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READ MOREPublished on July 23, 2024 in AdvocacyEOY, ResearchEOY, Advocacy, Press Release
Landmark legislation aims to invest in research, foster collaboration, improve survivorship and quality of life, and raise awareness of key treatment considerations
National Brain Tumor Society, the largest patient advocacy organization in the United States committed to curing brain tumors and improving the lives of patients and families, is proud to share that a once-in-a-generation brain tumor-focused piece of legislation was introduced in Congress today.
The Bolstering Research and Innovation Now (BRAIN) Act (H.R.9113/S.4739) strengthens research efforts, accelerates the quest for cures, improves access to cutting-edge treatments, and innovates the way health care is delivered for patients with brain tumors and survivors. This landmark piece of legislation – a historic first for the brain tumor community – advances the quest to defeat brain tumors, once and for all, by increasing research funding, fostering collaboration, promoting critical awareness initiatives, and supporting innovations in and access to care.
In the U.S. Senate, the BRAIN Act is led by Senator Richard Blumenthal (D-CT), with original co-sponsors John Barrasso (R-WY), Jack Reed (D-RI), and Mike Rounds (R-SD). A companion version in the U.S. House of Representatives is being sponsored by Representative Susan Wild (D-PA), with support from Representatives Brian Fitzpatrick (R-PA), Lori Trahan (D-MA), and John Joyce (R-PA).
“To our knowledge this is the first-ever piece of legislation crafted to specifically address many of the unique challenges and opportunities facing the brain tumor community, while also tackling issues affecting millions of other patients with rare and especially deadly cancers,” said David Arons, President and Chief Executive Officer, National Brain Tumor Society. “We’re proud to have worked alongside all our champions in Congress to develop this multifaceted approach, which complements many current cancer-related policy initiatives. We thank these co-sponsors for recognizing the major unmet needs of this community and championing policies that bolster research, accelerate the quest for cures, and innovate the way health care is delivered for patients with brain tumors and survivors.”
The BRAIN Act addresses basic scientific research, early-phase drug discovery and development, clinical trials, diagnosis and treatment planning, and care and quality of life for those living with and surviving brain tumors. Specifically, the act includes:
The full legislative text of the BRAIN Act can be found here, and detailed background information can be found at BrainTumor.org/BRAINact.
“In my 12-year career as a practicing neuro-oncologist and clinical researcher, I’ve seen first-hand the devastating toll that brain tumors take on patients and families,” said Nicholas Blondin, MD, Associate Professor of Neurology at Yale School of Medicine. “I’ve also witnessed transformative changes in the way we treat other cancers, such as breast cancer, lung cancer and melanoma. Unfortunately, we have not experienced the same level of progress in the tools and treatment options for patients with malignant brain tumors. More concerted policies to adequately fund cutting-edge research, paired with initiatives to raise awareness about the advances that are currently happening in diagnostics and clinical trials, are essential. New models for addressing the challenges patients face in their brain tumor journey will greatly benefit efforts in the field of neuro-oncology to catch-up to the progress we have seen in treating other cancers.”
It’s estimated that more than a million Americans are currently living with a brain tumor, and over 90,000 more are expected to receive a primary brain tumor diagnosis in 2024. Nearly 19,000 Americans will die because of brain cancer this year. Brain tumors are the leading cause of cancer-related death in children 19-years-old and younger, accounting for three out of every 10 cancer deaths. More so than any other cancer, a brain tumor can have life-altering psychological, cognitive, behavioral, and physical effects. There are no known prevention or early detection methods, few available treatments, and there is no cure.
“In 2021, I lost my 28-year-old daughter, Jess, to glioblastoma, the most common and aggressive brain cancer,” said Jean Dalstad, a volunteer brain tumor advocate from Pennsylvania. “We scoured the country and tried dozens of different treatments for Jess, however none of them worked and many of them caused Jess physical and mental challenges. None of the drugs were actually brain cancer treatments, because she had already tried the standard chemotherapy for glioblastoma, which was developed over 40 years ago. I’ve devoted my life since her passing to advocating for brain cancer patients, as I know all too well the need for better treatments and better quality of life. I support the BRAIN Act because it would enact policies that are timely, comprehensive, and complementary toward advancing innovative treatments of brain and other rare and deadly cancers.”
About the National Brain Tumor Society
Building on over 30 years of experience, the National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver effective treatments, and advocate for patients and caregivers. Our focus on defeating brain tumors and improving the quality of patients’ lives is powered by our partnerships across science, health care, policy, and business sectors. We fund treatments-focused research and convene those most critical to curing brain tumors once and for all. Join us at BrainTumor.org.
TAGGED WITH: glioblastoma, advocacy, Clinical trials, brain tumor patients, brain tumor survivor, biomarkers, BRAIN Act