Spring 2005
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sci summit 2005 breakout topics
Research By Maria Amador
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esearch on multiple fronts is currently underway to address both “care” and “cure” of persons with SCI. Increasing numbers of laboratories located worldwide now pursue what 20 years ago was considered unthinkable — the repair of neural tracts and full restoration of body functions in those with paralysis. SCI regeneration research is on a systematic advance toward clinical trials for testing repair of spinal cord functions. New treatment approaches are needed to rescue neurons and prevent axonal damage, replace dysfunctional neurons and promote axon regeneration, and guide the regrowth and remyelination of axons. Rehabilitation strategies will also be needed to promote recovery of function. Only a comprehensive approach — drawing on expertise in the fields of cell biology, electrophysiology, pharmacology, molecular biology, transplantation, surgical interventions, regeneration, and rehabilitation — will comprise an effective recovery strategy. Several reparative approaches with potential for translation to clinical trials are emerging. These include: neuroprotective strate-
Technology By Jane Berliss-Vincent
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hile medical technology focuses on direct modification of the body, adaptive technology (also known as assistive technology or AT) is any product — high, low, or no tech — that helps with modification or negotiation of the environment for a person with a disability. Prosthetic hands, for example, are a medical technology, while spoons with easy-to-grip handles are AT. Although this distinction is not always precise, the implications can be significant. Funding from sources such as Medicare may be available for "medically necessary" technology, but not for AT. A consumer may be more interested in products that improve environmental shortcomings over modifications that extend their physical capabilities. AT that was initially developed to meet the needs of people with SCI or other disabilities sometimes find an audience with the broader public. Reachers with gripping ends are increasingly being marketed to nondisabled individuals, for example. There is now a large body of AT that can be acquired at mainstream retail stores — some WalMarts even have an AT section. Mainstream products can also serve AT purposes, either out of the box or with modifications. One example is Roomba, a small robot whose sole function is vacuuming floors. Roomba is available for under $200, or about the price of a traditional vacuum cleaner, and is being marketed to a variety of consumers — including, without fanfare, wheelchair users.
gies to curtail the cascading damage to the spinal cord that occurs following injury; auto-transplantation methods using adult human cells (Schwann cells, olfactory ensheathing glia, and oligodendrocytes); embryonic, fetal, and adult (stem) cells and tissues for transplantation; and molecular and pharmacological approaches to counteract the inhibitory spinal cord environment and to guide axon growth and synapse formation. The challenge will be to translate these emerging treatment strategies into practical use through welldesigned and systematic clinical trials. New rehabilitation-based techniques are being designed and tested to follow up on preserved or repaired spinal circuitry, and to improve muscle strength and function. While these are not curative, therapies such as body weight support gait training, electrical stimulation assisted-walking, and exercise programs have been shown to improve muscle strength, cardiovascular health, and in some cases their ability to move. Recent research suggests that intense activity-based therapies may help re-establish partial movement in some people with SCI. Meanwhile, other important research addresses quality of life issues such as pain, spasticity, aging, sexual function, fertility, and bowel and bladder function. From the broad scope of ongoing research, promising new treatments may
emerge but their implementation can often be a challenge. Treatments are costly, and clinicians with specialty training are in limited supply. Examples of therapies that have been developed and researched but that have not experienced widespread use are FES (functional electrical stimulation), lower extremity cycle ergometry, FES assisted walking, hand neuroprotheses, and bladder stimulation devices. Whether insurance agencies will approve reimbursement for such care to a narrow segment of persons with SCI and whether biotechnology companies can survive economically with such small constituencies of users remains to be seen. In the attempt to bring therapies to clinical trial, researchers consider what treatment strategies should be taken to clinical trial, how the protocols should be designed, when clinical trials should commence, and who would be included in the first trials for chronic injury. Researchers also must consider the potential risks in deciding who is to be included in a specific protocol. Who has the most to gain from a treatment or the least to lose? To their credit, scientists have now opened pathways of communication to formally address these issues. In February of 2004 The International Campaign for Cures of spinal cord injury Paralysis (ICCP) supported and funded the first international clinical trials workshop on SCI in Vancouver, British Columbia where a work-
