By Brianna Wilson
In a major win for young cancer patients and their families, Congress today passed several pediatric policies, including:
- The Accelerating Kids' Access to Care Act, which would offer a faster lane to care for kids that need out-of-state cancer care;
- The Mikaela Naylon Give Kids a Chance Act, which extends vital programs that support research for more effective pediatric treatments and incentivizes pediatric drug development;
- Crucial investments in pediatric cancer research and data infrastructure programs by once again fully funding the Childhood Cancer Star Act and Childhood Cancer Data Initiative;
- Increased funding for blood cancer research at the Department of Defense, the National Institutes of Health, and the National Cancer Institute; and
- Full funding for the Advanced Research Projects Agency for Health (ARPA-H)
These victories would not have been possible without the tireless advocacy of blood cancer volunteers, who held hundreds of meetings with lawmakers and sent them thousands of letters urging support for pediatric bills. That hard work underscores what we know to be true: patient stories make policies personal for lawmakers. We couldn’t be more grateful to everyone who raised their voices on behalf of kids. Together, we're unstoppable.
The Accelerating Kids' Access to Care Act
When kids with cancer and other complex medical needs require specialized care, they often must travel across state lines to find it. But approximately half of U.S. children are covered by Medicaid or CHIP. For them, seeking out-of-state care often requires a complex process of coordination between the health agency in the patient’s home state and the out-of-state provider, and that can take months. This regulatory burden can cause dangerous delays in care—when pediatric patients have no time to waste. Delayed care can lead to worse outcomes—or even death, in some cases.
That’s why Blood Cancer United has long championed the bipartisan Accelerating Kids’ Access to Care Act (AKACA), a bill to reduce the paperwork required of doctors and children’s hospitals treating children from out-of-state—and get children the care they need faster, with fewer paperwork delays.
The Mikaela Naylon Give Kids a Chance Act
The biology of kids and their cancers is typically distinct from the biology of adults and their disease. That adds complexity to cancer research—and it means that kids with cancer need specific, targeted treatments. But right now, drug companies don’t have strong financial incentives to develop new treatments for kids, and federal funding focuses on developing treatments for adult cancers. The Mikaela Naylon Give Kids a Chance Act (GKAC) will extend programs that support research for childhood cancer treatments and better incentivize pediatric drug development.
How we did it
Blood Cancer United adopted a multifaceted approach to ensure these policies crossed the finish line. Some actions include:
- Hosting numerous virtual and in-person events where volunteers and Blood Cancer United staff urged their members of Congress to support the bill, including several lobby days, two Dare to Dream Summits, and more. Advocates held nearly 350 Congressional meetings at the Dare to Dream events alone.
- Empowering volunteer advocates to send thousands of messages to lawmakers, urging them to support the policies
- Co-leading the Alliance for Childhood Cancer, an organization of leading national organizations representing pediatric patients, families and providers
- Creating and executing robust media relations and social media strategies
- Engaging key staff in vigorous lobbying efforts to ensure lawmakers were constantly reminded of the Blood Cancer United-backed priorities
Want to join our pediatric advocacy?
Sign up to receive our email alerts at BloodCancerUnited.org/RaiseYourVoice. We’ll let you know when and how to best reach your lawmakers, when kids need your voice most
