Posted by Mr. SadPuppyDog on October 9, 2002, at 11:46:06
http://www.ama-assn.org/sci-pubs/amnews/pick_02/hlsa0819.htm
Brain diseases are a black-and-white issue for research psychiatrist E. Fuller Torrey, MD, who stakes out polemic positions on causes and treatments.
By Stephanie Stapleton, AMNews staff. Aug. 19, 2002. Additional information
--------------------------------------------------------------------------------E. Fuller Torrey, MD, is a psychiatrist who collects brains. He has lots of them -- 474 at last count. They're the Stanley Foundation brain collection, a tissue bank that is among the world's best brain research resources.
He also has lots of money. About $33 million worth. All in the form of scientific grants he oversees to advance research regarding schizophrenia and bipolar disorder. As director of the Stanley Medical Research Institute, he has a pocketbook for this specific research dwarfed only by that of the National Institute of Mental Health.
And he has lots of ideas -- ideas about the mysterious etiology of schizophrenia, the soundness of NIMH's brain research priorities and the necessity of treating people with severe brain diseases, especially those who are homeless.
Obviously, Dr. Torrey, 64, spends a considerable amount of time on matters of the brain -- matters that other people might consider gray.
But to him, there is no such thing.
He has been described as having a black-and-white vision of mental illness -- as being iconoclastic, dogmatic, single-minded, a renegade.
There are 474 brains in a Maryland tissue bank.
It's hard to believe. In person, he seems mild-mannered, more like a college professor than a well-known brain researcher and controversial advocate for the treatment of severe brain diseases. However, he is exactly the latter two things, inspiring reactions so strong that he is treated by some with cult-like loyalty and by others, even from his own profession, with virulent opposition.Dr. Torrey says the phenomenon is an unintended consequence, incidental to his real goal. "I always wanted to be a doctor, ever since I was a little boy, and I took great pride in being a doctor. Still do."
Giving good care to patients is critical to this sense of pride. It also motivates him to stay focused on his research and to advocate for his causes.
"I see it as kind of a multiplier effect. I see it all as being part of the practice of medicine. Just as if I had become a public health doctor or a pediatrician. I would try to make good care available to as many patients as possible."
Another source of Dr. Torrey's drive is an event that happened while he was in college. His 17-year-old sister was diagnosed with schizophrenia. "I probably would have gone into psychiatry anyway," he says. "But I probably wouldn't have specialized the way I specialized. She has been a continuing reminder to me of both the severity and the tragedy of this illness."
Other aspects of Dr. Torrey's career appear to be a result of his personality. His proclivity for advocacy and tendency to focus criticism on his own discipline surfaced early. "Even from my residency, it was clear to me that [psychiatry] had major shortcomings. For whatever reason, I have felt obligated to point them out."
The Stanley institute has a budget of $33 million for mental disorder research.
He has persistently chastised psychiatrists and psychoanalysts for focusing on what he terms the "worried well." "[These patients] were divorced by their third husband or fourth wife. They were unhappy." To him, these problems do not belong in medicine. They are not serious mental illness.He has also been an insistent contrarian regarding federal brain research funding priorities -- charging the NIMH with frivolous research spending. "In terms of actually focusing resources on severe mental illness, they are still hopeless."
Constituency groups react to him with indignation. So does the agency. "It is highly unusual for an advocate to push to destroy a major part of the institute devoted to his causes," notes an NIMH statement responding to a 2001 magazine article on Dr. Torrey.
It's no surprise, then, that he is often tagged as adversarial. So much so that Morley Safer described him during a "60 Minutes" interview as being "at war with the profession."
"To me that is not being at war with my profession, it is trying to bring my profession into the modern age. It is trying to make better treatment available to the patients," Dr. Torrey says.
Becoming respectable?
It isn't just these assertions that distanced him from the mainstream. His research on schizophrenia has often run counter to conventional wisdom.When Freudian thought ruled the day -- the notion that schizophrenia resulted from poor familial relations, perhaps an overbearing mother -- Dr. Torrey favored a biological cause. He calls it his "long-standing delusional disorder" that infectious agents, combined with genetic predisposition, cause most cases of schizophrenia and many, if not most, cases of bipolar disorder.
