Printer Friendly

NCSCI research advocacy.

On January 25, 1994, Larry Callaghan, national vice president; Larry Johnston, director, Research and Education; Andrea Censky, associate legislative director; and Francis Byrne, legislative director, Eastern Paralyzed Veterans Association, represented PVA at the annual board meeting of National Coucil of Spinal Cord Injury (NCSCI). The organisation is a coalition of groups and individuals involved in various issues of spinal-cord injury. NCSCI's current president is Arthur Ullian.

In 1994, NCSCI will direct its efforts toward increasing the funds available for spinal-cord-injury (SCI) research, especially at the federal level. In this deficit-reduction period, the goal is challenging, yet must be met for substabntial progress to occur. Major research breakthroughs have led to the belief that effective treatments for many central nervous system (CNS) disorders can be found within the decade. There is enormous momentum in neurological research at this time, but it will be lost if the low level of research funding continues.

NCSCI will focus on:

Increasing SCI-research finding at the National Institutes of Health (NIH). NIH is the largest single funding source for SCI research. Last year, however, funds for high-profile disease such as AIDS and breast cancer were increased at the expense of neurological research. We must ensure that this "robbing Peter to pay Paul" policy does not continue and that neurological research is increased. Including SCI-research funding in the National Health Security Act. The lack of research finding in the health-reform plan has been an oversight that must be corrected. Research provides the best way to cap the spiraling costs of neurological disorders. A cure is the most effective cost control--but cures will never be found if reasearch isn't vigorously funded.

Increasing SCI-research funding at the Department of Veteran Affairs (VA) and the Department of Defense (DOD). VA and DOD are important sources of funding for SCI research; these programs must be maintained at strong levels.

Encouraging more private-sector SCI research. Pharmaceutical and biotech industries conduct a large amount of research that is vital to the development of effective new treatment for SCI. This research should not be discourages and diminished by government regulations.

At the NCSCI meeting, various issues and strategies related to meeting these goals were discussed. Speakers included Patricia Grady, acting director of the National Institute of Neurological Disorders and Strokel Philip Johnston, regional director, Department of Health and Human Services; Jessica Riviere, health and legislative aide to Senator Edward Kennedy (D-Mass.); and Wise Young, professor of neurology, New York University Medical Center.

Because research findings related to one neurological disorder are often relevant to another (e.g., aspects of SCI and traumatic brain injury or multiple sclerosis), the NCSCI leadership is attempting to establish an alliance with neurological-disease advocacy groups to present a stronger, united front. The first meeting of this group, End Neurological Disorders (END), met in Washington, D.C., on February 7. Participating organizations represented a wide variety of neurological disorders: SCI, head injury, multiple sclerosisi, cerebral palsy, Tay Sachs, neurofibromatosis, Parkinson's disease, epilepsy, and brain injury.
COPYRIGHT 1994 Paralyzed Veterans of America
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1994 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Title Annotation:National Council of Spinal Cord Injury
Author:Johnston, Laurance S.
Publication:PN - Paraplegia News
Date:Apr 1, 1994
Previous Article:Buttonhole laser surgery.
Next Article:Sexuality and women with SCI.

Terms of use | Privacy policy | Copyright © 2020 Farlex, Inc. | Feedback | For webmasters