July 25, 2002
By Matt Pueschel
As the U.S. steps up its fight against terrorism, some health care advocates are concerned that important disease research may be relegated to the backburner.
Citing the existence of 54 million disabled Americans and 100 million suffering from diseases that were once thought to be incurable, actor and spinal cord injury research activist Christopher Reeve spoke of the need for science to continue to progress in the search for treatments and cures. "We're afraid that there will be a loss of focus due to the crisis going on in the world right now," Reeve said at a symposium here last month that marked the 50-year anniversary of brain research at the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institute of Mental Health (NIMH). "The most productive work in science comes in the time of crisis and you think of the AIDS crisis. It was not until it became a crisis that it received the kind of funding it enjoys now. So, a disease that was once considered a death sentence and received nothing in 1984, now receives $1.8 billion from NIH."
Reeve said the whole specter of AIDS was reduced from something comparable to the Plague to something that many people can now live with productively. "I think it's very difficult for many of us, people with ALS [amyotrophic lateral sclerosis], MS, spinal cord injuries and stroke, who have never heard the word crisis applied to any of those," he advised. "We know there is important work going on, but I think what we're scared of most is that basic research will go [on] too long. It must not be anything more than the basis for therapy. If basic research becomes an end in of itself, that will create a big despair."
Reeve said President Bush's decision over the summer to allow a limited number of embryonic stem cell lines to be used for federally-funded research was "very difficult" for many SCI patients to hear because while it appeared to be promising on one hand, it raised a lot of questions about the number, location and viability of the lines that were made available, as well as questions about their safety given that many were cultured using mouse feeder layers. Reeve questioned whether the decision will lead to tools that are useful in therapy or whether it just let the President off the hook for the moment.
The lines may only provide scientists with material for five years of research that might not end up in therapeutics.
"For me it's been six-and-a-half years [since the accident that left him paralyzed]," Reeve said. "That's not very long for [some others with SCI]."
But Reeve said he made a "covenant" with researchers a while back that the race for a therapy or cure is a 50-50 deal between scientists and patients. Likening it to the construction of the transcontinental railroad that was begun simultaneously from each coast and finished in the middle, Reeve said, "the patient's job is fighting the sedentary lifestyle, from skin breakdown to [muscle] atrophy, cardiovascular problems and osteoporosis. That means electrical stimulation, using electrodes to ride a bike three times a week, aquatherapy, step training on a treadmill. It means all these things, which is luckily available for me. So, I'm blindly going ahead with the expectation that the science community is going ahead [as well]."
Reeve said his battle includes fighting his insurance company to cover aquatherapy, which helps promote chronic recovery in SCI patients. "We hope that will encourage HMOs, insurance companies and medicare to cover this, so patients can go to work," he said. "We don't want to be a drain on the system. We want to be productive."
Reeve, chairman of the Christopher Reeve Paralysis Foundation (CRPF), said his group uses 30-40 per cent of its income to help patients keep up "their half of the deal" through funding of quality of life grants. "I'm just afraid it will be of to no avail if we lose the focus of actually curing people," he said. "It's called the National Institutes of Health, not the National Institutes of Research. Health means recovery, to the best of all our collective ability."
Citing the time when Franklin D. Roosevelt established NIH in 1940 and
challenged scientists to cure polio, Reeve said similar challenges remain
today as the fight against terrorism wages on. "Even though now we're relegated
to the back pages, don't forget that this return to normalcy doesn't mean
the same thing [to me] as it does to you," he said. "My normal is not ultimately
acceptable. By us working together with the private sector, thinking in
terms of solving a crisis, then I think we will accomplish it and we'll
really have something to look forward to. So, I'll meet you in the middle."
New Paralysis Center To Open
The Centers for Disease Control and Prevention announced last month that it will provide $2 million to help create a new central resource for people living with paralysis, their families and caregivers. The new Christopher and Dana Reeve Paralysis Resource Center (PRC) will be the most comprehensive and accessible resource available to people living with paralysis and will be dedicated to improving their quality of life.
The facility, which will be located in Short Hills, N.J., will open next spring and provide a staff of specialists who will coordinate a comprehensive library, website, educational materials, referral services and self-help information.
To help launch the new center, a national online survey is being conducted on the CRPF website, www.paralysis.org, to gather opinions and recommendations from people and professionals in the paralysis community on ways the center could meet their needs.
"One of the most disabling aspects of paralysis is the lack of resources and support necessary to get back into a world that has completely changed for the paralyzed individual, both economically and socially," Reeve said. "When somebody is first injured or as a disease progresses into paralysis, people don't know where to turn. We will provide that support and information to people."
