A Look Back on 2020: A Year of Challenge, Change, and Hope
As every year nears its end, we like to take the opportunity to pause and reflect on some of the year’s most notable moments for the childhood cancer community and for Children’s Cancer Cause.
Before we back it up to earlier in the year, we bring you this breaking news from the 11th hour of 2020:
Big Wins for Cancer Community in FY2021 Spending Bill, including Full Funding for the STAR Act!
Late on December 21st, after many delays and several short-term Continuing Resolutions, Congress finally passed an omnibus spending bill to fund the government for FY2021. The legislation now goes to the president for his signature.
This $1.4 trillion government spending bill to fund federal agencies - which was paired with an additional $900 billion COVID relief package - provides $42.9 billion for the National Institutes of Health (NIH), an increase of $1.25 billion above the FY2020 level. The NIH includes the NCI, which supports the Children's Oncology Group - the world's largest organization devoted exclusively to childhood cancer research. The NCI will receive $6.559 billion, a $119.5 million increase over FY2020 levels.
Beyond this record funding for the NIH, the final omnibus spending/COVID relief package includes many other hard-fought wins for the childhood cancer community to celebrate:
$30 million to fully fund the Childhood Cancer STAR Act for the third straight year;
$50 million to fully fund the Childhood Cancer Data Initiative for FY2021;
Pediatric and AYA cancers again included as a priority research topic for the Department of Defense’s Peer Reviewed Cancer Research Program, a program that received a $5 million funding increase in this package;
Reduction in medical expense deduction floor, a provision that allows individuals to deduct unreimbursed medical expenses that exceed 7.5% of adjusted gross income (instead of 10%);
The CLINICAL TREATMENT Act, a provision to require Medicaid to cover routine care costs associated with enrollment in approved clinical trials for those with life-threatening conditions; and
A four year extension of the Creating Hope Act, which incentivizes the pharmaceutical industry to develop pediatric cancer drugs that are otherwise cost-prohibitive.
The Big Story of the Year
Like all of you, our vision and many of our plans for 2020 took a sharp detour early in the year when the coronavirus pandemic hit like a tidal wave. Especially in those early days of the pandemic, the childhood cancer community was consumed by fear about what this novel disease might mean for children undergoing cancer treatment and to childhood cancer survivors with compromised immune systems.
We worked hard this year to bring families and survivors trusted information and advice from experts amid a rapidly evolving public health crisis, along with policy updates from Congress, NCI, CDC, and the FDA on COVID-related issues of relevance to our community, such as potential impacts on clinical trials and access to telehealth services.
In order to represent our community’s unique needs to policymakers during this pandemic, we conducted a survey of childhood cancer families and learned that experiences regarding disruptions to treatment or care varied widely. Some parents reported that regular scans and clinic visits were pushed back, sometimes by many months. Two-thirds of the childhood cancer families we heard from report experiencing a reduction in income as a result of COVID-19. Nearly 30 percent reported a loss of employment. Many families felt crippled by overwhelming anxiety, with some referencing COVID-19 as a PTSD trigger. One independent study found that over 40 percent of childhood cancer survivors reported their current mental health to be worse now than before the pandemic.
As the year went on and we learned more about the virus, researchers were able to provide some comfort to worried families of children with cancer. Data out of the UK Paediatric Oncology Coronavirus Monitoring Project suggests that children receiving cancer treatment are not at increased risk of developing symptoms from COVID infection and seem to recover well even if they do develop more serious symptoms. These findings back up other studies, including a small study of 20 positive cases in children with cancer at Memorial Sloan-Kettering reported in the spring. Researchers stress that there are still many unknowns, including long-term effects of COVID-19 on children, and that the research is based on very small numbers of children.
Through our work with coalitions such as One Voice Against Cancer (OVAC), the Cancer Leadership Council, and the Alliance for Childhood Cancer, we continue to monitor ongoing COVID-related policy needs on issues like restarting clinical trial research paused by the pandemic.
With the world so laser-focused on COVID – and on the November elections – it was especially challenging to capture lawmakers’ attention on other issues this year. Advocates were unable to march down the National Mall and into Congressional offices to share our stories and plead our case for support. However, we’re so proud of our community’s ability to pivot and still ensure that our voices were heard loud and clear by policymakers, through virtual lobby days and year-long grassroots action.