This trend should help counter the stigma of AT as a body of specialized products designed only for people with disabilities, ideally resulting in greater product availability and reduced prices for consumers. It is less clear that product quality will automatically improve. In 1993, when voice recognition technology for computer input was still primitive, one researcher wrote that users with disabilities "have been shown to tolerate poor recognizer performance as it may provide their only means of completing a task independently." User satisfaction standards for AT should be no different than for other products. Commitment to performance quality will naturally result in better AT — and increase the likelihood that, where appropriate, products will be adopted by mainstream users. Consumers with SCI must insist that AT products meet their standards of satisfaction. The stereotype of AT is that it tends to be complex, expensive, and highly specialized. For example, media reports on AT for people with SCI often highlight eyegaze systems, which allow a user to move a cursor on a computer screen via their eye movement. In truth, this technology is relevant to only a small minority of people with SCI who have substantial upper extremity impairment. Without question, specialized or highend AT products should be readily available for individuals whose capabilities are best served by them. However, there is also an ongoing need to find and disseminate information about creative functions for existing lower-end technologies. Of course, AT quality is irrelevant if the products are unable to reach consumers. A variety of potential bottlenecks are in the way: • Product developers who estimate a small
market share are naturally reluctant to create products or follow through on prototypes. End users can help by demonstrating the benefits of AT features to mainstream users to help generate more demand. • Federal funding for the Assistive Technology Act that was reauthorized in 2004 has been eliminated in the 2006 budget. This Act funds centers that provide objective information about AT. At the same time, information distributed by the government's "Buy Accessible" database contains highly subjective statements written by product and service vendors. This "information gap" needs to be filled in. • While there are a variety of initiatives aimed at making AT available to children, this is far less true for adults and seniors. Advocates need to direct their energies to promoting and expanding the reach of the federal Alternative Funding Program, Departments of Rehabilitation, and insurance providers. The successful development and distribution of AT is a win-win-win situation. A range of vendors who are committed to developing quality AT are seeing sufficient sales volume to thrive. Funding sources are able to demonstrate that they are providing the right resources to the right individuals. Most importantly, AT users are significantly aided in their ability to work, study, play, and live independently. Jane Berliss-Vincent is the Director of Adult/Senior Services at the Center for Accessible Technology in Berkeley, CA. www.cforat.org.
ing panel was established to develop guidelines for SCI clinical trials. Since the early 1980s there has been growing interest by seasoned and young investigators alike to uncover the mysteries of healing in the spinal cord. The National Institute of Neurological Disorders and Stroke (NINDS), The Miami Project to Cure Paralysis, the Christopher Reeve Paralysis Foundation (CRPF), and others have invested in the training of young scientists and now thousands of researchers worldwide have dedicated their careers to SCI research. While spinal cord repair remains an extraordinary challenge, a worldwide community believes that successful treatment strategies can be found. While the ultimate goal of finding a cure has yet to be met, these high caliber efforts deserve accolades and continued attention and support from scientists, governmental entities, consumer-based organizations, and individuals directly impacted by SCI. Maria Amador, BSN, CRRN is the Director of Education for The Miami Project to Cure Paralysis at the University of Miami Miller School of Medicine. Her office provides information about the Miami Project’s mission and research programs to individuals with SCI, their families, healthcare professionals, and scientific visitors.
THE NSCIA RESOURCE CENTER We provide customized, personalized telephone support for any question you have regarding spinal cord injury. Our staff — which includes an SCI registered nurse — draws from a wide range of information resources, and is able to serve Spanish-speaking callers. We will gladly provide written materials to those without Internet access.
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