A Look Back at 2021: A Year of Making Kids' Voices Heard
As each year nears its end, we like to take the opportunity to pause and reflect on some of the most notable moments for the childhood cancer community and for Children’s Cancer Cause.
“Just over a decade ago, pediatric cancer patients did not have a voice in Washington. Today, not only do they have a voice, they are a force to be reckoned with.”
POLICY PROGRESS: FORGING A PATH FOR KEY LEGISLATION
2021 began with a new Administration and the start of the 117th Congress - and a renewal of our policy priorities (see graphic).
Lawmakers showed their continued commitment to children with cancer by supporting full funding for the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative, support for the Kids First Pediatric Research Program, more resources for the FDA to effectively implement the RACE for Children Act, and record funding for the National Institutes of Health (NIH).
Unfortunately - but unsurprisingly - Congress was once again unable to see these commitments through to the finish line by passing a complete FY2022 budget by the start of the fiscal year in September. Congress has instead passed a series of temporary spending bills called Continuing Resolutions (CRs), which fund the government at current levels but pose an ongoing threat to progress and sustainability in medical research. We will continue to press Congress to pass a complete budget before the current CR expires on February 18th - an effort you can join in by participating in our action alert: Tell Congress to Support the National Cancer Institute.
In other Capitol Hill news, we’ve been making steady progress toward crafting a Center for Medicare and Medicaid demonstration program to develop standards of care based on Children’s Oncology Group guidelines for survivors of childhood cancer with a focus on scalable models across the United States. Toward this effort, we participated in a roundtable on cancer survivorship this summer where we represented pediatric cancer issues and shared our CAST Model proposal with a broader audience. And this fall, we have gotten much closer to the introduction of legislation that would include our proposals, a moment we have been working toward tirelessly. We are excited to bring you more updates on this legislative effort early in the new year.
Our policy work to improve survivor care aligns with three Agency for Healthcare Research and Quality (AHRQ) reports released in 2021. We’ve engaged closely with AHRQ on these draft reports, submitting comments and feedback throughout the year with specific recommendations, including our CAST Model proposal.
That's a wrap on #ActionDay2021. 4 Successful Zoom meetings with congressional staff members in order to share the importance of continuing to fund the #ChildhoodCancer STAR Act.
— SurvivingSurvivorship (@RMMcCallum) April 27, 2021
Another legislative area of considerable focus is the Prescription Drug User Fee Act (PDUFA), which is must-pass legislation in 2022 that we have spent much of 2021 laying the groundwork around. We are committed to ensuring that pediatric oncology is strongly positioned in this next reauthorization of PDUFA.
We are also engaged around “Cures 2.0,” a massive legislation effort to modernize the delivery of treatment to cancer patients and builds from the 21st Century Cures Act of 2016. Cures 2.0 and PDUFA are both mammoth pieces of legislation that we will keep you updated on as legislative action around them ramps up in 2022.
Much of our legislative energy in 2021 was focused on the day-to-day policy work involved in laying the foundation for an impactful, action-oriented 2022. With grassroots advocates like you on our side and standing strong with our coalition partners in the community, we look forward to some big legislative achievements in the second half of the 117th Congress.
ELEVATING THE VOICES OF CHILDREN WITH CANCER
At Children’s Cancer Cause, we focus on giving a voice to children with cancer and the nation’s 500,000 childhood cancer survivors. We tell their stories to lawmakers, regulators, and the general public, and those stories are helping to drive progress and create change.
Here are a few ways that we’ve worked to elevate voices from the childhood cancer community this year:
In February, we launched the first in a 12-part series written by guest blogger and childhood cancer survivor Rachel McCallum. We thank Rachel for using her voice to shine a very personal spotlight on some of the unique challenges and obstacles she has encountered as a long-term survivor. Her posts delved into complex and compelling topics, including disability rights, barriers to care, and systemic inequalities. You can find all of Rachel’s posts here.
Rachel’s guest blog series kicked off an expansion of our blog space, inspiring us to regularly provide guest content. Sometimes this is from our own staff - like our Program Director Julie who shared her own cancer experience. More recently, guest blogger Rose Joseph wrote about mental health concerns for survivors. If you’re interested in guest blogging in 2022, reach out and share your ideas!