RACE for Children Act Took Full Effect
In December 2019, the FDA published draft guidance on implementation of the FDA Reauthorization Act of 2017 (FDARA) as it relates to pediatric studies of molecularly targeted oncology drugs. In response to this draft guidance, Children's Cancer Cause submitted official comments and continued to collaborate with FDA and other stakeholders in the following months.
The RACE provision of FDARA took effect on August 18, marking a landmark day for the childhood cancer community and an important milestone toward the ultimate goal of accelerating early pediatric evaluation of molecularly targeted cancer drugs.
This is a drug development issue that Children’s Cancer Cause has been engaged around since the beginning, working to modify the Pediatric Research Equity Act (PREA) to eliminate exemptions that have hindered the development of new childhood cancer therapies.
There is much more work to be done, but this year’s achievement of full implementation of the RACE Act is something we can all celebrate together as a big victory for our kids.
Record Number of College Scholarships Awarded
To help more childhood cancer survivors in this challenging year, we vastly expanded our scholarship awards in 2020. Our College Scholars Program typically awards two survivor students annually, but this year we were thrilled to welcome seven survivors into the program!
These survivors received a financial scholarship to help with academic expenses, and in the process gained valuable cancer advocacy experience.
Each member of our College Scholars Program completes a project of their choosing related to childhood cancer advocacy, with support and mentorship from the Children's Cancer Cause team.
Elevating the Unique Needs of Childhood Cancer Survivors
Launch of the Stewart Initiative for Childhood Cancer Survivors:
With generous support from the Stewart Family, Children’s Cancer Cause launched a series of initiatives in 2020 to address the medical and psychosocial care needs of pediatric cancer survivors. The online home of this new survivorship resource is www.childhoodcancersurvivorship.org.
As part of this Initiative, Children's Cancer Cause partnered with MyLifeLine to launch a discussion board for young adult survivors of pediatric cancer who are post-treatment to connect directly with other young adult survivors of pediatric cancer. This free online forum is a place to support one another with information, opinions, stories, and inspiration on topics like post-treatment challenges. You can find this new discussion board at childrenscancer.mylifeline.org.
Another component of the Stewart Initiative is the Champion’s Prize. Read on…
Texas Children’s Awarded Inaugural Survivorship Champion’s Prize:
Children’s Cancer Cause was proud to name Texas Children’s Cancer and Hematology Centers Long-Term Survivor Program as the 2020 recipient of the inaugural Survivorship Champion’s Prize, in recognition of the Program’s innovative work to provide comprehensive, integrated care for childhood cancer survivors.
The newly-established Survivorship Champion’s Prize will be presented annually to a group, program or institution making significant advances in programs and services to provide life-long health maintenance for survivors of pediatric cancers. The $10,000 Survivorship Champion’s Prize recognizes the importance of the unique challenges associated with post-treatment services for these survivors, especially as they transition to non-oncology adolescent and/or adult health care services.
Thanks to the generosity of the Stewart family, three other top-scoring applicants were also recognized with smaller awards in special categories of distinction:
· For Impact: The HEROS Clinic for Childhood Cancer Survivorship at Yale School of Medicine;
· For Collaboration: Children’s Wisconsin Next Steps Survivorship Program; and
· For Scalability: LITE Program for Pediatric Cancer Survivors at Rutgers Cancer Institute of New Jersey.
AHRQ to Assess Disparities and Barriers to Care:
Childhood cancer survivors face a lifetime of health risks and monitoring, in addition to psychosocial and financial challenges. Addressing the complicated needs of survivors and their families has been a special focus of Children’s Cancer Cause since our founding in 1999.
A critical provision from the original STAR Act language that might have been left unfulfilled if not for the follow-up and persistence of Children’s Cancer Cause relates to the lack of standards in follow-up care. This year, our efforts on this issue resulted in the HHS Secretary directing NCI to begin the process. Funding has been provided to the Agency for Health Research & Quality (AHRQ) to conduct an assessment of childhood cancer survivorship programs to give NCI the means of finally establishing definitive standards. This assessment will explore the disparities and barriers to survivorship care and the proposed strategies for addressing those barriers. Our Founder Susan Weiner has been enlisted as a “Key Informant” to help guide the work around this initiative.
