AACR's Cancer Progress Report: Pediatric Cancer Takeaways
The American Association for Cancer Research (AACR) released its annual Cancer Progress Report this week. We have been digesting this thorough and thoughtful report and want to share some of the highlights — especially those that relate to pediatric cancer and to our work:
The report includes a reminder that all pediatric cancers are rare cancers and that this poses significant challenges for clinical trials - a problem that the Research to Accelerate Cures and Equity (RACE) for Children Act is working to address.
Children with cancer are among those most impacted by drug shortages. The report cites the vincristine shortage of 2019 as a prime example and includes recommendations from the FDA’s October 2019 report on drug shortages.
In a section about the impact of the Covid-19 pandemic on survivors, the report states that 50 percent of caregivers of childhood cancer survivors surveyed in April and May of 2020 reported delays or cancellations of follow-up appointments. This echoes what we heard from families in our own surveys.
Telehealth is another area where we have learned a lot from the pandemic. The report states that 95 percent of childhood cancer survivors with follow-up appointments conducted virtually expressed complete or high satisfaction with the experience. “Importantly, 66 percent of the survivors considered virtual visits as helpful or nearly as helpful as in-person visits, and 82 percent preferred that these visits remain an option after the pandemic.”
In a briefing announcing the report’s release, AACR’s CEO Margaret Foti, PhD, MD, talked about a key focus of the report, which is the impact of the National Cancer Act of 1971. As Dr. Foti notes, the Act heralded in fifty years of progress and led to a paradigm shift in how we look at cancer, leading to new diagnostics, interventions, and treatments. As we approach the December anniversary of the signing of this legislation, Children’s Cancer Cause will share more about this milestone moment in history.
Dr. Ned Sharpless, Director of the National Cancer Institute (NCI), spoke at the briefing about some of the biggest challenges that remain: Progress has not been experienced equally among all people, and the mortality gap for rural populations is becoming more stark. And while these complex and long-standing issues will not be solved easily, programs like the Cancer Research Data Commons and the Childhood Cancer Data Initiative (CCDI) are helping researchers make great strides. Dr. Sharpless assured the community that NCI is launching several new initiatives to improve accessibility and diversity in clinical trials, to connect rural communities to clinical trials, and to improve diversity among cancer researchers.
The report discusses policy achievements like the STAR Act, CCDI, Kids First, and the RACE Act, which are working to accelerate progress against childhood cancer and support survivors.
“Policies that encourage the development of new treatments for childhood cancers - and those that support survivors of childhood cancers - are critical to ensuring the best outcomes for every child impacted by cancer,” writes the report authors.
We thank AACR for addressing the power of patient advocates and patient advocacy organizations to positively influence and improve research, drug development, and legislation:
Patient advocacy is rooted in the right of all people to be informed and have as much participation and control as possible over their health care decisions. … Today, patient advocates have a substantial role in the development and regulatory review of potentially life-changing treatments at FDA and NCI.
The report concludes with a call to action, urging Congress to continue to support robust, sustained, and predictable growth for NIH and NCI. “As the United States recovers from the devastating toll of the COVID-19 pandemic, we are reminded of the enormous value of medical research in overall public health. . . With so many promising opportunities ahead of us it is critical that we maintain our momentum of progress against cancer.”
We join AACR in this call and invite you to “Write Congress” through the button below. We ask for passage of a complete budget that provides the NIH with $51.7 billion in Fiscal Year 2022.