"One of Dr. Torrey's greatest attributes is that he is way ahead of his time ... ahead of science," says Robert H. Yolken, MD, a neurovirologist and pediatrics professor at Johns Hopkins University, Baltimore, who collaborates with Dr. Torrey.
In the early days, such sentiments were far less likely to be heard. "I was considered by my colleagues to be obsessed by the schizo virus," says Dr. Torrey. "Many found it to be very humorous." He published his first paper on the subject in 1972 and maintained his conviction despite excitement generated by the single-gene theory.
From the early 1980s on, there was a certain confidence, he says, that it was only a matter of time before the specific genes behind schizophrenia and the other severe brain diseases were unlocked. That research, Dr. Torrey says, turned out to be at least moderately disappointing. But a study of twins he conducted from 1988 to 1992 fueled his position.
It involved 68 sets of monozygotic twins. Of these, 28 pairs were discordant for schizophrenia. "Up until that time, the genetic paradigm was still really very prominent," explains Dr. Torrey. "They had the same genes but one had the disease and one didn't. I think that fact in itself said genes weren't the whole answer."
Evidence was also surfacing that blamed ulcers and athlerosclerosis on infections. "Lord, that was earth-shattering," he says, laughing. "I mean, we all knew ulcers were caused by stress -- we had been taught that for 50 years. The idea of a bacteria causing an ulcer was ludicrous. And then, it was not ludicrous any more. And if [these things] can be infectious, even schizophrenia may be infectious. ... People who were quietly making fun of us several years ago are now saying, 'You know, you may have something there.' "
Chasing the infection
In Dr. Torrey's work with Dr. Yolken in the Stanley Neurovirology Lab at Johns Hopkins University, the search for the infection is the task at hand. But they also work to discover how such infections could be transmitted to humans. And this, again, raises eyebrows. Dr. Torrey smiles when he acknowledges the nickname of one idea -- the typhoid tabby theory. But he sees the possibility that cats could be the culprits that introduce the operant infection, perhaps toxoplasmosis.But it's the infection that is the prize. "If and when we identify the infections, we will have much more specific treatments for these diseases," he says.
It could mean a dramatic change for someone like his sister, who has spent most of her life hospitalized, at one point for 25 straight years. Even though antipsychotic medications make a difference, she has never responded well to them.
If his research proves right, instead of pursuing these medications, doctors would test her spinal fluid for antibodies against, for instance, Toxoplasma gondii, and look for a particular immunological profile that suggests the toxoplasma is causing her symptoms. "We've got very good drugs to treat the toxoplasma very specifically, and we think we can reverse or at least ameliorate a lot of her symptoms. That's the theory," explains Dr. Torrey.
Still, the proof is elusive. And his pursuit of it drives another mission -- the brain collection. Now housed at the Uniformed Services University of Health Sciences in Bethesda, Md., the collection was started in 1995.
"My assumption has always been that until you look at the brain tissue, you're not going to solve these diseases," Dr. Torrey says. His first motivation in gathering the brains was for use in his own projects. But a decision was soon made to share the resource with others without charge -- a way to seduce scientists to do more serious brain research.
Since then, samples from a controlled grouping of 60 brains -- 15 schizophrenic, 15 bipolar, 15 severe depression and 15 normal -- have been sent to more than 120 laboratories. This grouping is known as the Stanley Neuropathology Consortium.
All that Dr. Torrey and his colleagues seek in return for use of the tissue is access to researchers' data. They take all the resulting findings and combine them in a single database for analysis. "We will eventually end up with the best description of what is wrong in the brains of individuals who have schizophrenia, bipolar disease, and severe depression, compared with normal controls."
In a related project, Dr. Torrey is working with colleagues to finalize the Stanley Array Collection -- which involves RNA extracted from another standardized, controlled brain grouping. It will allow researchers to use microarrays to study hundreds and thousands of proteins or genes at the same time.
