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Congress can impact progress for brain tumor patients

A patient and her family sit in a doctor’s office looking at an MRI image on a screen. Clearly visible is an ominous white mass. The doctor confirms their fears: it’s a brain tumor. There is deafening silence, anxiety and confusion, and then the inevitable question: “What are our options?” 

This scene plays out more than 69,000 times each year in doctors’ offices across the United States. Yet, for the many Americans facing a diagnosis this year, a startling lack of treatment options exist, and there is no cure. The average survival rate for malignant brain tumor patients is only 34 percent—and the majority of those who suffer from glioblastoma multiforme (GBM), the most common form of primary malignant brain tumor, do not survive past 15 months. 

{mosads}Brain tumors do not discriminate. They affect people of all ages, socioeconomic backgrounds, genders, and ethnicities. They strike adults in the prime of their lives and children just beginning to take flight. In fact, brain tumors are the leading cause of cancer related deaths in children under 14. 

While these statistics are alarming, there is great hope that past investments by Congress are ready to bear fruit for this patient population. But these seeds still need watering; there is more we must do together. 

Glioblastoma was one of the first brain tumors decoded through the government-funded program The Cancer Genome Atlas (TCGA). Because of congressional investment in this NCI program, new therapeutic approaches to treating this deadly cancer are emerging and are extremely well positioned to benefit from current momentum in the area of precision medicine. 

Thankfully, there is mounting energy in Washington to leverage the era of precision medicine and facilitate the discovery and development of new treatments for difficult to treat illnesses like brain tumors. The bipartisan 21st Century Cures legislation in the House of Representatives contains a number of critical provisions that can jumpstart new treatments for brain tumors and many other cancers while optimizing the FDA’s approval process. Likewise, the administration’s Precision Medicine Initiative could yield important results if the cancer drug matching trials at NCI are fully implemented. With scientists, doctors, patient advocacy groups and the health care industry at the table, these efforts highlight a great willingness inside the Beltway to cooperate on initiatives that address intractable diseases. It is imperative that these positive starts continue to be championed so that they result in increased funding and improved policy. 

The fight against pediatric brain tumors is another area where direct action from Congress can have a profound impact. Since its inception in 2009, the Peer Review Cancer Research Program – part of the Department of Defense’s Congressionally Directed Medical Research Programs – has been the source of critical funding  for  much-needed research into childhood brain tumors.  Ensuring pediatric brain tumors remain a topic eligible for funding is as easy as adding the words “pediatric brain tumors” into the FY2016 appropriations request. Three words can mean millions of dollars available to help combat one of the deadliest cancers for America’s youth. 

Finally, Congress can act to ensure cancer patients have access to oral chemotherapy—which for many brain tumor patients is the only treatment option available.  Taking their lead from the 39 states that have already enacted similar laws, Congress can fix this problem once and for all by simply requiring that if a health plan already covers chemotherapy, it should cover patient-administered chemotherapy on the same patient out-of-pocket cost basis as hospital-administered chemotherapy. Cost-sharing should not present an economic barrier to cancer treatment. The bipartisan Cancer Drug Coverage Parity Act and Cancer Treatment Parity Acts from the 113th Congress should be re-introduced and supported. 

While private philanthropy is a powerful driver of brain tumor research, awareness, and drug development efforts, its efforts are best realized when coordinated with the leadership role of government agencies in funding and advancing critical research. On the cusp of historical progress in a notoriously difficult-to-treat malignancy, now is the time to recommit to robust support for our country’s biomedical research infrastructure. When a family facing a terrifying MRI image asks “What are our options?” we should be able to provide them with better treatment, quality of life and ultimately a cure.

Davis is chief executive officer of the National Brain Tumor Society, the largest nonprofit organization dedicated to the brain tumor community in the United States.


Copyright 2023 Nexstar Media Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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