Department of Health and Human Services secretary Tommy Thompson presented Reeve with the grant for the new center last month.
Colleen Dermody, a spokesperson for CRPF, said the center will be different from the foundation. The foundation was founded in 1997 and has been primarily focused on disbursing grants to researchers to study spinal cord injury and disease, and on projects that work to improve the quality of life of patients with these afflictions.
Dermody said the information gathered from the survey will be used to
develop the aims of the PRC when it opens next year.
NIH Symposium Marks Anniversary
Reeve was the featured speaker at a NIH symposium last month that marked the 50th anniversary of the creation of NINDS and NIMH.
In an introductory letter to the symposium, W. Maxwell Cowan, MD, PhD, senior scientist consultant at The Dana Alliance for Brain Initiatives in North Bethesda, Md., and chairman of the 50th anniversary symposium executive committee, wrote that the founding of the two NIH institutes coincided with the emergence of the new discipline of neuroscience. The support provided by the two institutes since has led to increased progress in both fundamental neuroscience and in the application of discoveries made to the care and treatment of patients over the last half century. "So rapidly is new knowledge being gained that it was recently estimated that the number of new discoveries about the nervous system doubles roughly every ten years," Dr. Cowan wrote. "But while much has been gained, far more remains to be achieved."
For instance, one speaker raised the point that NIMH received only 5.6 per cent of the NIH budget in 1993 and receives only 5.5 per cent today.
"We are still far from understanding at a deep level how the billion or so nerve cells that comprise our brains enable us to perceive the world around us, to interact constructively with others, to learn and remember, to read and speak, to think and feel," Dr. Cowan wrote. "And while considerable strides have been made in our ability to diagnose and treat many nervous system disorders-from strokes and epilepsy to schizophrenia and manic depression-there are many more about which our understanding is still painfully limited.
"We have not yet been able to prevent Alzheimer's disease, which threatens so many of our older citizens; we cannot heal the injured spinal cord or slow the progression of ALS and multiple sclerosis. We have yet to discover the underlying genetic basis of the major psychiatric disorders. And we still do not know how to prevent drug addiction and violence. These and other nervous system disorders, too numerous to mention, remain among the greatest challenges facing biomedical science in the 21st century."
Among the other speakers at the symposium was Kay Redfield Jamison, PhD, a psychiatry professor at The Johns Hopkins University School of Medicine in Baltimore who has authored dozens of articles about mood disorders, suicide, psychotherapy and lithium and written a best-selling memoir of her own experiences with manic-depressive illness.
Dr. Jamison spoke about how many people with mental illness, especially lawyers and other professionals, are reluctant to talk about their conditions or get help for fear of personal or professional reprisals. In her case, she had the unequivocal support of her family and the Hopkins staff and decided to publish her experiences. She said manic depression had brought her psychiatric manias, suicidal depressions and a "storm of moods" and thoughts since age 16. "But I managed to keep it hidden," she said. "Once I told them, I knew it would change their perceptions. Their response was quite human. Two patients [of hers] expressed hope that the medical community would become more aware of mental illness and they would become more tolerant."
Dr. Jamison said talking about her illness had a freeing effect. "For every fear, there is the freedom of honesty," she said. "We have begun talking about an illness that has been rampant in my family and we talk about it in casual conversation."
Dr. Jamison said writing her memoirs made her more philosophical and better armed to deal with her condition. She said she moves more easily now as her moods and the seasons fluctuate. "My high moods will plummet into a black and gray and tired heap. These moods will pass and the electrifying carnival will come back," she said. "The colors are less strange now and the blacks and grays less dark. With time one is increasingly less terrified. The book was about love, too. It recreates hope and restores life. It made the sadness bearable and the highs manifest."
Although the condition is tempered by medication, she also said that one feels weary of exerting too much control because the world constantly changes, too.
Another discussion during the symposium revolved around drug safety and effectiveness, and the art of trying to make a drug. One speaker, Dr. Timothy A. Pedley, spoke of how the safety aspect is usually better the more specific the action of a drug is. He said scientists have to subdivide diseases by molecular mechanisms when conducting clinical trials. "You have to dissect out the molecular mechanisms and have knowledge of their clinical impacts. You need an interface," he said. "I don't see how you get farther unless you take the puzzles apart and talk to the clinicians."
The Henry and Lucy Moses Professor and Chairman of the Department of
Neurology at Columbia University, Dr. Pedley established in 1989 the Comprehensive
Epilepsy Center at Columbia-Presbyterian Medical Center that has proven
instrumental in shedding new light on epilepsy, from its molecular level
to its social impact.
© 2002, U.S. Medicine, Inc.