some unique challenges in addition to those that adult cancer patients have,” said Dr. Kent Jolly, a pediatric hematologist-oncologist at the Kaiser Permanente Roseville Medical Center. “Some specific cancers occur exclusively in children, so only specific pediatric research will improve the treatment of those diseases. … Many new drugs also lack the data on effectiveness, safety and proper dosage for use in children, because the pediatric testing process simply hasn’t been done.”

For Michelle Hurst, Taylor’s mother, there’s no question that the lack of pediatric cancer treatments was a calculated decision by pharmaceutical companies, which she thinks stand to lose money by creating more effective oncology treatments for kids.

Michelle Hurst lifts her daughter Taylor up to ring the bell that announces she has finished with radiation treatment.

Photo courtesy of Michelle Hurst

“With the advancements in technology these days, there is so much that can be done, but everything is just money,” Hurst said. “The pharmaceutical companies think that children are not profitable. Kids would get significantly lower dosage amounts than adults.”

As it stands now, Taylor has been on the same treatment regimen that her grandfather was when he was diagnosed with cancer in his 50s. And Taylor’s case is not the exception—many pediatric cancer patients are subjected to treatments that are not designed for a child’s developing body.

According to Dr. Jolly, these harsh treatments leave pediatric cancer survivors with a number of lasting side effects, “such as decreased fertility, a weakened heart, increased risk of obesity and more frequent secondary cancers.”

This was the case with Taylor Steele, 17, who died in 2011, two days before she would have started her senior year as student body president at Liberty Ranch High School in Galt. Diagnosed at 3 years old with nephroblastoma, a type of kidney cancer known as Wilms tumor, she survived treatment, only to be diagnosed with ovarian cancer at the age of 12.

Pediatric cancer research has largely become the responsibility of nonprofit organizations that depend on fundraising and private donations to fund their work. Among them are St. Jude Children’s Research Hospital, St. Baldrick’s Foundation, the American Childhood Cancer Association and Unravel.

“They’re all private,” Hurst said. “They’re getting bigger, but that’s only because more kids are getting cancer.”

In California, at least, Hurst’s claim holds true.

In 1988, when the state Department of Public Health’s cancer registry began to track the number of cancer diagnoses, 1,344 California children ages 0 to 19 were diagnosed with cancer, a rate of 15.9 of every 100,000 children. In 2014, the latest year for which records are available, the number peaked at 1,884 pediatric cancer diagnoses, or 18.4 of every 100,000.

In 2014, 66 of those cases occurred in Sacramento County, compared to 51 in 1988.

Still, the state doesn’t currently have any government agencies that oversee cancer research, says Shannan Martinez, a spokesperson for state Sen. Richard Pan, a doctor.

While it remains unclear when the RACE law will start to generate change, the prospect of more focused pediatric research is giving parents, survivors and their doctors hope that safer, more efficient treatment options are on the way.

For Hurst, who wore the gold ribbon that has represented Childhood Cancer Awareness Month for 20 years, the journey is personal.

“Nobody wants to see kids suffer … but I think that it’s our responsibility when we’re thrown into this, that we have to wake people up and open their eyes,” the mother said. Then, referring to the difference in public awareness between breast cancer and pediatric cancer, she added, “Everyone knows pink. Nobody knows what gold is.”