by Mike Ervin
"They're playing politics with our research money."
Washington, DC attorney Laura Cooper is chair of the advisory board to the
National Center for Medical Rehabilitation Research (NCMRR), an important but
obscure federal agency serving people with disabilities. Cooper charged that a
recent decision by NCMRR administrators to fund a major initiative into spinal
cord injury research was politically motivated.
"When President Clinton tells Christopher Reeve he's going to spend more
money on spinal cord research, this is what he means," she says.
"It's not new money."
Part of the National Institutes of Health, NCMRR's purpose is to "foster
development of scientific knowledge needed to enhance the health,
productivity, independence and quality of life of persons with
disabilities." NCMRR accomplishes this goal by "supporting research
on enhancing the functioning of people with disabilities in daily
life."
NCMRR grants support medical research on the physiology of disability as well
as a broad spectrum of activities such as developing improved assistive
technology. The 1990 legislation that created the Center also mandates
consultation with an advisory board that consists of 12 medical professionals
in the fields of rehabilitation research and six members representing persons
with disabilities.
What has Cooper and others on the advisory group upset is a shift in
priorities away from the eclectic cross-disability mission of NCMRR that will,
she contends, necessarily be done at the expense of supporting projects in
other areas of disability.
They're upset over the NCMRR request for applications (RFA) for the "body
weight supported ambulation training after spinal cord injury (SCI)
project," a five-year field study that is estimated to cost as much as
$800,000 each year.
Dr. Marcus Fuhrer, director of NCMRR, explains the procedure in non-scientific
terms: it's supporting a spinal-cord injured person in a standing
position--usually by using a harness under the individual's arms. The person
is held high enough for their feet to be just above the ground. Then a
therapist simply moves the individual's legs back and forth in a walking
motion over a period of time.
Fuhrer says European research has shown that some people who underwent this
therapy regained some ability to take steps. What might be happening, Fuhrer
says, is that the brain picks up some "walking related rhythms that may
be activated later."
Steve Tuel, NCMRR clinical practices program director, cautions that the type
of walking that has happened so far has not resulted in anyone flinging their
wheelchair into a dumpster. "It's certainly not jumping out of bed and
running after the bus. But the ability to take a few steps can have positive
functional consequences."
Those with incomplete injuries have shown the most recovery, Tuel says, while
those with complete injuries have shown little improvement. And questions
still remain, Fuhrer says. Could the results be a fluke? Might the subjects
have regained function anyway? If the results are genuine, how far-reaching
might they be?
It's time to take the research to the next step, Fuhrer says. It's time to do
an extensive field study to measure the results using human subjects over a
prolonged period of time under scientifically-controlled conditions.
Last fiscal year, NCMRR spent approximately $5.5 million of its $27 million
in expenditures on funding new projects. Assuming spending levels are similar
next year, $800,000 is about 16 percent of new project money. "They might
as well call it the National Center for Spinal Cord Injury Research,"
Cooper says.
Mainstream Magazine publisher Cyndi Jones, who recently ended her term on the
advisory council agrees with Cooper that the project puts disproportionate
emphasis on SCI. "There's so many issues. I'm not saying don't do spinal
cord research. But there are a lot of other things." Cooper also says she
feels railroaded. "This is wired money," she says.
"They predetermined that it was going to be just SCI." Cooper says
the first time the advisory board learned that this project had been selected
was when the RFAs were released. Jones says, "It's frustrating because
when you're a consumer on the board you're really just a token."
Fuhrer says the board agreed long ago that it was time for NCMRR to fund its
first full-scale field study. A subcommittee developed criteria for the kind
of subject that would be most appropriate to study, he says, but there was
never any illusion that the board would have input beyond that point. "We
told them after all this that we would choose [the subject]. This is, after
all, an advisory board."
Fuhrer adds, "I think there is a portion of our board that would agree
with our decision. I don't know that it is a majority."
Disagreement on the board reflects longstanding tensions between disabled
activists and medical professionals. Board member Rebecca Craik, associate
professor of physical therapy at Beaver College in Glenside, Pennsylvania,
says she too was skeptical at first, but after attending a meeting where NCMRR
staff explained their logic she now thinks the choice is "well
justified."
Board member Dr. Michael Alexander who is chief of rehabilitation at the
Alfred I. Dupont Institute in Wilmington, Delaware, disagrees that the
selection has a narrow scope. "It could have implications well beyond
spinal cord injured people."
For that same reason, another doctor, Nicholas LaRocca, director of research
for the National Multiple Sclerosis Society, thinks Fuhrer and his staff made
a bad choice. LaRocca, a clinical psychologist, is not a board member but he
was at the meeting where the rationale was discussed. "My reaction was
one of disappointment, to say the least."
LaRocca and Cooper agree that the human subjects for the study could at least
include people with multiple sclerosis or other disabilities besides SCI. But
Fuhrer says one of the main criteria set forth by the advisory board was that
there must be enough successful research to suggest that the study would have
a good chance for success. Since promising research has involved people with
SCI, Fuhrer says including other disabilities would reduce the chances for
success.
But LaRocca points out that even if the results are resoundingly positive, the
practical applications may be minimal.
Because insurers are quick to discount anything that isn't directly backed up
by clear research, LaRocca says, any treatments that may result from this
research probably will not be covered by health insurance for people who don't
have SCI. "You run the risk of producing a result so narrow the benefits
will be limited," he says.
© Copyright 1998 The Disability News Service, Inc.
Stopping Jack: another try
On Sept. 1 Michigan's latest attempt to stop Jack Kevorkian took
effect--a law banning assisted suicide. Michigan Governor John Engler said the
law would "give prosecutors the tools they need" and "put out
of business those who prey on the vulnerable." Kevorkian's never been
convicted for the more than 100 assisted suicides he's attended since 1990.
But the law could be voided in November by a referendum on the ballot asking
Michigan voters whether to legalize physician-assisted suicide "under
controlled circumstances."
Don't use this report to fight Jack
Study is not the good news it seems,
says NDY