Because of this accomplishment, childhood cancer survivors will one day soon have improved access to consistent, comprehensive, and effective long-term follow-up care. We extend gratitude to our Congressional champions, HHS leadership, and all of you - our partners, supporters, and advocates - for working together to launch this important survivorship work.
GAO Report on Access to Follow-Up Care for Survivors:
In late July, the Government Accountability Office (GAO) released a report on barriers to care for childhood cancer survivors - Survivors of Childhood Cancer: Factors Affecting Access to Follow-up Care (PDF). This report, which is an outcome of the STAR Act that we helped fight for, creates growing government acknowledgement about the unique needs and challenges facing childhood cancer survivors, a recognition that our community will need to leverage to make sure there are improvements in access and support.
The barriers identified in this report – affordability, knowledge, and proximity - form much of our agenda at the Children’s Cancer Cause as we craft policy solutions for childhood cancer survivors.
ACCELERATE's Dr. Gilles Vassal Awarded 2020 Rosen Research Award
In November, we awarded our 5th Annual Leonard M. Rosen Memorial Research Award to Gilles Vassal, MD, PhD, founder and chairman of ACCELERATE, a unique global platform working to advance innovation in cancer drug development for children and adolescents.
As the foremost pediatric oncologist in Europe, Dr. Vassal has held multiple leadership positions in pediatric oncology professional societies and is currently Professor of Pediatric Oncology at Gustave Roussy, a comprehensive cancer center in France.
“ACCELERATE is a multi-stakeholder international initiative with a very simple objective: work together to accelerate innovation for children and adolescents with cancer. We work together with clinicians and researchers, with industry, with regulatory networks and with patients, parents, and survivors,” said Dr. Vassal in his acceptance of the Rosen Research Award. “We succeeded in demonstrating that it is feasible, it is valuable, and it can really move the needle by finding solutions to identified issues.”
The $10,000 annual Rosen Award pays tribute to late Children’s Cancer Cause chairman and founding member Leonard Rosen and his many years of service on the Board of Directors.
Other notable news from 2020
Winter: Children’s Cancer Cause is playing a leadership role in the ACCELERATE initiative, an international platform uniquely structured to tackle the toughest questions in childhood cancer treatment and drug development. As a member of the steering committee, Children’s Cancer Cause helped to bring to fruition the first U.S.-based meeting in January, which took place in Philadelphia and focused on epigenetic modifiers.
Spring: A new biopharmaceutical company, Day One Pharmaceuticals, debuted in May, with a unique focus on pediatric oncology. While Day One aims to develop new agents to treat patients of all ages, the company is guided by lessons from pediatric oncology and is prioritizing promising new therapies that can be rapidly brought to market for children with cancer. Our Founder Susan Weiner joined other global pediatric oncology leaders in providing guidance and input to help Day One hit the ground running in pursuit of life-saving new therapies. (In November, Day One announced promising preliminary results of the therapy DAY101 for children with relapsed low-grade glioma!)
Summer: As the world turned its focus to a long overdue examination of race and systemic injustice, so did we. Children’s Cancer Cause released a statement renewing our commitment to addressing disparities in healthcare access, improving minorities’ quality of care, and fighting discrimination at every level. The national focus on such a critical issue launched a dialogue within the leadership of Children’s Cancer Cause that will continue to inform and guide our work in the coming months and years.
Awareness Month: This September’s Childhood Cancer Awareness Month featured virtual CureFest, virtual Hill meetings, and virtual candelight vigils. One highlight that was not virtual: the White House was lit up gold in honor of children with cancer and their families. Illuminating “The People’s House” is something that many vocal advocates in the childhood cancer community have been requesting for more than a decade, and we know how meaningful and significant this moment was to so many families.
Fall: Children’s Cancer Cause welcomed Steve Wosahla as our new Chief Executive Officer. Steve is an experienced leader in nonprofit management and patient advocacy and succeeds retiring CEO George Dahlman. Meet Steve.
