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Your Advocacy in Action in 2023

Published on January 10, 2024 in Advocacy

Your Advocacy in Action in 2023

Every year, NBTS advocates for changes to public policy that would help get us closer to our vision: to conquer and cure brain tumors — once and for all. Thousands of volunteer advocates, like you, from all fifty states and D.C. are powerful and influential by urging elected officials to support NBTS’s policy agenda. You successfully take action by writing letters, sharing our action alerts on social media, and participating in meetings and major events like Head to the Hill

Thanks to your efforts, elected officials took action in 2023.  We’re pleased to highlight several of NBTS’s policy priorities that were advanced and accomplished this year. Click on a highlight below to see the impact made in 2023:

NBTS helped secure 109 co-sponsors in the House and four new co-sponsors 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 receive Medicare coverage immediately.

NBTS helped advocate for continued investments into ARPA-H (the new federal health agency charged to innovate research and health care solutions for patients with cancer and other diseases). 

Investments in therapeutic interventions are vital to developing novel treatments and personalized approaches for difficult-to-treat cancers such as glioblastoma. Thanks to the advocacy of NBTS advocates, the House of Representatives Labor, Health, and Human Services Appropriations Sub-Committee directs ARPA-H to make a significant investment of no less than $100M to support pre-clinical and clinical trials, including the evaluation of immune-based therapies, targeted therapies, and combination treatments. This investment will create opportunities to discover new treatments for patients with brain tumors.

NBTS and thousands of our amazing volunteers advocated, as part of the Alliance for Childhood Cancer, to ensure the Childhood Cancer STAR Act receives continued federal funding when a Fiscal Year 2024 budget bill is enacted. 

The Senate Appropriations Committee included language to fully fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative again this year in its Fiscal Year 2024 House of Representatives’ Labor-HHS Appropriations bill.

NBTS spearheaded efforts to ensure brain cancer and pediatric brain tumors were included as eligible priority research topics for the Peer Reviewed Cancer Research Program (PRCRP) at the Department of Defense, creating millions of dollars in funding opportunities for neuro-oncology researchers.

For the fifth consecutive year, NBTS worked with a dedicated bipartisan group of U.S. Senators and Representatives led by Senators Graham, Markey, Warren, Sinema, Kelly, and Scott and Representatives Mast, Auchincloss, Schakowsky, and Gallagher to introduce and pass a resolution designating the third Wednesday in July as a day to honor those impacted by glioblastoma and to raise this disease on our national priority list.

NBTS helped secure 19 co-sponsors in the Senate for the Palliative Care and Hospice Education Training Act (PCHETA), which advances palliative care education, awareness, and research and improves the quality of care for millions of patients and families facing chronic illnesses.

NBTS participated in the first-ever White House Cancer Moonshot Brain Cancers Forum on glioblastoma (GBM) and diffuse intrinsic pontine glioma (DIPG) to explore ways to accelerate efforts to develop innovative treatments and reduce disparities in access to care and clinical trials. NBTS brought a critical patient advocacy perspective and urged the Biden Administration to end cancer as we know it by both speeding up research and improving the adequacy and affordability of specialized health care for patients with brain tumors.

This fall, NBTS advocated that Congress should come together to pass a Fiscal Year 2024 budget and avoid a looming government shutdown because it’s vital that the government can fund and conduct critical brain tumor research and treatment development activities. NBTS led advocacy efforts to ensure that Congress understands the negative impact on research from government shutdowns. 

On behalf of the brain tumor community, NBTS formally advocated for the Centers for Medicare and Medicaid Services (CMS) to create new billing codes to enable provider reimbursement for patient navigation services and expand health insurance network adequacy to include the top hospitals for brain cancer care. NBTS will continue to speak up to the federal Department of Health and Human Services to ensure that access to adequate and medically necessary cancer care keeps up with clinical advances and new treatments.

NBTS, throughout 2023, provided the FDA specific input on how the agency should consider clinical trial designs and quality of life benefit measurement.

NBTS Advocates in Action in 2023

Volunteer advocates from across the country joined together in an impressive effort to create change on behalf of the brain tumor community. NBTS welcomed 2,485 volunteers, representing all 50 states and D.C., as new brain tumor advocates this year.

Together, nearly 20,000 advocates made 8,372 connections with your legislators. Advocates were most active during Head to the Hill in May for our Brain Tumor Day of Action and in July for Glioblastoma Awareness Day. 

During Head to the Hill in Washington, D.C., and virtual Head to the Hill Fall, National Brain Tumor Society advocates held 427 meetings with legislative offices to speak on issues important to the brain tumor community. Each connection made with members of Congress puts us another step closer to finding a cure for brain tumors in the future and improving the lives of those affected by brain tumors now. Thank you for your dedication and truly impactful advocacy.

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

Thank you for your continued commitment to advocacy on behalf of the brain tumor community. With the amazing support of our 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. Together, with NBTS, you have made an impact!

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