Weeks after its passage was blocked by Senator Bernie Sanders, the Mikaela Naylon Gives Kids a Chance Act has been signed into law.
Introduced by Texas Congressman Michael McCaul alongside 10 other representatives, the Give Kids a Chance Act aims to remove barriers in pediatric drug development and speed therapies to children who need them by incentivizing pediatric research and making needed changes to pediatric drug laws. The act includes provisions from four bills that were previously cut–the Give Kids a Chance Act, the Creating Hope Reauthorization Act, the Innovation in Pediatric Drugs Act and the RARE Act. According to Children’s Cancer Cause, the first allows researchers to study combinations of new cancer drugs which could unlock new cures for kids while the second incentivizes pediatric research by expanding the FDA priority review voucher program. Funding for the program expired at the end of 2024 and this act would reauthorize it until 2029. The Innovation in Pediatric Drugs Act ensures pediatric studies for possible new treatments are completed on-time while the RARE Act ensures pediatric drug research and development isn’t blocked from newly approved drugs that don’t impact pediatric populations.
The act is extremely important to the children and families facing pediatric cancer, like local child Joshua Quintern and his family. Last year, then 7-year-old Joshua, the oldest of four children, had an illness that wouldn’t go away, ultimately leading to a diagnosis of Burkitt’s Leukemia. Mom Chelsea describes it as the most aggressive cancer known to man, one that moves at a frightening pace and requires immediate, intense treatment.
Since his diagnosis, Joshua has undergone aggressive chemotherapy and surgery related to tumor involvement in his abdomen. He then completed immunotherapy, the first pediatric patient to use the protocol, and achieved remission. When the cancer returned, he underwent a stronger chemotherapy and CAR T-cell therapy.
A form of immunotherapy, CAR T-cell therapy engineers a patient’s own immune T-cells to recognize and attack cancer cells. The first CAR T-cell therapy was approved by the FDA in 2017 to treat children with acute lymphoblastic leukemia and has since been used in the treatment of both children and adults with blood cancers. National Cancer Institutes’ James Kochenderfer, M.D. said the therapy created treatment options for patients who were virtually untreatable.
In January, Joshua once again achieved remission. He and his family are currently in Philadelphia awaiting his bone marrow transplant scheduled for late this week.
Chelsea has advocated for the Give Kids a Chance Act, stating that children with cancer are often excluded from early access to promising treatments because of outdated regulatory barriers. The act represents a “critical step toward expanding research, modernizing clinical trials, and encouraging the development of treatments specifically for kids.”
The Give Kids a Chance Act 2025 was passed by the House Dec. 1 and renamed the Mikaela Naylon Give Kids a Chance Act. Naylon was a Colorado teen who advocated for children’s access to cancer treatment. She was diagnosed with osteosarcoma in 2020 at the age of 10 after which time she traveled the country pursuing treatment and advocating for children with cancer. She passed away Oct. 29. More than 300 Representatives signed on as cosponsors of the bill including eight from Virginia. Among them was 7th District Representative Eugene Vindman.
When the bill reached the Senate, Sanders opposed it, demanding other funding efforts be included such as for community health centers. As the lone senator to vote against the bill, he kept it from advancing to the president’s desk.
That changed this week when the bill was included in the government funding bill signed into law. Last month, supporters moved the bill forward by adding it to a multi-agency spending package.
In a post to her social media, Chelsea said the bill should have passed by itself in December, but she’s thankful that kids like Joshua who need creative treatment options will have the opportunity to explore them.
“This moment is a result of our community’s collective, relentless advocacy and it means that more children will have a chance to beat cancer and live long, healthy lives,” officials with the Children’s Cancer Cause said.
