New federal spending program raises concerns about funding for pediatric cancer research

WICHITA, Kan. (KWCH) – When the U.S. Congress passed the new spending package last December to avoid a government shutdown, nonprofit organizations involved in pediatric cancer research expressed concern about funding for research into cancer which was excluded.

Non-profit organizations like Pediatric Cancer Research Foundation say several measures have been eliminated, including the Accelerating Kids to Research Act, which would make it easier for low-income families with children on Medicaid to seek cancer treatment outside the state.

Other bills, including the Creating Hope Reauthorization Act, aimed at encouraging the development of pediatric cancer drugs, were also removed from the spending package.

A Wichita family has relied on out-of-state treatment and trial medications for their daughter, Adele, and says the funding has been key to getting her the care she needs.

Adele, 13, was diagnosed with AT/RT, a rare form of brain cancer shortly after her first... — Adele, 13, was diagnosed with AT/RT, a rare form of brain cancer, shortly after her first birthday.(KWCH)

Adele’s life changed 12 years ago, shortly after her first birthday. Adele’s mother, Melissa, says she noticed something was wrong with her daughter after she hit her head during a game night.

“She has so much personality, so when she stood up and made a funny face, I just thought she was Adele and she was making a funny face,” Melissa said. “I kept looking at her and said I don’t think she’s doing that on purpose.”

Adèle had facial weakness. Initially, doctors thought it might be due to a virus, but after weeks of no improvement, a doctor decided to schedule an MRI.

“When the neurologist said ‘we see something,’ I was in complete shock,” Melissa said. “Never in a million years would I have guessed she had a brain tumor.”

This is news no parent wants to hear. Adèle’s diagnosis was AT/RT, a rare form of brain cancer. Adele had only a 10 percent chance of living. The family’s only option was to fight cancer, and they did. They traveled to Missouri, Oklahoma and Tennessee to receive surgical, radiation and chemotherapy treatment.

The tumor was removed twice, but each time Adele relapsed and the cancer showed signs of coming back.

“The oncologist said, ‘You’re probably buying time, but she deserves a chance,'” Melissa said.

However, this opportunity did not come without risks and long-term side effects. Radiotherapy applied at a young age affected Adele’s growth and she had to take various trial drugs, some of which are not even marketed for brain cancer.

“We chose life and we would rather have a little Adele here with us than no Adele at all,” Melissa said.

Thanks to this trial medication, Adele remains active and recently celebrated her 13th birthday, while living her life with this tumor. Doctors told the family that the cancer had shown no signs of growth since she started taking the drug ten years ago.

Melissa says that without trial drugs and incentives for drugmakers to create new cancer drugs, she doesn’t know where her daughter would be. She added that these incentives are important in her daughter’s case, because according to National Cancer Instituteonly 73 people are diagnosed with AT/RT in the United States each year.

“If someone doesn’t inspire you to look for better medications, you’re not going to do it,” Melissa said. “You’ll be looking for what affects 10,000 or 20,000 people a year.”

Melissa believes her daughter is proof that funding pediatric cancer research should be a priority because these resources can help save more children with cancer like Adele.

“We know what this cancer is, and now here she is almost 12 years later, kicking butt and taking names,” Melissa said.

Although Adele’s family is not on Medicaid, they said if they were and it was more difficult to seek treatment outside the state, they may still be looking for answers since there is no treatment for AT/RT brain cancer in Kansas. Melissa told FactFinder that paying out of pocket wouldn’t have been an option either, as their insurance was billed for more than $1 million in processing fees.

The White family is campaigning, among other things, for more funding at the national level. The National Cancer Institute reports that only four percent of all government funding for cancer research goes to pediatric cancer research.

Congress ultimately passed the Gabriella Miller Kids First Research Act 2.0 as a standalone bill that funded millions of dollars each year to support research and cures.

FactFinder contacted Sen. Jerry Moran’s office to find out why the other pediatric cancer bills were removed from the spending package.

In an emailed response, Senator Moran’s office said: “Each of these bills was originally introduced as stand-alone bills, and Congress may still consider them as stand-alone bills if they they are reintroduced to the new Congress. »

His office added that it is common to include individual bills in larger packages to help move legislation forward quickly. The Gabriella Miller Kids First Research Act 2.0 received unanimous support.