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Your Advocacy in Action

Published on January 3, 2023 in Advocacy

Every year, NBTS sets a policy agenda that supports the vision of our organization: to conquer and cure brain tumors, once and for all. Advocates like you push our priorities forward by emailing your members of Congress, sharing our action alerts on social media, and participating in virtual meetings and events like Head to the Hill.

Thanks to your efforts, elected officials understand the urgent needs of the brain tumor community. We’re pleased to highlight several of NBTS’s policy priorities that were accomplished this year, demonstrating monumental progress in our advocacy work. Click on a priority below to see the impact made in 2022.

Result: Congress provided $47.5 billion to the NIH for Fiscal Year 2023 (FY23), a $2.5 billion increase over FY22, and $7.1 billion to NCI, a $190 million increase over FY22.

Result: Congress provided $130 million to the PRCRP for FY23, the same level of funding received in FY22. NBTS spearheaded efforts to ensure brain cancer and pediatric brain tumors were included as eligible priority research topics. In addition, eight NBTS advocates served as consumer reviewers for the PRCRP program this year.

Result: Congress passed the reauthorization of the Childhood Cancer STAR Act — the most comprehensive childhood cancer bill ever signed into law — and provided $30 million to fully fund its initiatives in FY23.

Over 200 NBTS advocates supported its reauthorization during their in-district congressional meetings in Fall 2022.

Result: Congress provided $50 million to fully fund the Childhood Cancer Data Initiative, which will establish more efficient ways to share and use childhood cancer data in research efforts.

Result: Congress provided $1.5 billion for ARPA-H, a program to design and drive technology and research capacity improvements in cancer, including brain tumors.

Result: Kids First 2.0 passed in the House with six additional co-sponsors signing on to the bill in the Senate. Additionally, $12.6 million was provided to fund Gabriella Miller Kids First Research Act in FY23.

The passage of Kids First 2.0 will provide a new source of funding for the NIH Gabriella Miller Kids First Pediatric Research Program and continue the strong program established at the NIH.

Result: NBTS helped secure 23 new co-sponsors in the House and one new co-sponsor in the Senate for the Stop the Wait Act, which directs the Social Security Administration to phase out the five-month waiting period to receive SSDI benefits and allow those who are uninsured or unable to afford health insurance to immediately receive Medicare coverage.

Result: NBTS helped attain a two-year extension for telehealth flexibilities, which have enabled increased access to telehealth for Medicaid and Medicare beneficiaries since the start of the COVID-19 public health emergency.

Result: Congress passed reforms that are aimed at increasing the representation of diverse and underserved populations in clinical trials seeking FDA approval of drugs and medical devices.

Result: Congress passed reforms aimed at improving the FDA’s accelerated approval pathway to ensure greater confidence in the benefits of drugs approved through this critical pathway while maintaining the ability for promising treatments to receive expedited approval for patients.

Result: For the fourth consecutive year, Congress took bipartisan action to recognize Brain Tumor Awareness Month in May. This year’s resolution for Glioblastoma Awareness Day in July passed earlier than ever, tripling the number of cosponsors in the House to 13 representatives.

Lastly, with your support, NBTS took appropriate steps to influence additional key agenda items/issues, including:

  • Access to care issues
  • Drug pricing
  • Narrow insurance networks
  • Biomarker testing coverage
  • Regulatory policy

Become an Advocate

With the amazing support of volunteer advocates, NBTS fuels the voice and power of the brain tumor community to advocate and influence public policy to create cures and improve the quality of life we so desperately need. Your voice makes a difference. Become an advocate today and help shape the impact made on behalf of the brain tumor community.

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