On the heels of our annual advocacy day on Capitol Hill in Washington, D.C., Head to the Hill, where we bring volunteers from across the country to speak with members of Congress about the policies and bills that the brain tumor community would like to see policymakers support, National Brain Tumor Society (NBTS) held a different kind of event at the Capitol to further our engagement with leaders in Congress.
The event was a first-of-its-kind briefing for members of Congress and their staffs to specifically educate them on the underlying facts about the most common – and most deadly – type of malignant brain tumor, glioblastoma (or GBM). This tumor is of particular interest to many in Congress at the moment as their colleague, Senator John McCain (R-AZ), is currently living with a glioblastoma.
This “congressional briefing” was titled: “Defeating Brain Tumors: Advancing Discoveries for Glioblastoma (GBM),” and was generously hosted in the Capitol Building by Senator Lindsey Graham (R-SC), with co-host Congresswoman Barbara Comstock (R-VA), and in cooperation with Congressman Jim Langevin (D-RI), and honorary co-hosts, Senator Ed Markey (D-MA) and Senator Susan Collins (R-ME).
The event was the first of its kind to educate policymakers on the ins-and-outs of glioblastoma — the tumor type that led to the passing of Senator Edward “Ted” Kennedy and Joseph R. “Beau” Biden III, and now affects Senator John McCain — and why it so difficult to treat.
This type of briefing is a great complement to Head to the Hill, as it provides a “deeper-dive” for Congress on the issue that the public policy and legislation the brain tumor community supports are trying to solve. It provides a more comprehensive illustration of the technical side of the policy issue, which supplements and provides greater context to the personal stories and asks our brain tumor advocates shared with Congress just a week before.
“It was a privilege to host this congressional briefing on glioblastoma for my colleagues,” said Senator Lindsey Graham in a statement after the event. “Many of us have family and friends affected by it. When it comes to this kind of brain tumor, it’s very real to me. John, Ted and Beau Biden’s stories are going to shine some light on how so many families have been devastated by this disease.”
Senator Graham continued, “I’m not a scientist and I’m not a doctor, but I am willing to take public dollars to get a good return on investment,” when referring to medical research funding through the National Cancer Institute (NCI), adding that the NCI is a “national treasure.”
Finally, the Senator assured the brain tumor community that, “You’re being listened to and are in the fight in Washington.”
In addition to Senator Graham’s comments, the event featured:
Remarks from Elyssa Malin, an aide to Congressman Langevin;
A primer on brain tumors and the unique challenges of particular in glioblastoma by NBTS Chief Executive Officer, David Arons;
An overview of what we know about these tumors and emerging new discoveries about how we may be able to more effectively treat them, by Dr. W.K. Alfred Yung, from the University of Texas MD Anderson Cancer Center;
An account of what it’s like to live with this tumor by glioblastoma survivor, Bill Barone of South Carolina;
Examples of policies Congress could support to advance glioblastoma research from Mr. Arons; and
A closing speech on the importance of cancer research funding from Congresswoman Comstock.
Demonstrating the interest in tackling glioblastoma and brain tumors with more urgency in our nation’s capital, we were welcomed to a packed room with a standing-room-only crowd of 130 attendees, including: representatives from more than 15 congressional offices, 3 officials from National Institutes of Health and National Cancer Institute, 10 brain tumor and cancer advocacy organizations represented, and three major cable and network news stations attending (Fox News, CNN, and NBC).
“This event was a major step in the National Brain Tumor Society’s efforts to raise critical awareness for brain tumors, and glioblastoma in particular,” said Mr. Arons. “We are tremendously thankful to Senator Graham and his staff for helping us put this event on, and hosting us at the Capitol, as well as those members of Congress that joined Senator Graham in supporting the briefing. Finally, we thank our panelists, Dr. Yung and Bill Baron, two amazing representatives of the glioblastoma and brain tumor community.”
Glioblastoma forms in the glial tissue of the brain – the supportive “gluey” tissue that keeps neurons in place and functioning correctly. As such, glioblastoma is part of a group of tumors referred to as gliomas. Glioblastoma is the most common glioma, accounting for 55 percent of all these tumors, 47 percent of all primary malignant brain tumors, and 15 percent of all primary brain tumors, in general. Glioblastoma can also be classified as a WHO grade IV astrocytoma, as they originate in astrocyte cells.
Despite first being identified in the scientific literature in the 1920’s, there have only been four drugs and one device ever approved by the FDA for the treatment of glioblastoma. None of these treatments have succeeded in significantly extending patient lives beyond a few extra months. Currently, mean survival after diagnosis is only estimated at around 16 months with a five-year survival rate of less than six percent.
More than 12,000 estimated new cases of GBM will be diagnosed in 2018, and though a mean age at diagnosis is 64, this tumor type can affect anyone at any age, including children.
Dr. Yung highlighted the scientific and medical challenges – as well as emerging opportunities – toward changing the trajectory of these unacceptable numbers, noting that “we are making progress,” while 16-year GBM survivor Bill Barone commented on how his case makes him “one of the lucky ones,” though his diagnosis has made significant impacts on his life and resulted in a new normal.
In addition to the generosity of our congressional hosts that helped us secure a time and room for this important event, the briefing was driven in large part by the efforts of NBTS Board of Directors member Rob Burger, who kicked off the briefing with the story of his personal connection to the cause and a hearty welcome and thanks for all those in attendance.
David Arons wrapped up the event with the following remarks, “It is imperative that policymakers understand the burden brain tumors inflict on patients, their loved ones, society and the economy. While we greatly appreciate the significant increases in appropriations for cancer research Congress has provided in recent years, opportunities remain to build on this funding and develop and enact critical legislation that can do more to equip America’s talented scientific and medical workforces with the resources and tools they need to help end suffering from debilitating illnesses like glioblastoma. Ultimately, the medical research ecosystem – including research institutions, funders, government programs, and industry – must embrace the daunting and unique challenge presented by a cancer like GBM.
We urge that Americans, join in support, get-to-know, honor, remember and resolve to fight for the brain tumor community this May, during National Brain Tumor Awareness Month.