Disability Rights Nation

Sept. 26-
Oct. 10
From Ragged Edge's
D. R. Nation department Sept./Oct., 1998

Stopping Jack: another try

Don't use this report to fight Jack

Peter Singer appointment draws warning

Biochemist has no problem with thalidomide


Research Money Spent on Walking
Doesn't Sit Well

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

A report out in July from the New England Journal of Medicine says that, contrary to popular belief, "physician-assisted suicide would save only a tiny percentage of health care dollars."

Good news? NOT! says Not Dead Yet. "It doesn't mean disabled people," says NDY.

Dr. Ezekiel J. Emanuel of Harvard Medical School and the Dana Farber Cancer Institute and Margaret P. Battin of the University of Utah School of Medicine analyzed potential cost savings of "allowing terminally ill patients to ask their doctors for help ending their lives" using data from the Netherlands, where euthanasia's practiced.

Their analysis shows that "the savings can be predicted to be very small--less than 0.1 percent of both total health care spending." Cost savings estimates have been inflated, they say, because people over-estimate how much money is spent on medical care at the end of life. BUT, says NDY, the study's not relevant to disabled people, who will continue to be seen as costing great amounts of money to keep alive.

Although the study could not find a cost savings in killing off "terminally ill" people, Battin and Emanuel reported that, as news reports put it "individual patients and their families may be spared crushing out-of-pocket expenses" (emphasis ours) "if physician- assisted suicide is legalized, especially in cases where the patient does not have health insurance."

NDYer Carol Gill says, "Peggy Battin is a strong proponent of the right to die and has heard the best disability-related arguments opposing it without being moved. She and her buds like to discount the disability community opposition, and they have often used data and arguments irrelevant to our experience."

NDY argues that society "will find it cheaper to discard us than to support our lives with quality.

"Don't let anyone get away with telling an audience that this research counters that argument," she said.

"The motive behind" the study, says another NDYer, was to show cost savings to be much greater than in fact they turned out to be.


Peter Singer appointment draws warning

Members of Not Dead Yet warn that bioethicist Peter Singer, appointed this summer to the Ira W. DeCamp Professorship of Bioethics at Princeton University's Center for Human Values, is "much more dangerous than Kevorkian"--mainly because the public is unaware of his disability views, knowing him only as an animal rights activist.

Suppose a woman planning to have two children has one normal child, then gives birth to a haemophiliac child. The burden of caring for that child may make it impossible for her to cope with a third child; but if the disabled child were to die, she would have another. . . . When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the haemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.

--From the textbook Practical Ethics, by Peter Singer

Biochemist has no problem with thalidomide

Dr Gregor Wolbring says he doesn't think there's anything wrong with the FDA okaying thalidomide again. The drug was given approval in July by the FDA.

Wolbring, a biochemist with the University of Calgary and an active participant in Not Dead Yet, calls himself a "thalidomider."

"I never viewed myself as a tragedy simply because I was born without legs," he said. "I think I am just fine without them. If I couldn't accept myself for who I am and what I am, I wouldn't be able to function and demand my human rights."

Wolbring sees nothing wrong with thalidomiders being born, he told Ragged Edge.

But there would be something wrong "if society demanded that women abort a fetus if tests show it will be a thalidomide baby," he said.

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