Finding a Cure for Brain Tumors Through Advocacy and Public Policy

Eliminating brain tumors means finding a cure for all tumor types, including ependymoma. To achieve this, David Arons, Chief Executive Officer of the National Brain Tumor Society (NBTS) and its Chief Public Policy and Advocacy Officer, is helping give the brain tumor community a voice.

“We are too small of a community to not be connected,” says Arons. “And we need to be heard because more federal research funding needs to go to brain tumor research.”

Since 2012, the NBTS has joined other disease organizations, like the CERN Foundation, at an event called Head to the Hill in Washington, D.C., to advocate to Congress.

“The federal government is the largest funder of biomedical research related to brain tumors,” says Arons. “So we need to encourage congress and the Administration to increase cancer research dollars.” And he believes their efforts have made an impact.

The overall amount of National Cancer Institute (NCI) funding for brain tumor research has increased from an estimated $140 million in 2012 to an estimated $170 million in 2017, according to Arons.

The Department of Defense (DOD) spending on brain-tumor related research has also increased. “A few years ago, pediatric and adult brain tumor researchers were applying for DOD funding from a pool of about $12 million. Now, that pool is $30 million,” says Arons. 

Shedding Light on This Rare Disease

I had two unmedicated C-sections, eight and five years ago. The tumor was blocking my spinal canal, therefore prevented the epidurals from working properly. I felt excruciating pain. We didn't know it at the time, but this was the first sign of the tumor presenting itself. None of the OBGYNs or anesthesiologists could explain what had happened but our daughters were born healthy and happy so we put the horrible cesareans behind us as best we could.

 Two years ago I began having sciatica pain - shooting pain in my lower back and alternating down each of my legs. I couldn’t walk, drive, sleep, or get through a typical day with my young daughters. I tried physical therapy and a number of different painkillers and muscle relaxers but it wasn't until I had a MRI a month later did we learn what was causing the pain and why the epidurals didn’t work.  A five centimeter ependymoma was pressing on my sciatic nerve.

Finding the Best Treatment

Once the shock of the diagnosis wore off, my husband I went into research mode and met with neurosurgeons at almost every hospital in the DC Metro area. We learned that most ependymomas are typically solid and can be removed by a skilled neurosurgeon in a relatively routine surgery. But mine was a bit more complicated. My first surgery was scheduled for April 2016.  Since my tumor was unencapsulated, the cells were spread throughout the lower section of my spinal canal and it was impossible to completely remove. My neurosurgeon advised just waiting and watching the remaining tumor tissue with annual scans. 

This was advice I just couldn’t accept.  I sought a second opinion at a CERN Center - the National Institutes of Health in Bethesda, Maryland.  I learned my best chance for complete and total remission would be to undergo a second surgery and a six week course of radiation to target every last cell.  In October 2016, I had a second surgery at the NIH, followed by six weeks of radiation. I now have follow-up appointments and scans every few months.