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Advocacy Is Making a Difference

June 13, 2024
3 min read
Woman in lab with vials and syringe

The childhood cancer community is filled with passionate, dedicated advocates rallying together to make a difference for kids with cancer and childhood cancer survivors. Thanks to the tremendous advocacy of the childhood cancer community, Congress, the Administration, and the National Cancer Institute (NCI) are taking notice.

Over the last six years, childhood cancer advocates have successfully lobbied for meaningful policies and changes. Back in 2018, Congress unanimously passed the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, the most comprehensive childhood cancer legislation in history.

And the community’s advocacy didn’t stop there. Each year since the STAR Act was signed into law, Congress fully funded the programs STAR created, providing $30 million each year in new resources for childhood cancer. In 2022, Congress reauthorized the STAR Act for an additional five years, which will allow the programs from the STAR Act to continue through 2028.

On the heels of the success of the Childhood Cancer STAR Act, the Childhood Cancer Data Initiative (CCDI) was created in 2019 with the goal of funding $50 million in new childhood cancer research each year for ten years. As with the STAR Act, the childhood cancer community has successfully advocated for full funding for CCDI each year. That means Congress has provided more than $300 million in new resources for childhood cancer since the STAR Act and CCDI were created.

These programs have led to incredible advances in childhood and AYA cancer research. Through STAR funding, the National Cancer Institute (NCI) has worked to bolster biospecimen collection and biobanking, particularly for cancer types that lack effective treatments. NCI has also expanded research into survivorship and ways to improve care and quality of life for childhood cancer survivors. The CCDI has created a data ecosystem that is bringing together data from across the world so that researchers can develop better treatments for children experiencing cancer.

These accomplishments in advocacy are also changing the research landscape at NCI. For many years, the childhood cancer community has rallied around a particularly startling statistic: Less than 4% of the National Cancer Institute’s (NCI) budget funds childhood cancer research. This number so strikingly sums up the frustration about the lack of investment in treatments for kids with cancer and the slow pace of research. The 4% statistic has been a rallying cry for the childhood cancer community to demand better for kids with cancer – and after years of advocacy for more federal research funding, that 4% statistic has indeed changed. Thanks to the tremendous advocacy of St. Baldrick’s advocates and the childhood cancer community, NCI has more than doubled its investment in childhood cancer research in recent years.

The groundswell of advocacy and the investments foundations like St. Baldrick’s makes in early-career researchers and groundbreaking research have paved the way for more funding for childhood cancer research at NCI. In federal fiscal year 2020, NCI spent more than $500 million on childhood cancer for the first time, representing nearly 8% of its total budget that year.

Bar graph showing the National Cancer Institute's investment in childhood cancer research from 2015 to 2022. 2015: $295M (5.96%), 2016: $290M (5.57%), 2017: $352M (6.24%), 2018: $413M (6.97%), 2019: $438M (7.3%), 2020: $502M (7.87%), 2021: $566M (8.78%), 2022: $554M (8.10%). The graph highlights that the investment has more than doubled from 2015 to 2022. The 2021 and 2022 bars are yellow, and the rest are blue. The text notes that more research funding is needed to develop safer therapies for kids with cancer. The percentage reflects the share of pediatric cancer funding across total NCI obligations.

But the work doesn’t stop here. The St. Baldrick’s Foundation will continue to keep up the pressure for more funding to develop new, safer therapies for kids with cancer.

Take action today to help #ConquerKidsCancer.
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