Advocacy for Pediatric Cancer: The Fight for the Give Kids a Chance Act

In October 2021, five-year-old Kasey Zachmann faced a devastating diagnosis: medulloblastoma, an aggressive form of brain cancer. For nearly four years, her mother, Alyssa Zachmann, tirelessly advocated for better treatments and raised funds for research, always holding onto the hope that a miracle drug would emerge. Tragically, Kasey passed away in August, marking a heartbreaking loss for Alyssa and countless other families grappling with similar challenges.

A Moment of Hope Turned to Despair

Just four months after Kasey’s death, Alyssa found herself in the Senate gallery, anticipating the passage of the Mikaela Naylon Give Kids a Chance Act, a legislation aimed at providing hope to families battling pediatric cancer. Instead, she witnessed Senator Bernie Sanders block the bill, leaving Alyssa and many others in despair.

“I thought about all the families today who are in the same position we were three years ago,” Alyssa shared. “Not passing this bill destroys their hope.”

The Bill: A Beacon of Hope

The Give Kids a Chance Act, which passed the House unanimously in December 2024, aims to incentivize pharmaceutical companies to invest in drugs for rare pediatric diseases, including all forms of pediatric cancers. Despite receiving overwhelming bipartisan support and approval from 99 senators, the bill was stalled by Sanders, who insisted it be paired with funding for community health centers.

Key Features of the Give Kids a Chance Act:

• Priority Review Voucher Program: Provides pharmaceutical companies with vouchers that allow expedited reviews by the Food and Drug Administration (FDA) for pediatric treatments.
• Zero Cost to Taxpayers: Functions through regulatory mechanisms without requiring direct government funding.
• Increased Incentives: Aims to change the landscape for pediatric drug development, which has historically faced financial disincentives.

The Personal Impact of Advocacy

Nancy Goodman, founder of Kids v Cancer and a passionate advocate for pediatric cancer treatment advancements, knows the struggle all too well. Her son Jacob passed away from cancer at age 10 in 2009, and the drugs available at that time were outdated.

"There are no incentives for companies to develop drugs for kids with cancer," Goodman explained. “When society cares about other rare conditions, Congress creates incentives.”

The Complicated Legislative Landscape

Sanders’s opposition stems from past political troubles. In December 2024, the Give Kids a Chance Act was initially part of a larger healthcare package that included community health center funding. After public backlash from high-profile figures, including Elon Musk, who discredited the bill on social media, the proposal was abandoned.

"Three hours before the House vote, chaos followed, and our bill was stripped," Goodman recounted.

Widespread Support and Frustration

Even Senate leaders expressed frustration at Sanders’s stance. Senator Markwayne Mullin, a Republican, noted that concerns over pediatric health shouldn’t be shadowed by political maneuvering:

"He is literally killing kids in front of us because of his political movement," Mullin said.

Senator Maggie Hassan echoed similar sentiments, emphasizing the need to act swiftly for pediatric cancer solutions.

Voices of the Future: Children’s Perspectives

Logan Shenker, a young cancer survivor diagnosed with the same cancer as Kasey, shares his thoughts on the ongoing advocacy. At just nine years old, Logan endured intense treatment, facing significant long-term effects.

“The bill wasn’t dismissed because of any objection to the bill itself; it got tied up in politics. I think health should come first.”

Logan, alongside other young survivors, has actively lobbied for the bill on Capitol Hill over the past five years.

A Tragic Legacy

The legislation carries the name of Mikaela Naylon, a sixteen-year-old who fought osteosarcoma. Even in her final weeks, Mikaela lobbied for the bill, aiming to ensure that other children wouldn’t have to face similar struggles.

Advocates continue to push for the bill’s reintroduction, hoping it will appear in upcoming sessions, possibly as part of a continuing resolution.

The Call to Action

As families like the Zachmanns face unimaginable pain, the urgency to prioritize pediatric cancer research grows. Alyssa Zachmann urges lawmakers to consider the impact of their decisions:

“They have so much opportunity to save kids’ lives. What could be more important than that?”

Conclusion: A Collective Responsibility

The fight for the Give Kids a Chance Act exemplifies the critical intersection of healthcare policy, political will, and the imperative to advance pediatric cancer research. As communities rally behind this cause, the hope for a life-saving solution remains a pressing demand.

For more information on pediatric cancer advocacy and the ongoing efforts to support families, visit Kids v Cancer and stay informed about legislative developments affecting children’s health.

By blending personal experiences with vital legislative insights, we emphasize the importance of advocacy in fighting pediatric cancer while presenting a clear call to action.