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September Advocacy Alert: Current Legislation Impacting the Childhood Cancer Community

09/21/22

There are several pieces of legislation that the Pediatric Brain Tumor Foundation has recently endorsed and is actively monitoring that may help families facing a child’s brain tumor diagnosis.

Learn more about this legislation in this advocacy update, including which Senators and Representatives currently sponsor each piece of legislation. If one of your elected legislators is not a co-sponsor, you can contact their office and ask them to become a co-sponsor. Contact information for members of the Senate can be found here and House of Representatives here. If you have any questions about a specific bill or want to know how you can get more involved in PBTF’s advocacy efforts, please reach out to Mike Henry, our Director of Advocacy, at mhenry@curethekids.org.

Accelerating Kids’ Access to Care Act (H.R. 3089/S. 1544)

Many states lack healthcare facilities to treat some of the most complex and aggressive pediatric brain tumor diagnoses. As a result, many patient families travel long distances to seek treatment. The Accelerating Kids’ Access to Care Act, introduced in May 2022, is a critical piece of legislation that would provide children with brain tumors and other complex medical needs better and faster access to providers who can best meet their health challenges.

More than half of children in the United States rely on Medicaid and the Children’s Health Insurance Program (CHIP) as their primary sources of healthcare coverage, which limit patients to seeing providers in a child’s home state. If a child’s medical condition requires them to obtain care from an out-of-state provider, the provider must go through the screening and enrollment process in the child's home state Medicaid program. Providers regularly spend an immense amount of time addressing enrollment requirements, which vary significantly by state.

This current process causes burdensome, unnecessary delays in providing time-sensitive care, which can cause a child's condition to worsen. The Accelerating Kids’ Access to Care Act would address these delays by creating an alternative opt-in for provider screening and enrollment where providers in good standing could enroll in multiple state Medicaid programs, allowing them to provide essential, time-sensitive care to children who need it.

A full list of co-sponsors for the House version can be found here and the Senate version can be found here.

The Gabriella Miller 2.0 Act (H.R. 623/S. 1521)

Since the original Gabriella Miller Kids First Research Act was signed into law in 2014, the Kids First program has progressed toward understanding childhood cancer and disease. The law established the Ten-Year Pediatric Research Initiative Fund and authorized $12.6 million in annual funds for childhood disease research. It has also led to the founding of the Gabriella Miller Kids First Data Resource Center, a comprehensive data resource for research and patient communities meant to advance discoveries.

The reauthorization of this legislation passed the U.S. House of Representatives in July and has been sent to the Senate for their approval. A full list of co-sponsors for the Senate version can be found here.

The Childhood Cancer STAR Reauthorization Act (H.R. 7630/S. 4120)

First passed in 2018, the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act was the most comprehensive legislation addressing pediatric cancer in U.S. history. The STAR Reauthorization Act up for approval would provide an additional four years of funding for the program, which:

  • Expanded NCI authorization to collect biospecimen and crucial data for researchers
  • Provided funding to state cancer registries to collect information on childhood and adolescent cancer rates
  • Enhanced resources for researchers studying the late effects of childhood cancer 
  • Encouraged collaboration among providers to enhance the quality of survivorship care
  • Funded innovative research models of care for childhood cancer survivors
  • Required the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board 

A full list of co-sponsors for the House version can be found here and the Senate version here.

Clinical Trial Coverage Act (H.R. 8546)

Introduced in July by Reps. Jackie Speier of CA and Michael McCaul of TX, the Clinical Trial Coverage Act of 2022 would require insurers to cover out-of-network routine care for clinical trial participants if no in-network provider is available. This provision would ensure adult and pediatric patients can access clinical trials without paying significant out-of-pocket costs for physician services.

Current federal law already requires private insurers to cover routine services for clinical trials from in-network providers, but some patients may not have an in-network provider who offers access to a particular trial. For these patients, paying the full price for services in clinical trials may be their only option, excluding many from participating in these trials. The Clinical Trial Coverage Act would ensure that many of these patients can finally benefit from potentially lifesaving clinical trials.

PBTF was proud to endorse this piece of legislation when it was introduced. "Clinical trials aren’t a last resort or an after-thought for children with brain cancer. They’re a necessity,” said Courtney Davies, PBTF President and CEO. “Existing treatments are decades old and often do more harm than good to children’s smaller bodies and developing brains. Access to clinical trials and the potential for improved outcomes should not be a financial burden for families who are supporting their children through the toughest battles of their lives. The Pediatric Brain Tumor Foundation whole-heartedly supports the Clinical Trial Coverage Act, and we appreciate Reps. Speier's and McCaul’s hard work and dedication to children battling cancer and their families." 

PBTF is committed to making kids with brain tumors a national health priority, and these pieces of legislation hold the potential to provide families with much-needed relief and drive new scientific discoveries. You can make your voice heard and help us educate Congress about the need to pass this legislation by signing up to be an advocate with PBTF. Join our efforts at www.curethekids.org/advocate.