A Look Back at 2022: Survivorship in the Spotlight
As 2022 comes to a close, we’ve taken a moment to reflect on some of its most notable moments for the childhood cancer community and for Children’s Cancer Cause. Thanks to you - childhood cancer families, friends, advocates, and supporters - we’ve been able to achieve so much this year. We’ve improved the lives of survivors through scholarships and direct support of survivorship clinics, hosted an FDA-approved workshop on cardiac late effects, and drafted provisions of newly-introduced survivorship legislation - just to name a few things. Read on to learn about these and other 2022 achievements:
Early in 2022, we celebrated President Biden’s announcement of a renewed commitment to the Cancer Moonshot, a federal initiative aimed at accelerating the rate of progress against cancer, and the passage of a fiscal year 2022 spending bill that provided record funding for the National Institutes of Health.
This included full funding for the Childhood Cancer STAR Act, the Childhood Cancer Data Initiative, and the Gabriella Miller Kids First Research Act.
In April, the STAR Reauthorization Act was introduced in both chambers of Congress. The original STAR Act was signed into law in 2018 and authorized five years of funding at $30 million annually from 2019-2023. Children’s Cancer Cause helped draft the original legislation and, as it nears its expiration, we chaired the Alliance for Childhood Cancer’s survivorship workgroup, which was instrumental in drafting the survivorship provisions of this “2.0” version.
Reauthorizing this landmark legislation for five more years will enable STAR Act programs to continue making a life-saving impact for children with cancer and childhood cancer survivors. Efforts to pass this reauthorization will continue in the new year.
In May, we welcomed eight childhood cancer survivors into our College Scholars Program – a record number!
Among our Class of 2022 Scholars is thyroid cancer survivor and medical school student Francesca Olguin, our inaugural 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 Francesca and the other outstanding 2022 Scholars here.
Co-Moderators Steve Wosahla of Children’s Cancer Cause and James Valentine of Hyman Phelps & McNamara
Our big program of the year took place in September, when we hosted an FDA-approved meeting on reducing cardiac late effects in childhood cancer survivors. During this Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting, childhood cancer survivors and caregivers discussed the “ticking time bomb” of cardiac late effects caused by harsh chemotherapy and radiation treatments.
In January 2023, we’ll submit a Voice of the Patient report to the FDA, which will highlight the myriad issues facing pediatric cancer survivors and the need for progress in the development of future treatments.
Also in September – Childhood Cancer Awareness Month – we introduced a new Children’s Cancer Cause Advocacy Toolkit as a digital download.
This free guidebook provides basic foundational information for individuals interested in advocating in the fight against childhood cancer. It includes messaging strategies, relationship-building tools, practical step-by-step instructions for contacting and meeting with Members of Congress, and much more. Download your copy here!
Phoenix Survivorship Program team
In October, we named the Phoenix Children’s Hospital Survivorship Program as the recipient of our 2022 Survivorship Champion’s Prize, in recognition of their excellence in survivorship care.
We also named three additional top-scoring applicants with awards in special categories of distinction, for a total of $25,000 provided to help impactful programs around the country expand and enhance their survivorship services and initiatives.
October also brought the exciting news of FDA approval of sodium thiosulfate (STS), the first approved treatment to reduce the risk of chemo-induced hearing loss in pediatric cancer patients. In 2018, Children’s Cancer Cause hosted its first EL-PFDD meeting, on the topic of hearing loss, and STS was a hot topic of conversation.
This newly approved therapy protects the patient’s inner ear from the toxicity of the chemotherapy agent cisplatin, thus reducing the likelihood that a child will experience hearing loss.
(l-r) Children’s Cancer Cause Board Chair Adam Rosen, Dr. Malcolm Smith, and Children’s Cancer Cause Founder Susan L. Weiner
In November, we presented the 2022 Leonard M. Rosen Memorial Research Award to Malcolm Smith, MD, PhD, the Associate Branch Chief for Pediatric Oncology at the NCI’s Cancer Therapy Evaluation Program (CTEP).
The Rosen Award, now in its seventh year, honors an individual who has made outstanding contributions in the fight against childhood cancer.
Dr. Smith’s work has furthered the scientific understanding of the unique biology of pediatric cancers and the challenges associated with the care and treatment of the 16,000 children diagnosed with cancer each year in the U.S.
Children’s Cancer Cause CEO Steve Wosahla speaking at a Capitol Hill press conference on December 14, 2022
And, finally, we are closing the year out with a bang: On December 14th, we celebrated the introduction of The Comprehensive Cancer Survivorship Act, landmark legislation that aims to provide a lifeline to survivors and their families by addressing the entire survivorship continuum of care.
For years, Children’s Cancer Cause has worked closely with Capitol Hill staff on drafting this legislation and helping to ensure pediatric cancer survivor provisions were included in its bipartisan introduction.
Survivorship has been a core pillar of our mission since our founding in 1999, and our work this year hammers home that our commitment to improving the lives of the more than 500,000 childhood cancer survivors in the U.S. is stronger than ever.
Thank you for standing with us as we continue to make big strides in the fight against childhood cancer.