How it all fits together
Time spent on the brain collection now is an investment in future advances. But to Dr. Torrey, there is also an immediate need. Trying to meet it has propelled him into the center of a tricky civil rights debate -- whether people with schizophrenia and severe brain disease should be forced to take their medicine.He says his activism here is a direct result of his experiences treating people with severe mental illness, especially those he saw during his 16 years volunteering in Washington, D.C.'s homeless shelters. "It seemed to me that as a physician, I had a responsibility to try and do something."
The "doing something" stems from his belief that many of those with schizophrenia and bipolar disorder have brain damage impairing their ability to recognize their own illnesses. Others disagree. "This is where Fuller Torrey gets slippery" regarding constitutional issues, says Michael Allen, a senior staff attorney at the Bazelon Center for Mental Health Law in Washington, D.C.
Overall, Dr. Torrey argues for what his opponents view as draconian policies -- for the necessity of community-ordered treatment in some cases; for laws that enable people with the most severe brain disorders to receive assisted treatment; and for the assurance that people with such disorders receive adequate psychiatric services and maintain medication compliance upon hospital release.
Opponents consider this approach extreme because they say it jeopardizes civil liberties. "It is not enough for a treatment approach to be based on the belief that [someone] thinks they know what is better," says Allen. "We maintain that medication should be a matter of choice."
Dr. Torrey acknowledges that Bazelon Center and groups such as the American Civil Liberties Union have articulately raised their issues. That was the impetus for the creation of the Treatment Advocacy Center, an organization started four years ago to provide the other side of the argument. He is the group's president. And his advocacy role there makes him a lightning rod for criticism.
First, there's the charge that forced treatment devalues people with mental illness.
"I can argue that every time [they] protect the civil liberties of a woman with schizophrenia who is living on the streets, [they] are devaluing her," says Dr. Torrey. "By getting her involuntarily treated, and successfully treated so that she is able to live a more normal life on medication, I am doing exactly the opposite."
Next, the violence issue. He is criticized for blowing out of proportion the statistics about violent episodes by people with severe mental illness and for contributing to the stigma. "I think that's the greatest damage Fuller Torrey is doing these days," Allen says.
"My answer to that is they've got it completely turned around," counters Dr. Torrey. The single largest cause of stigma against people with severe mental illness is the headline in the New York Daily News that says, 'Another woman pushed in front of subway by psychotic individual.' " He maintains that the only way to reverse public fears about violence and mental illness is to address the issue of those people with severe illnesses that go untreated.
And perhaps this is how the pieces of Dr. Torrey's professional life fall into place. There's his expectation that the next five to 10 years will offer stunning progress in regard to knowledge about schizophrenia and bipolar disorder. "My dearest hope is that I live long enough to see the causes of schizophrenia and bipolar disorder largely solved."
When this happens, Dr. Torrey expects it to be accompanied by the possibility of better treatments. He believes the resulting understanding will clarify these other sticky issues -- who should be treated involuntarily and how the law and the courts factor in.
"So if you ask me to choose between spending two more hours on our brain collection or two more hours trying to change the laws of the state of Wisconsin, I'll put my time on the brain collection. We'll sort out the laws based on what comes out of [that]," he says.
"That doesn't mean I should ignore the laws of Wisconsin. I think we still have to try and treat the people who are out there today as best we can."
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ADDITIONAL INFORMATION:
The Torrey story
Personal
64 years old
Married 34 years to Barbara, an economist; two adult children.Professional highlights
1964-66: Peace Corps physician, Addis Ababa, Ethiopia.
1970-75: Special assistant to the director, National Institutes of Mental Health, Washington, D.C.
1975-76: Chief, Pribilof Health Services, Indian Health Service, Alaska.
1977-85: St. Elizabeth's Hospital, Washington, D.C.
Author of 15 books and more than 200 lay and professional papers.Education
Princeton University, BA, 1959.
McGill University School of Medicine, MD, 1963.
Psychiatric residency, Stanford University School of Medicine, 1970.
Stanford University, MA, anthropology, 1969.Hobbies
Kayaking, classical music, opera, grandchildren; a self-avowed sports junkie.
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