In the spring, we collaborated with Pfizer, Inc., on a focus group around how to make better medicines to treat children and young adults. The survivors who participated were graduating high school seniors or college undergrads who recounted their experiences from treatment in childhood or younger teen years. The purpose of the focus group was to yield insights into how pediatric oncology medications are given and how patients experience the different ways they are formulated, with a focus on the outpatient experience. Here’s what we - and Pfizer - learned.
This summer, we surveyed childhood cancer survivors to ensure that we are best representing their unique needs and concerns in our program planning and our policy work. One out of every two pediatric cancer survivors we surveyed expressed a fear of relapse as one of their top three health concerns. More than half shared concerns about a secondary cancer diagnosis. Read on to discover more of what we learned from survivors this summer.
Related: We continue to gather input around the ongoing needs and concerns of childhood cancer families and survivors relating specifically to COVID-19. Hearing about your family’s experience is a vital part of our work to ensure that lessons learned from the pandemic are carried into the future: Take the survey.
This fall, we launched a new virtual series during Childhood Cancer Awareness Month, where we dive into timely and relevant topics with pediatric oncology experts and community leaders. Our “Conversations Series” features a new discussion every month, broken down into brief topical episodes that can be easily shared in a variety of formats. Since launching the series in September, we’ve already featured Conversations around progress against childhood cancer, survivorship, and drug shortages. Stay tuned to our Conversations Series page: our newest episodes will be added later this week!
EMPOWERING SURVIVORS TO BE FUTURE LEADERS
For the fourth year in a row, we awarded college scholarships to inspiring young adult survivors of childhood cancers. We were thrilled to welcome seven new survivors into our College Scholars Program in the spring of 2021, each of whom received a financial scholarship to help with academic expenses and the opportunity to gain valuable cancer advocacy experience with mentorship from the Children’s Cancer Cause team.
Just this month, we provided an update from some of our College Scholars Program Alumni: Celebrating Remission, Job Offers, and Bright Futures.
Early in 2022, we will open up the application form for next year’s scholarship program. Sign up here to be notified when the application is live!
REWARDING EXCELLENCE IN SURVIVORSHIP AND POLICY
This fall, we announced our two big awards of the year, which recognize excellence and outstanding contributions in the field of pediatric oncology, specifically survivorship and policy.
2021 Survivorship Champion’s Prize:
Our $10,000 Survivorship Champion’s Prize was awarded to the Cancer Survivor Program at Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, in recognition of their groundbreaking work to provide comprehensive, integrated care designed to maximize quality of life and long-term survival, in addition to conducting critical survivorship research.
The Survivorship Champion’s Prize is a component of the Stewart Initiative for Childhood Cancer Survivors, an educational program of the Children’s Cancer Cause. The Stewart Initiative was launched with generous support from the Stewart Family Fund. Thanks to the generosity of the Stewart family, three additional top-scoring applicants are being recognized with $5,000 awards in special categories of distinction. Look back at our blog coverage to learn more about all four institutions who received awards from us this year, plus read about how 2020 Prize recipients are utilizing their award funds to make an impact at survivorship clinics:
These 2021 awards are presented in memory of long-time Children’s Cancer Cause board member John Stewart, who passed away in September 2021. Learn more about the life and legacy of John Stewart.
2021 Rosen Research Award:
In tribute to the legacy of a founding board member and devoted childhood cancer advocate, the Leonard M. Rosen Memorial Research Award is granted annually to an individual who has made an outstanding contribution to childhood cancer policy and advocacy, recognizing the importance and unique challenges associated with the care and treatment of children with cancer.
This year, the Rosen Award was presented to Congresswoman Jackie Speier (CA-14), co-chair of the bipartisan Congressional Childhood Cancer Caucus and an instrumental voice in the passage of several significant pieces of childhood cancer legislation in recent years. In the Congresswoman’s honor, Children’s Cancer Cause designated the $10,000 award funds to the Children’s Brain Tumor Foundation in recognition of their excellence in the field of brain tumor survivorship. Learn more about Rep. Speier and past Rosen Award winners here.