Monday, February 24, 2025

Dear Chairman Guthrie, Ranking Member Pallone, Chairman Cassidy, and Ranking Member  Sanders, 

The undersigned represents more than 5,600 individuals who are directly impacted by childhood cancer, including survivors and their families, families who have lost children to this devastating disease, and the dedicated healthcare providers who treat America’s youngest cancer patients.  

Every year, one in 285 children in the U.S. will be diagnosed with cancer before their 20th birthday, amounting to approximately 16,000 new diagnoses. Despite the U.S. being the global leader in scientific innovation, most children diagnosed with cancer are still treated with drugs that were approved more than thirty years ago. In the past three decades, only seven new drugs have been approved by the FDA specifically for childhood cancer—compared to more than 200  new drugs approved for adult cancer. Unlike the majority of adult cancer clinical trials, which are industry-funded, most pediatric cancer trials depend heavily on federal funding from the  National Cancer Institute, leaving children with little choice but to endure outdated, toxic treatments. This means that most children continue to be “cut, burned, and poisoned” to “treat”  their cancer. These treatments can cause irreversible harm to children’s developing bodies and brains. Tragically, more than 95% of childhood cancer survivors will face severe health-related late effects by 45 years of age—complications primarily caused by the very treatments that were supposed to save their lives.  

On behalf of the American Childhood Cancer Organization, more than 5,600 voices are united in calling for your support in passing the Give Kids a Chance Act into law.  

Introduced on February 13, 2025, by Representatives Michael McCaul (R-TX) and Debbie  Dingell (D-MI), this pivotal bipartisan legislation includes several critical provisions: 

• A five-year reauthorization of the Creating Hope Rare Pediatric Priority Review  Voucher (PRV) Program, incentivizing the pharmaceutical industry to invest in pediatric drug development without imposing any additional financial burden on the federal government.

• The Give Kids a Chance Act, which grants the FDA authority to compel companies to study drug combination therapies in the pursuit of life-saving treatments for children.
• The Innovation in Pediatric Drugs Act, which introduces penalties to ensure that companies complete pediatric studies on schedule, bringing new hope for treatments and cures. 
• The RARE Act, strengthening the Orphan Drug Act to further benefit rare disease treatments.  

Children fighting cancer urgently need champions in the 119th Congress—heroes who will fight for a future where their diagnosis includes innovative treatments leading to a long-term cure. We are asking you to be our children’s heroes!  

Founded in 1970, the American Childhood Cancer Organization (ACCO), is the nation’s oldest and largest non-profit dedicated to childhood cancer. We advocate at both the federal and state levels and collaborate with the World Health Organization to improve global cure rates for childhood cancer. Notably, ACCO is the only national non-governmental organization actively  working at the state level. Since 2018, we have secured more than $120 million in state funding  for childhood cancer research across seven states. With our leadership in the childhood cancer  community, and our deep connections with patients, families, and advocates, ACCO is fully  committed to partnering with Congress to pass legislation that will address the immediate and  pressing needs of these young patients.  

We urge you to take decisive action and champion this critical legislation—because every child  diagnosed with cancer deserves the chance to grow up, live a full life, and become the next  generation of leaders, innovators, and advocates. “…because kids can’t fight cancer alone!®” 

Please feel free to contact Ruth Hoffman, CEO, at rhoffman@acco.org or by cell at 202-262- 9949 with any questions or other needs.  

Respectfully, 

Ruth Hoffman, CEO, American Childhood Cancer Organization

Stay tuned for potential updates and next steps! Together, we can help give kids a chance—because kids can’t fight cancer alone!®