Brain Aneurysm Research Advocacy

On March 29, two of our members participated in a national Advocacy Day program for brain aneurysm research in Washington, D.C. Organized by the Brain Aneurysm Foundation and the Bee Foundation, the event drew approximately 100 survivors, caregivers and advocates from across the country.

 

A prominent D.C. law/lobbying firm, Arnold & Porter Kaye Scholer, not only organized meetings with members of Congress and their staff members, they also donated the staff time of 20 attorneys who accompanied groups as they made the rounds on Capitol Hill for a day-long series of meetings. 

 

The first step during each meeting was to run through the basics behind brain aneurysm:

  • An estimated 6 million people in the U.S. have an unruptured aneurysm.
  • That works out to about 1 in 50 Americans.
  • Each year, about 30,000 people in the U.S. will experience a ruptured aneurysm.
  • About 40 percent will die, immediately or within a few weeks.
  • Of those who survive, about two-thirds will suffer a permanent neurological defect.
  • Worldwide, half of the nearly 500,000 people killed annually by brain aneurysms are younger than 50.

The next step was to provide context for brain aneurysm research. At present the federal government spends about $5 million a year on brain aneurysm research.That’s about 83 cents a year for each person affected by the disease.This is far less than federal spending on research into cancers and other types of diseases.

 

The advocates had two basic requests in the meetings last month:

  • Support “Ellie’s Law,” which would provide $5 million a year for five years to the National Institute of Neurological Disorders and Stroke, for comprehensive research into unruptured brain aneurysms.
  • Support language in an Appropriations Committee report now being written that would encourage the National Institute of Health to boost support for brain aneurysm research.

 

Advocacy Day

This year Emily Liu and Bob White represented the Tri-State Brain Aneurysm Support Group at the advocacy event. We were paired with a survivor and caregiver from Hickory, N.C., and a lawyer from APKS.

 

The key part of our argument was that prevention -- including imaging, screening, and coiling and other interventional techniques -- can save huge amounts of money as well as personal harm, and that research is crucial to continuing recent advances in these areas. Bob and Emily met with the staffs of seven U.S. Reps. and Senators, including Sherrod Brown of Ohio and Mitch McConnell of Kentucky, former House Appropriations Chair Hal Rogers. We briefly met personally with Ky. Rep. Thomas Massie. On the flight home to Cincinnati they met (and lobbied) Reps. Steve Chabot and Brad Wenstrup. 

TSBASG members Emily Liu and Bob White at the Capitol.