A Look Back at 2023: What We've Achieved Together
Thanks to you - childhood cancer families, friends, advocates, and supporters - we’ve been able to achieve so much in 2023. As the year comes to a close, we’re taking a look back at some of the most notable moments for the childhood cancer community and for Children’s Cancer Cause.
2023 was a big year for legislative achievements. To kick things off, President Biden signed the Childhood Cancer STAR Reauthorization Act into law just days into the new year. This was a major legislative victory that will impact the future of pediatric cancer research and the delivery of care for the rest of this decade and beyond. Reauthorizing this landmark legislation for five more years enables STAR (which stands for Survivorship, Treatment, Access, and Research) programs to continue making a life-saving impact for the 16,000 children in the U.S. who are diagnosed with cancer every year - and the more than 500,000 survivors who face a lifetime of health challenges due to their treatment.
Children’s Cancer Cause helped draft the original legislation (at the time, the largest childhood cancer legislation ever enacted) and chaired the Alliance for Childhood Cancer’s survivorship workgroup, which was instrumental in drafting the survivorship provisions within the recently enacted STAR Reauthorization Act.
At Children’s Cancer Cause, our policy work focuses on two main pillars: drug development and survivorship. We were successful in achieving the introduction of legislation on both fronts:
Survivorship: The Comprehensive Cancer Survivorship Act (CCSA) was reintroduced in both the House and Senate this summer, representing a landmark moment toward improved survivorship care to better meet the unique needs of childhood cancer survivors. The Comprehensive Cancer Survivorship Act addresses care planning, transition, navigation, reimbursement, quality, and the entire continuum of care. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall patient-centered quality of care and navigation needs of the nation’s 18 million cancer survivors of all ages. The bill has two childhood cancer provisions that Children’s Cancer Cause helped draft and provided technical feedback on.
Drug Development: Just this month, the bipartisan Innovation in Pediatric Drugs Act of 2023 (H.R. 6664) was introduced in the House. For the past several years, Children’s Cancer Cause has advocated that the Food and Drug Administration (FDA) have the same authority to penalize companies who fail to complete required studies for pediatric drugs as they currently have for studies of adult drugs. This bill strives to achieve that equity.
In support of these and other legislative initiatives, we’ve participated in lobby days on Capitol Hill, rallied support among our coalition partners and grassroots advocates, and joined in the inaugural Cancer Survivorship Summit hosted by Congresswoman Debbie Wasserman Schultz.
And you’ve had our back every step of the way by joining us in reaching out to Congress, sharing our posts, and spreading awareness in your community. You’ve sent hundreds of messages to Congress through our Legislative Action Center, and our Kids Action Network continues to grow in numbers and strength.
Sign up here to be a part of our legislative successes in the new year!
We welcomed ten students into the 2023 Class of our College Scholars Program. These students - all survivors of childhood cancers - are the embodiment of perseverance, and they have demonstrated a strong commitment to cancer volunteerism and advocacy. Each member of our College Scholars Program receives an academic scholarship and completes a volunteer project of their choosing related to childhood cancer advocacy, with support and mentorship from the Children's Cancer Cause team.
Among the ten scholars is Acute Myeloid Leukemia survivor Dahlia, our 2023 Stewart Scholar. Named in honor of John and Nancy Stewart, founders of the Children’s Cancer Cause Stewart Initiative for Childhood Cancer Survivors, the Stewart Scholarship is presented to a survivor who demonstrates exceptional potential to make a positive difference in the world.
Learn more about Dahlia and the other outstanding 2023 Scholars here.
This summer, we released a Voice of the Patient report stemming from our Externally-Led Patient-Focused Drug Development meeting on reducing cardiac late effects in pediatric cancer survivors.
The report - submitted to the Food and Drug Administration - includes survivor stories about challenges with everyday activities due to shortness of breath, racing heartbeat, fatigue, depression, and anxiety, in addition to testimony from parents whose children survived their cancer but later died from cardiac complications caused by the harsh, toxic treatments.
We further elevated the voice of survivors by presenting at a late effects symposium in Atlanta this summer. Our abstract emphasized the role of advocacy organizations like ours in improving survivorship care planning and informing public policy efforts by providing opportunities for childhood cancer survivors and caregivers to share their perspectives with stakeholders – such as our Annual Survey of Survivors.
In October, we named the Childhood, Adolescent and Young Adult (AYA) Cancer Survivorship Program at City of Hope as the recipient of the 2023 Survivorship Champion’s Prize, in recognition of their multidisciplinary approach to improving the quality of health and well-being of survivors. Since its inception in 2020, the Survivorship Champion’s Prize, a main component of the Stewart Initiative For Childhood Cancer Survivorship, has awarded $85,000 to a total of thirteen prestigious survivorship programs across the country, enabling these institutions to address disparities in access to care, enhance and expand healthcare transition programs, improve technology, and purchase tablets and books for clinic patients.
At a November event in New York City, we presented Steven Joffe, MD, MPH, with the eighth annual Leonard M. Rosen Memorial Research Award. Dr. Joffe is a pediatric oncologist with specialty in the ethical complexities of childhood cancer research. We also presented Vickie Buenger, PhD, with a Special Achievement Award for her dedication to children with cancer and her leadership in establishing the Coalition Against Childhood Cancer (CAC2).
Our community’s tireless push for progress is making a real difference: A recent CDC report revealed that the death rate for cancer among children in the U.S. is 24 percent lower than it was two decades ago.
The recent FDA approval of a new drug to reduce relapse risk in children with high-risk neuroblastoma is among the exciting advances in research from this past year. Children with high-risk neuroblastoma have one of the lowest survival rates of pediatric cancers, especially after relapse, and this new approval marks a major moment of hope for families.
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. And that number doesn’t include people like Ruthie, a woman in her twenties who died earlier this month from the lung damage caused by the treatment she received as a young child. Ruthie participated in both of our patient-focused drug development workshops, speaking up to the FDA about these devastating long-term effects. In fact, she’s the cover girl on our Cardiac Late Effects Voice of the Patient report (PDF). Her determination to be a voice for other survivors and newly-diagnosed children is part of the inspiring legacy she leaves behind.
Every child and survivor lost this year leaves a lasting imprint on those lucky enough to know and love them. Our thoughts are with their families every day, and especially during the holiday season.
We also remember and honor the legacy left behind by professionals who changed the face of pediatric oncology through their life’s work, including Sharon Murphy, MD, who passed away this year. Dr. Murphy was a visionary pediatric oncology leader who inspired patients, researchers, and advocates around the world. Her leadership helped shape the merger of the four major pediatric cooperative groups into the Children’s Oncology Group in 2000, and - among her many other accomplishments - she founded the Greehey Children’s Cancer Research Institute in San Antonio.
