Brain Aneurysm Research Advocacy

On March 20, 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 80 survivors, caregivers and advocates from across the country.

 

On a pro-bono basis, a prominent D.C. law/lobbying firm, Arnold & Porter, organized meetings with members of Congress and their staff members. The firm also donated the staff time of nearly two dozen 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 between $2 million and $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 their meetings on the Hill:

  • Support “Ellie’s Law,” which would provide $5 million a year for five years to the National Institute of Neurological Disorders and Stroke (NINDS), 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 -- the second in the row that the TSBASG has participated -- survivors Monica Young McCoy  and Bob White represented our group at the advocacy event. We were paired with a young man from New Jersey who survived a rupture at age 19 during soccer practice and went on to earn a PhD and launch a career in brain research. We were also joined at some meetings by a distinguished neurosugeon and a hospital administrator from the Philadelphia area.

 

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 Monica met with the staffs of five U.S. Reps. (including Thomas Massie of Northern Kentucky, who met with us in person) and three U.S. Senators, including Rob Portman and Sherrod Brown of Ohio and Mitch McConnell of Kentucky. On the flight in we had the chance to chat with U.S. Rep. Steve Chabot, and later had a formal meeting with his chief of staff.

 

There is nothing unique about what we were doing. Every day, organizations representing worthy causes and diseases from colorectal cancer to Alzheimers make the rounds on Capital Hill to lobby for more funding. Little wonder that convincing a Member to pick and choose among them is a hard sell.

 

All the more reason we were delighted to learn, a few days after we returned to Cincinnati from our trip, that the $1.3 trillion, 2,232-page omnibus appropriations bill passed by Congress and signed into law included a reference to two paragraphs in outside committee reports directing the NINDS to give an accounting of its spending for brain aneurysm research and awareness. A small step, perhaps, but from our perspective certainly a welcome one.  

 

 

TSBASG members Emily Liu and Bob White at the Capitol.