Our 2024 Year in Review [and how hope turned to heartbreak in Decemberđź’”]
Thanks to the unwavering support of childhood cancer families, friends, advocates, and supporters, we've accomplished so much in 2024. It was a milestone year for our organization as we marked 25 years of creating a brighter future for children with cancer, survivors, and their families.
As the year comes to a close, we’re reflecting on some of the most significant moments - the good and the bad - for both the childhood cancer community and Children’s Cancer Cause.
Accelerating the development and availability of safe and effective therapies for children with cancer has always been one of our core mission goals. Children's Cancer Cause supported several important provisions to make therapies more available to children this Congress.
We seemed to make huge progress toward this goal in recent weeks with several pieces of legislation related to childhood cancer attached to the first year-end funding bill (Continuing Resolution, or CR) considered by Congress in the final days of this Congressional session. However, when Congress ultimately passed its year-end bill - the American Relief Act - it left kids with cancer behind and stripped out several key bills we worked on including: the Creating Hope Reauthorization Act, the Accelerating Kids’ Access to Care Act and the Innovation In Pediatric Drugs Act.
What happened? The American Relief Act was the third funding bill considered by Congress after days of tense negotiations on Capitol Hill. It provides fiscal year 2025 appropriations for continuing projects and activities of the Federal Government to federal agencies through March 14, 2025.
The first iteration of that bill - which seemed poised to pass with bipartisan support - included several important cancer provisions: It extended the Creating Hope Reauthorization Act — which incentivizes the development of drugs for rare pediatric diseases — through Fiscal Year 2029. It renewed funding for the Gabriella Miller Kids First Pediatric Research Program through Fiscal Year 2031. It also included the Accelerating Kids’ Access to Care Act, which recognizes that children enrolled in Medicaid may need to receive care from providers outside their home state and simplifies this process.
And we were especially pleased and proud that the initial year-end package included provisions of the Innovation in Pediatric Drugs Act, a bipartisan bill we have championed to strengthen the development of childhood cancer drugs. Children’s Cancer Cause has long advocated that the Food and Drug Administration (FDA) have the same authority to levy civil monetary penalties on companies who fail to complete required studies for pediatric drugs as they currently have for studies in adults. This bill strived to achieve that equity.
Unfortunately, the third and final CR, the American Relief Act, stripped out all of the above provisions. In the end, only the Gabriella Miller Kids First Pediatric Research Program passed as Congress separately extended the authorization bill.
What does this mean going forward? Needless to say, while we are deeply disappointed, we will forge ahead. When the 119th Congress convenes on January 3rd, 2025, we will start the hard work to rebuilt what was lost in the year-end shuffle and secure the enactment of these provisions. Kids with cancer have waited long enough. We look forward to working with our advocates and partners in the cancer community to fight for these important issues.
You can help right now by sending a message to your Members of Congress through our action alert. Join us and our allies in the cancer community in telling Congress that we expect children with cancer to be their first priority in this new Congress. Together we can send a loud, clear, and unified message to Congress that children with cancer must not be forgotten any longer.
Legislative advocacy goes far beyond the passage of a bill. After a bill is signed into law, we work closely with Federal agencies on its implementation, and we consult with experts on its effectiveness in improving outcomes for patients and survivors.
A prime example of this is the RACE for Children Act, which was passed back in 2017, and we continue to monitor its implementation and effectiveness. Our CEO Steve Wosahla attended an FDA Oncology Center of Excellence Pediatric Oncology Forum this fall, where he made remarks calling for the FDA to initiative a formal annual review of the Agency’s implementation of the RACE Act to determine its impact on pediatric oncology drug development.
On the survivorship front – another core pillar of our mission…
We issued a statement this fall calling on the greater healthcare system and provider community to work toward the successful health care transition of childhood cancer survivors.
This statement - Transitions in Care for Survivors of Childhood Cancer - was developed by Children's Cancer Cause alongside experts on our Survivorship Advisory Council. It proposes recommended actions to improve health care transitions for survivors of childhood, adolescent, and young adult cancers, including the development of a consensus process to determine best practices and standards of care.
In other survivorship news, the Penn State Health Children’s Hospital received our 2024 Survivorship Champion’s Prize, marking the fifth year that Children’s Cancer Cause has provided direct grants (totaling $95,000) to survivorship institutions around the country. Our Champion’s Prize is enabling these institutions to expand and enhance their services for pediatric cancer survivors. To leverage expertise at these clinics, Children’s Cancer Cause has been working this year with previous winners to information-share and identify common clinical issues that can best be addressed through collaboration.
We welcomed ten students into our College Scholars Program in 2024, all survivors of childhood cancers. These students receive a financial scholarship to help with academic expenses and gain valuable experience by completing a volunteer project of their choosing related to cancer advocacy. This year's class of scholars have launched projects that include state-level advocacy, the creation of a music therapy program, a campus survivorship support group, and improving care for Ukrainian children with cancer.
Just last month, we presented the 9th annual 2024 Leonard M. Rosen Memorial Research Award to Pamela Hinds, RN, PhD, FAAN, at our signature event in New York City. Dr. Hinds’ innovative research has articulated childhood and adolescent cancer patients’ and their parents’ experiences through all stages of treatment and care, and we’re grateful for her foresight in bringing the patient perspective toward advancing the next generation of safer, more effective therapies.
We’ve also added new ways for you to support our work this year.
Online streamers can now use their platforms to inspire viewers to donate, and shoppers can now purchase gifts through Mueshi where up to 25% of the proceeds support our mission. These new options add to an already expansive list of giving options, including donating cryptocurrency, appreciated stock, or used vehicles.
Devan, our 2025 Stewart Scholar, while in treatment for leukemia
As we step into the new year, our resolution remains unchanged since our founding in 1999: to keep advancing toward a world where every child with cancer can go on to live a long and healthy life.
We deeply mourn the loss of every child and survivor who passed this year – many decades too soon. Over 1,500 children and teens in the U.S. are estimated to have died from cancer this year alone. Every child and survivor lost this year leaves a lasting imprint on those fortunate enough to know and love them. Our thoughts are with their families every day, and especially during the holiday season.
In 2025, we'll continue empowering families to stay informed and become active advocates. Our public awareness campaigns will shine a brighter light on the challenges faced by children battling cancer and the 500,000 survivors dealing with long-term effects.
We’ll keep giving a voice to the unique concerns and perspectives of survivors by sharing findings from our annual survey of survivors and featuring survivors like Cierra and Juanita as guest bloggers. We'll also continue to support survivors through our Stewart Initiative website resources, our monthly Coffee Break email series, scholarships, direct support for survivorship clinics, and pushing for legislative progress.
While we celebrate the progress of this past year and the 25 years since our founding, there’s also more work to be done now than ever before. You are a key part of moving forward in this fight, and we hope we can count on your continued support of our mission.
As part of our anniversary campaign – which continues into the new year – we've launched a Silver Society to recognize donors who’ve given $250 or more this year. There’s still time for your year-end gift to count so we can include you in our 2025 annual report!
None of this would be possible without you. Thank you for standing with us as we make meaningful progress in the fight against childhood cancer.