In Washington, A Week of Hope and Remembrance
The naming of those children lost to childhood cancer—and the communal response when their names are said—is the most beautiful moment of CureFest, an annual gathering of childhood cancer families in the nation’s capital.
”All are angels,” we’re reminded from the stage.
As each name is read, it is a reminder that each child was deeply treasured and has been taken too soon. The affirmation when their name is read back gives a sense of comfort and power that comes from a community that mobilizes every September during National Childhood Cancer Awareness Month.
Stepping into Freedom Plaza, it’s hard not to be affected by the Angel Wall (pictured at right), which creates a long line of individual profiles of those who have been lost. It’s organized alphabetically by first name and gives power to each child whose own inspiration and personal story is part of a greater struggle.
The candlelight vigil that takes place on Saturday evening at CureFest is set between the Capitol - visible down Pennsylvania Avenue - and the White House, just a few blocks away further west. Children’s Cancer Cause was both a sponsor and exhibitor at CureFest, so - as our Chief Executive Officer - I had the opportunity to meet many families who signed up to receive our new advocacy toolkit and learn about joining our Kids Action Network.
It was great to see many who had completed their treatment stop by and talk with us, and it was so nice to meet folks in person that we have been working with virtually - like two-year-old Paisley and her mom Jessica, pictured below. Learn more about Paisley and her battle with leukemia here.
Throughout the month, Children’s Cancer Cause staff have been on Capitol Hill meeting with representatives seeking reauthorization of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. Children’s Cancer Cause worked hard to help pass the original bill in 2018, notable as the largest piece of childhood cancer legislation ever enacted. The STAR Act expands opportunities for childhood cancer research, improves efforts to identify and track childhood cancer incidences, and enhances the quality of life for childhood cancer survivors. To date, the bill has provided millions in federal research funds and elevated the understanding of pediatric cancer survivorship.
The reauthorization of the STAR Act was front and center at the gathering of the Congressional Childhood Cancer Caucus in the House of Representatives. Co-Chair Mike McCaul lauded his departing co-chairs Jackie Speier and G.K. Butterfield, both of whom are retiring, and welcomed incoming co-chairs Kathy Castor and Dr. Ami Bera. You can take action from home to build on this momentum and help ensure passage of the STAR Reauthorization Act.
The following day, I represented Children’s Cancer Cause at a forum at the White House in conjunction with President Biden’s Cancer Moonshot. The meeting (pictured at right) coincided with the president’s proclamation of National Childhood Cancer Awareness month and his endorsement of the re-authorization of the STAR Act for another five years.
The Moonshot seeks to end cancer as we know it by reducing cancer-related deaths by 50% over 25 years and improve the experience of people and their families living with and surviving cancer. This is especially important for pediatric cancer survivors who face a lifetime of health challenges caused by the toxicity of the treatment they received, including hearing loss, fertility issues, osteoporosis and cardiac late effects.
The forum also marked five years since the The Research to Accelerate Cures and Equity (RACE) for Children Act was passed. Working with the childhood cancer community, Children’s Cancer Cause helped lead the charge to pass legislation to ensure that potentially promising new oncology drugs in development for adults would be evaluated for their potential to treat children. The RACE Act, passed in 2017 as part of the FDA Reauthorization Act (FDARA), went into effect in August 2020. Under the RACE Act provisions, new adult cancer drugs and biologics whose molecular targets are substantially relevant to pediatric cancers must be evaluated for pediatric use.
The Government Accountability Office (GAO) is currently evaluating the initial outcomes of the RACE Act. As we have written to them, we have observed in reports by FDA representatives in meetings that indicate that companies have responded to the RACE Act by actively engaging the Agency in planning pediatric studies to meet the law’s requirements. Academic pediatric oncology researchers report that companies are now approaching them to help design and implement pediatric trials, requests which are unlike the past when sponsors were typically reluctant to have their drugs evaluated in children. In meetings in which we participate with other stakeholders, it is clear that the law has increased companies’ attention to the pediatric potential of their cancer drug pipeline.
September is always a reminder that much works still needs to be done.
Children affected by cancer face unique needs and challenges. Modern therapies are needed to increase survival rates among children with diseases resistant or refractory to current therapies and to decrease lifelong health impairments experienced by children treated with older standard chemotherapy agents.
We believe continued implementation of the RACE Act requires a determined response from Congress, regulators, clinicians and advocates to implement its promise of access to new more targeted cancer agents to treat children.
Despite progress, survival rates for many remain childhood cancers remains unacceptably low.
The night after the candlelight vigil, it was hard not to think about that. As families gathered the next morning at the Sylvan Theater in the shadow of the Washington Monument, a field of shoes covered the green lawn on the hill descending toward the stage (pictured at right). A handwritten sign noted that the 1800+ pairs of shoes represent the more than 1800 children in the U.S. whose lives are lost to cancer each year.
A tent set-up by the 1Voice Foundation provided personal expression activities for bereaved families. There were tribute bead stations and arts and crafts activities set-up for the brothers and sisters and family members who battled this devastating disease.
It’s particularly hard for those who come to CureFest each year knowing some of their friends would not be here. As the program’s speakers were interspersed with inspiring dance performances, a circle of young survivors grew larger and huddled together around the stage.
When leukemia survivor Meg Gallagher took the stage, she talked of the late effects she has experienced due to the toxic treatment she received. Her treatment, she noted, was not made for a teenage girl’s body. Now as a survivor, she has launched her own non-profit Meg’s Giveback that that gives back to kids with cancer through holiday toy drives, and she advocates for children fighting and those who survived or died from cancer.
“I have the greatest gift of surviving cancer.. which allows me to dream up a life for myself,” she said. “Not everyone is as lucky…the fact is that worldwide about a 100,000 children die from cancer each year…that’s 100,000 children who don’t get the chance to dream. “
She then said a list of their names, a long list that included Millie, Justin, Jocelyn, David, Scottie, Chloe, Ella, Sara, Megan, Kate, Beans, and Alex.
“We are all here today and have been here this weekend fighting for kids like these. Because no one hears our cries,” said Meg. “We are losing the gift of our children every single day. And that’s not okay. Because every kid matters. Because every dream matters.”