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Laurance Johnston, Ph.D.

Sponsor: Institute of Spinal Cord Injury, Iceland 



This resource and the project behind it are based on the whole-is-greater-than-the-sum of-the-parts premise that better integration of the divergent pieces of the puzzle that exist throughout the World will catalyze the development of function-restoring therapies for SCI. There are many factors we must consider to accelerate this integration, including for example, the following:

1) Need for Multidisciplinary Solutions: Even our most pre-eminent SCI scientists often know little beyond their speciality area. Nevertheless, the quantum-leap breakthroughs require such knowledge; they are the product of synergistically integrating insights from different disciplines.

The author once organized a major multidisciplinary SCI conference, which culminated in an extravagant black-tie gala that featured many celebrities such as Christopher Reeve. Because of the gala, scientists stuck around to the conference’s very end, exposing themselves to subjects outside of their usual focus. Although every talk concerned SCI, it was amazing to observe, for example, how clinicians knew little about potentially revolutionizing neuroscience developments, and the basic-science researchers – often having never actually met anyone with SCI - were oblivious to problems and priorities of people with SCI. Because our can’t-see-the-forest-because-of-the-trees awareness greatly impedes the development of new SCI therapies, we need more mechanisms that foster multidisciplinary perspectives.

2) Need for International Collaborations: We need to foster more bridge-building, international collaborations. For example, in efforts to evaluate promising SCI therapies, the author has searched the World, including checking-out several innovative function-restoring approaches in China and Russia. Both programs were built upon a solid foundation of scientific research, extensively discussed in Chinese or Russian professional journals, and approved by institutional human-subject boards. Yet because the scientific world emphasizes English, relatively few “establishment” scientists had a good appreciation for them, and, with a belief in the superiority of their own research vision, tended to be dismissive.

In another example, recognizing that China has the most cases of SCI in the world, leading scientist Dr. Wise Young is creating a collaborative network with Chinese researchers and centers to carry out clinical trials that would be difficult to do elsewhere.

In a final example, a prestigious blue-ribbon committee of the US National Academy of Sciences Institute of Medicine recently developed a major report entitled Spinal Cord Injury: Progress, Promise, and Priorities. In spite of its length, the committee ignored a great deal of the promising therapies being developed elsewhere in the world and how much of a global community we have become.

3) Need to Integrate Contributions of Small Clinics/Institutions: Throughout history, many of our most important medical breakthroughs came out of not prestigious universities but relatively small clinics or institutions. Although there are many reasons for this, creativity is often better expressed in an environment free from the shackles of dominating thought that prevail at large research settings or the organizations that fund them. 

Many small clinics produce impressive anecdotal results. Because the results have not been generated by rigorously designed and expensive clinical trials and published in peer-reviewed journals, they are often dismissed by the biomedical establishment, which conveniently ignores while doing so that only 10-20% of routinely used medical practices have been scientifically proven. The famous astronomer Carl Sagen once stated “absence of evidence is not evidence of absence.”

Because small clinics focus on maximizing functional improvement, they often combine a primary treatment with supplemental therapies, such as aggressive physical rehabilitation. Because such rehabilitation by itself has the potential to restore some function, it is a confounding factor for scientists, who desire to assess the individual contributions of multi-component interventions. Hence, the patient’s number one priority of regaining the most function runs counter to the researcher’s desire for scientific purity.

Ideally, we need mechanisms which foster the critical evaluation of therapies developed by small, independent clinics through the establishment of relationships with research-focused institutions.

4) Need to Recognize Role of Traditional/Indigenous Therapies: Because most of the World cannot afford Western high-tech medicine, indigenous and traditional healing practices still collectively play an important global health-care role - so much so that the WHO has recommended that they are integrated into national health-care policies and programs. Although impoverished populations have the greatest SCI incidence, they have the least access to the health-care resources that many of us take for granted. If we are going to be good global citizens concerned with the entire World and not just affluent populations, we must consider these economic-health-care disparities and, in turn, indigenous/traditional healing disciplines when developing policies for treating SCI.

Ancient wisdom often has much contemporary validity. For example, scientists have shown that acupuncture influences neuronal stem-cell expression in several animal models of neurological disorders. Because of such suggestive studies, as well as other studies indicating that acupuncture can restore some function in both acute and chronic human SCI, acupuncture has been incorporated into a number of SCI stem-cell programs. If one of the world’s most ancient healing tradition, acupuncture, can influence the most state-of-the-art therapy (i.e., stem cells), we should pay attention, or the promising therapeutic potential of this emerging technology may be compromised.

5) Need to Recognize Economic Factors: In addition to humanitarian reasons for creating programs to accelerate the development of new SCI therapies, there are compelling economic reasons. Unlike many neurological disorders that strike the elderly, SCI generally afflicts young adults whose societal contributions have just begun.  In addition to life-altering physiological changes caused by paralysis, these individuals, who have a near-normal life expectancy (at least in affluent countries), face immense lifetime SCI-associated expenses that must be shouldered either by the individual or society. As summarized in Spinal Cord Injury: An Analysis of Medical and Social Costs, the lifetime direct and indirect costs are many millions of dollars. Hence, the upfront funding of programs that accelerate the development of new SCI therapies has the potential to save society extraordinary future expenditures.

6) Need to Push Patients’ Perspectives to the Forefront:  The German philosopher Arthur Schopenhauer stated: “Every man takes the limits of his own vision for the limits of the world.”  The truth of this statement is especially evident in the difference in outlook of people with SCI and scientists. The former are demanding real-world solutions to SCI’s devastating sequelae now, while the latter believe the best way to develop such solutions is an allegiance to what the former consider a glacially moving scientific process. Through searching the Internet, people with SCI and their family members increasingly get glimpses of what is possible and don’t want to wait until science’s liaise-faire approach produces a “thumbs-up” approval at some distant point in the future.

If Gudjonsdottir had waited for such approval, her daughter would have never accrued the significant functional improvement that she has obtained. As emphasized by President Finnbogadottir’s 2001 talk, it is a human-rights issue, one of empowerment that allows people with SCI to have access to information for their own health-care decision making, the goal of this resource. As implied by President Finnbogadottir, the project’s primary allegiance should be to people with SCI. Although science is paramount in developing new therapies, its approaches are not sacrosanct, often subjective, and should be subordinate to the needs of the people - not the other way around.