National Brain Tumor Society Makes Commitment Inspired by National Cancer Moonshot Initiative
As the nation mourned the loss of former Delaware Attorney General Joseph R. (“Beau”) Biden III from brain cancer in the spring of 2015, the National Brain Tumor Society (NBTS) made a commitment to approach our mission to find better treatments, and ultimately cures for all brain tumors, with even greater vigor, resolve and urgency.
Malignant brain tumors, or brain cancer, have among the worst survival rates in all of oncology. As the largest patient advocacy and research funding organization dedicated to this community, the stories we hear daily from patients, survivors, caregivers, family and friends impacted by this devastating disease drive us to accelerate research via every avenue available — funding grants, advocating for key legislation that would bolster federal biomedical research funding, working with regulatory bodies to create “fast tracks” for promising treatments. Those who have faced this disease with such grace and strength inspire us to fight for better futures for patients and their loved ones.
And while none of the approximately 16,000 Americans that lose their lives every year because of brain cancer have been lost on us, the Attorney General’s passing, and the passionate and fervent response by his father, our great nation’s vice president, along with the support of the entire administration, struck a particular chord with our staff — myself included.
What was of great excitement to all of us at NBTS, was that the vice president was highlighting in his early work on what would be called the National Cancer Moonshot Initiative many of the same themes we had also identified as barriers to great progress for cancer patients: collaboration, team science, data sharing, speeding the traditional research process, increased funding, etc. We were beyond thankful and excited that Vice President Biden was shining a national spotlight on these issues and the need for a better path forward.
Our funded-programs like the Defeat GBM Research Collaborative and Defeat Pediatric High-Grade Glioma Research Collaborative — both audacious, major initiatives that are seeking to not only fund top-quality brain cancer research, but fundamentally change how research can be done in the 21st century to save time, money, and most importantly, lives — were already addressing the need to move beyond a passive and individual grant-funding approach toward true team science and collaboration in neuro-oncology. This, as both initiatives are multi-investigator, multi-institutional precision medicine-based models for collaborative brain cancer research, connecting world-class scientists from across the globe together through an infrastructure that enables easy sharing and collaboration between “cores” of research teams working synergistically on projects than encompass basic, translational, preclinical, and early clinical research. The cores operate in concert and simultaneously so that discoveries, data, and materials can move between steps in the R&D process with increased ease and speed, ultimately producing a portfolio of targets and corresponding potential therapeutic agents for early clinical testing.
At the same time, we have complemented these funded-research programs with a legislative and public policy agenda that advocates for policies that advance research and put more funding into the system. And our Clinical Trial Endpoints Initiative teams-up with other brain tumor advocacy groups — through the Jumpstarting Brain Tumor Drug Development Coalition — to work with the FDA to optimize the brain tumor drug development and approval process.
We were — and remain — unreserved in our confidence that these programs, working together, and in unison with the rest of the many great efforts occurring in the neuro-oncology field, will shape that better future for the brain cancer community we aspire to, and will get us there faster than historic efforts.
And yet, it was with our Chief Executive Officer, David Arons’, appointment and subsequent work with the Blue Ribbon Panel of experts that is helping to advise the Moonshot’s Taskforce that we became moved to take on another key priority for making our mission of a cure for brain tumors a reality.
David’s work on the Blue Ribbon Panel’s Clinical Trial Working Group, inspired NBTS to advance a new initiative, which will begin in the coming months, to address the critical barrier of clinical trial access and participation by cancer patients…in our particular corner of the cancer community, specifically, for brain cancer patients.
The challenge of clinical trial enrollment and patient engagement is a barrier to faster progress in all of oncology, but its affects are amplified in cancers with smaller patient-populations as well as in recalcitrant cancers with shorter life-expectancies, like brain cancer. Awareness, engagement, and education can empower patients to play a greater and more central role in the cancer R&D (and clinical treatment) process, and improve research through more, and better, clinical trials. Empowered patients have a greater ability to access cutting-edge care for themselves, and also help the research effort by providing real-world data to clinicians and researchers.
As such, in conjunction with the National Cancer Moonshot Summit, we are proud to announce for the first time our commitment:
National Brain Tumor Society is committing to the launch of a major engagement and education initiative to increase patient-centered drug development, with a particular emphasis on clinical trial participation among brain cancer patients. The objective of this initiative will be to improve brain cancer clinical trials and empower patients to be informed and active in the research and drug development process. As clinical trial participation in general is an area that the Cancer Moonshot Initiative has wisely chosen to include among its topics of discussion, NBTS is inspired to commit to leading a dedicated effort that will ultimately enhance access to, and improve the quality of, brain cancer clinical trials. This initiative will aim to advance drug development efforts across the neuro-oncology clinical trial landscape — including NBTS’ collaborative programs with clinical research components — creating systematic change in the field’s ability to fast-track clinical development of the most promising emerging brain cancer therapeutics.
We’re happy to make this commitment in support of our own mission, and in conjunction with the ideals and principles of the National Cancer Moonshot Initiative. We hope and encourage everyone to also follow the example and catalytic leadership Vice President Biden in making their own commitment — whatever they can do — to further our shared cause and future.
