Steven,
Let me try to answer your question as best as I can. Spinal cord injury
research aims at several major therapeutic targets: neuroprotection,
remyelination, regeneration, and cell replacement. All of these targets
are highly relevant to diseases such as Alzheimers, amyotrophic lateral
sclerosis, transverse myelitis, multiple sclerosis, traumatic brain injury,
stroke, Parkinson's disease, and nearly 400 other neurological diseases.
Let me give you some concrete examples of where spinal cord injury research
advances have already contributed to therapies for other neurological
diseases. High dose methylprednisolone was the first neuroprotective
therapy that was effective when given after injury. After it was shown to
be effective for spinal cord injury, high dose methylprednisolone has been
adopted for multiple sclerosis, facial nerve palsy (Bell's palsy),
transverse myelitis, and many acute neurological conditions where secondary
injury might occur. Cell transplants was first attempted in spinal cord
injury and has spread to other fields including stroke and Parkinson's
disease. The notion that there are growth inhibitors in the white matter
was first demonstrated in spinal cord injury and of course has become the
dominant theory of regeneration in neuroscience today. The first
demonstration of functional regeneration in the central nervous system was
achieved in spinal cord.
A two-way street connects brain and spinal cord research. Many findings in
brain research have helped spinal cord injury research. For example, the
concept of programmed cell death or apoptosis first came about from
developmental neuroscience. Scientists discovered that cells possess a
complex set of suicide genes that can be activated by a variety of signals.
Apoptosis was recently discovered in injured spinal cords and we are using
the tools developed from development neuroscience and brain research to
assess apoptosis in the spinal cord. Likewise, the concept of
neurotoxicity mediated by excitotoxic neurotransmitters had its origins in
stroke research and a major new class of neuroprotective agents in spinal
cord injury comes from this concept. Finally, there is much progress
recently establishing the inflammatory signals or cytokines that can
stimulate neuronal growth in the central nervous system. I believe that
some of these signals will be crucial for "kickstarting" growth in chronic
spinal cord injury.
At the present, the National Institutes of Health devotes about $700
million per year to the National Institute of Neurological Disorders and
Stroke (NINDS), or about 6% of a total budget of about $13 billion per
year. This is an amazing small commitment, considering that over 50% of
the most costly disabilities stem from neurological disorders and account
for a majority the medical care costs of this country. Given the
importance of our central nervous system, the economic significance of
neurological disabilities, the greater public awareness of spinal cord
injury and other neurological problems, and the acknowledged paucity of
effective restorative therapies for neurological disorders, one would have
imagined that the government would devote much more funding to neurological
research. Not only is the government not investing adequately but private
sector donations are pitifully sparse considering the magnitude of the
problem. To date, for example, spinal cord injury research has not
received multi-million dollar bequests that are routinely given to cancer
or AIDS research. Why are people investing so little?
In my opinion, the following three factors have contributed to the failure
of the nation to invest adequately in therapy-oriented neurological
research.
1. The community does not speak with a single voice. People with
Parkinson's disease, stroke, traumatic brain injury, Alzheimer's disease,
spinal cord injury, multiple sclerosis, muscular dystrophy, etc. not only
speak separately but often compete fiercely with each other for funds.
Congress sees neurological disorders not as a single entity but as a
collection of disparate and small constituencies that are seeking attention
for the "disease of the week". We have divided ourselves and have allowed
others to take advantage of our weakness.
2. There is a dearth of hope in the field. For a long time, scientists
and clinicians have said to policy-makers in the White House and Congress
that we are unlikely to develop regenerative and restorative therapies
within our lifetime. The disability community has contributed to this
sense of fatalism by often denying the possibility of therapies that can
restore function. Many members of Congress believe that increasing funding
for neurological disorders would be throwing valuable money into a deep and
dark hole. The lack of hope has been devastating, not only for people but
for research funding.
3. The fundraising and lobbying effort has not appealed successfully to
the general population. For example, the community's disinterest in and
sometimes frank opposition to prevention research has restricted its appeal
to the general populace for political and financial support. Both cancer
and AIDS fundraising emphasize prevention; the American Cancer Society
spends much of its budget on cancer prevention. These organizations
receive much political and financial support from non-afflicted people,
something that the neurological disorders and spinal cord injury community
has not yet achieved.
In order to achieve the level of funding that is necessary to develop and
move neurological therapies rapidly from laboratory to clinic, the
disparate communities that suffer from neurological disorders must work
together, support each other, and focus on enlarging the whole pie rather
than squabble over pieces of a small pie. The community must bring the
message of hope to the American public and political leaders, emphasize
that it is not a matter of "if" but "when" effective therapies become
available. Finally, we must become more altruistic in our appeal to the
American public and our political lobbying. We should not be emphasizing
solely cure for those who are injured but prevention of injury for others
and cure for future generations. Do any of us really want our children to
live in a world that is as bereft of hope?
Wise.