Neurotechnology Industry Organization Public Policy Tour Visits Capitol Hill

by James Cavuoto, editor

Representatives from several neurotechnology firms and nonprofit organizations took part in a public policy tour on March 29 in Washington, D.C. The event was put together by the Neurotechnology Industry Organization, as an effort to inform elected officials and policy makers about the opportunities and obstacles facing companies and organizations working to improve the lives of those with brain and nervous system illnesses.

A key topic of discussion with members of Congress was the group’s National Neurotechnology Initiative (NNTI), a proposed federal research and development program designed to coordinate balanced and focused strategic investment across multiple agencies to accelerate development of vitally important areas of the field. “The economic burden our nation faces due to brain and nervous system disorders is $500 billion and climbing,” said NIO executive director Zack Lynch. “Despite the large and growing unmet markets, massive economic cost, and untold human suffering, there are few effective treatments that delay, prevent, and cure chronic neurological and psychiatric diseases. The NNTI provides the means for the U.S. to secure leadership in neurotechnology and improve countless lives.”

During the day, executives from about 20 neurotechnology companies and organizations met with political leaders, including directors from the National Institutes of Health and the Food and Drug Administration to discuss the role their offices can play in improving fundamental brain-related research and bringing new treatments for nervous system illnesses more quickly to those in need.

“Today underscored the fact that illnesses like Alzheimer’s disease, epilepsy, depression, multiple sclerosis, Parkinson’s disease, stroke, and traumatic brain injury are problems that affect the entire community,” said Lynch. “Each of us, from lawmakers and regulators to researchers and physicians to everyday Americans has an opportunity to help meet the unprecedented demand for leadership, new technologies and community support.”

Participating organizations included Accera, Inc,, Acumen Pharmaceuticals, Adlyfe, Afferent Corp., Boston Life Sciences, Brain Resource Company, Concentric Medical, Cyberkinetics Neurotechnology Systems, Medical Device Network of Australia, NeuroScience Associates, Neurotech Network, NeuroVentures Capital, Posit Science, RemeGenix, Sound Pharmaceuticals, StemCells, Inc., Targacept, and the MIND Institute. Elected officials met with included congressmen Brian Baird, Joe Barton, Bart Gordon, Patrick Kennedy, Steve Chabot, John Duncan, Jay Inslee, and Todd Tiahrt plus U.S. Senators Bob Bennett, Benjamin Cardin, Pete Domenici, Byron Dorgan, Mike Enzie, Dianne Feinstein, Edward Kennedy, John Kerry, Herb Kohl, and Trent Lott.

Jennifer French, executive director of Neurotech Network and a user of neural prosthetic devices, was one of the participants. “We were the only non-profit organization attending the event,” she said. “Understanding the business implications and policy initiatives, our message during this first time visit was simple: ‘If we don’t get the devices and procedures into the hands of the patients for whom they are intended, then the money we spent in research and development is going to waste.’

“During the visits with legislative representatives, I joined the small team for each meeting and quietly listened as each business representative gave his/her case. Bringing my FES dog and pony show to each meeting, I had a different presentation. After explaining that I am a quadriplegic, I used the system to stand out of my wheelchair and said, ‘Devices like the one you see me using will never get to the market if we keep the policies that we have today. Things need to change.’”

Dennis Stephens from K&L Gates, a lobbying firm retained by NIO, suggested that what the industry needs is an op-ed piece with personal stories of people that use the devices and how they changed their lives, and experiences of denied access. Other key issues to mention are job creation, the halting of technology movement offshore, and the safety of the devices.