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National Brain Tumor Society Brings Realities of Glioblastoma to Congress

2018-05-16

National Brain Tumor Society and Senator Lindsey Graham Host Briefing on Glioblastoma to Educate Congressional Offices on Tumor Type Affecting Their Colleague, Senator John McCain


WASHINGTON, D.C. — National Brain Tumor Society (NBTS), the largest nonprofit dedicated to the brain tumor community in the United States, held a congressional briefing in Washington, D.C. for members of Congress and their staff, titled, “Defeating Brain Tumors: Advancing Discoveries for Glioblastoma (GBM).” The event, which took place on Capitol Hill, was hosted 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 brain cancer, particularly the most common and aggressive form of the disease, glioblastoma (GBM), 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 of Arizona.

“It was a privilege to host this congressional briefing on glioblastoma for my colleagues,” said Senator Lindsey Graham. “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.”

The event featured an opening speech from Senator Graham, followed by:

  • 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.

“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 – a truly devastating disease which impacts thousands of Americans every year, has few treatment options, and truly unacceptably low survival rates,” 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 today’s briefing: Congresswoman Comstock, Congressman Langevin and Senators Markey and Collins and their staffs. It’s a true testament to their commitment to helping advance progress against glioblastoma. There are a number of different pieces of legislation out there that relate to healthcare and science, and not everyone in this room agrees with each other on every piece of policy or bill. But the one thing that everyone that came here today can agree on is that we need to maintain robust funding for medical research, particularly cancer research. Finally, we thank our panelists, Dr. Yung and Bill Baron, two amazing representatives of the glioblastoma and brain tumor community.”

Mr. Arons added, “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.”

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.

Including glioblastoma, nearly 80,000 Americans will receive a brain tumor diagnosis in 2018, and with only a 35 percent five-year survival rate for primary malignant brain tumors, an estimated 17,000 people will die because of brain cancer this year. Brain tumors are now the leading cause of cancer-related death in children 19-years old and younger, accounting for three out of every 10 cancer deaths. There are no known prevention or early detection methods, few available treatments, and there is no cure.

About National Brain Tumor Society

National Brain Tumor Society (NBTS) is the largest nonprofit organization in the U.S. dedicated to the brain tumor community. We are fiercely committed to finding better treatments and driving rapid progress toward a cure for brain tumors. We drive a multi-faceted and thoughtful approach to aggressively influence and fund strategic research, as well as advocate for public policy changes, in order to achieve the greatest impact, results, and progress for brain tumor patients. Money raised by the generous donations of our supporters has directly funded groundbreaking discoveries, programs, clinical trials and policy initiatives. To learn more visit www.braintumor.org

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