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.
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