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Pitt doctor lends voice, research to the fight
Sunday, December 10, 2000 By Gary Rotstein, Post-Gazette Staff , Writer
During one week in July, as hundreds of the world's top Alzheimer's researchers convened in Washington, D.C., to pore over the latest findings in the fast-breaking field, a mild-mannered Pittsburgh neurologist was as visible as any of them. v Dr. Steven DeKosky, whose broad shoulders and reassuring tones would match those of most airline pilots, turned up within days in interviews on NBC, CBS, CNN, PBS and NPR to translate the trends from the World Alzheimer's Congress. He also gave separate presentations at the congress both summarizing the state of Alzheimer's progress generally and focusing on his own research.
The 53-year-old Camden, N.J., native, who grew up wanting to become a Philadelphia Phillies announcer, is instead using his voice as the national Alzheimer's Association's favorite medical messenger. DeKosky, chairman of the association's medical and scientific advisory committee, helps everyone from congressmen and reporters to the advocacy group's millionaire donors understand the latest information about the disease.
Association officials describe the Mount Washington resident as a gold mine for their cause. He can bring the complex world of neurofibrillary tangles, amyloid precursor proteins and gene alleles to understandable terms, blending dry wit and comprehensible imagery.
"Steve is really an excellent communicator who can talk to almost any group of people. That's not a broadly distributed talent among scientists," observed William Thies, the national association's vice president for medical and scientific affairs.
In addition to work with the association, which he also serves as executive vice president, DeKosky juggles laboratory research, clinical involvement with patients and the administrative duties of directing the University of Pittsburgh's Alzheimer Disease Research Center the past six years. He is almost certainly the most knowledgable person about Alzheimer's in Pittsburgh, and among the top one or two dozen U.S. figures in the field.
It seems a long way from 1980, when DeKosky was still studying the brains of aging rats as an assistant professor at the University of Kentucky. His first significant research findings showed the extent to which the vital nerve cell connections in the brain, called synapses, break down as the degree of dementia in a person increases.
He remembers being amazed by the behavior of the first Alzheimer's patients he met.
"Nobody does things like AD patients do," DeKosky explained. "If you have this in your family, then somebody has a story about something that grandma did, like redoing the kitchen over and over again, putting shoes in the freezer, making cookies in the middle of the night, packing their bags to leave the house they've lived in for 30 years.
"AD patients do these strange things that help you make the diagnosis."
Though he's been spared the trauma of anyone close to him succumbing to Alzheimer's, he says, "I have a family of several thousand now with it."
Those are the 2,600-plus dementia patients who have been evaluated at Pitt since the medical school administration there began encouraging faculty work on the disease, well before DeKosky's arrival in 1990. The staff expertise based at prestigious Western Psychiatric Institute & Clinic helped Pitt land a spot in 1985 among the National Institute on Aging's second group of institutions to be awarded a federally funded research center.
The first five centers were established in 1984, and Pitt's is among 30 of them now. DeKosky's peers at the other institutions have elected him to multiple leadership positions among them. His moderate, consensus-building demeanor wins respect in a field where more dogmatic contemporaries push harder for their own theories about Alzheimer's causes and cures.
"He is a nice, friendly guy, well-spoken, who's an authority across the full spectrum of the disease," because unlike his peers, he's still seeing patients and talking to families as well as doing research and clinical trials, said Dr. Ron Petersen, who heads the Mayo Clinic's Alzheimer's research center.
The NIA gives the Pitt center about $1.5 million annually to administer free evaluations and treatment to the public; establish a database of all the patients examined and their progress with the disease; and coordinate Alzheimer's research among a variety of disciplines.
While traditionally earning distinction for its clinical care of patients, when compared to other research centers nationally, Pitt's emphasis on genetics and imaging research has grown in recent years.
Rather than a single operation with a large group of people focused on nothing but Alzheimer's and related dementias, the research center is actually a farflung group of neurologists, psychiatrists, neuropsychologists, neuropathologists, neuroradiologists and other medical staff in different buildings who work on the disease part time and receive partial salary support from the center.
The hub is the Memory Disorders Clinic in UPMC Montefiore which evaluates 150 or more new patients a year and monitors the progress of past patients. DeKosky presides over a weekly conference where about 20 professionals crowd into a room to debate the status of each patient examined the week before, determining whether to list them as afflicted with Alzheimer's and at what stage.
His calmly authoritarian effort to keep order amid conflicting opinions from the specialists can resemble Capt. Furillo's administration of the "Hill Street Blues" squad room. He couldn't follow the discussion recently over what dementia label to place on a patient because a diminutive neurologist paired near the door with a neuropsychologist towering over him were talking at the same time.
"Wait, wait, wait -- three voices at a time, please," DeKosky pleaded with gentle sarcasm, before commenting on the need for a brain scan of the patient. "We're not going to settle this today."
Part of the aim of the "consensus conference" is to match patients with the clinical studies the center helps administer that are always in need of participants. The studies, in which patients' participation is encouraged but not required, are funded by government grants in some cases and drug companies in others. The trials provide revenue to supplement the NIA funding and help the center operate, in addition to furthering the cause of Alzheimer's research.
When a company testing a drug uses Pitt's patients to evaluate its effectiveness, it pays the center as much as $10,000 per patient, with part of the funds covering the cost of monitoring the individual's progress.
"If you don't collaborate with these people, no progress will be made," DeKosky said of the need for academic institutions to assist drug manufacturers with products that might solve the Alzheimer's puzzle.
He is compensated only for expenses when doing work for the Alzheimer's Association, but DeKosky receives personal payments from Pfizer Inc., Novartis Pharmaceuticals Corp. and Janssen Pharmaceutica for consulting work he does for those drug manufacturers.
He also collaborates with other universities around the country on federally funded studies. His biggest clinical project now will be determining the benefits of a product derived from leaves of a Chinese tree.
DeKosky heads a five-year, $15 million, multi-city trial just under way for the National Center for Alternative Medicine. The 3,000-person study, one-fourth of them from Pittsburgh, is supposed to determine whether giving ginkgo biloba to healthy older adults will help them avoid developing Alzheimer's.
Some smaller, preliminary studies have sparked the interest in the product commonly available and used already by millions of Americans.
"This is very trendy," DeKosky said of ginkgo biloba, which has been in use in Europe for 1,600 years for other health purposes. "Everyone wants to know about these kinds of medications. It ignites a lot of passion as a natural remedy. If this drug turned out to delay the onset by one year, that would be a pretty powerful finding."
The attraction of ginkgo, and other potential prevention aids like vitamin E and estrogen supplements, is they are already proven safe and are relatively affordable. And if the five-year study shows little or no impact in slowing Alzheimer's, DeKosky said, "it can keep people from wasting their money and help them get to the doctor quicker."
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