Constance E. Lieber, president emerita and long time donor, Brain & Behavior Research Foundation, continues to push for a better life for her daughter and the millions of others living with mental illness
From The Quarterly, Spring 2011
For more than a quarter of a century, Constance and Stephen Lieber have provided unwavering moral and material support on the quest to unravel the mysteries of the brain to better understand and treat mental illness. Through their association with the Brain & Behavior Research Foundation, formerly NARSAD, and through their endowment of academic research centers, professorships, research scholarships and awards, Connie and Steve, as they are known throughout the mental health community, have contributed significantly to revolutionary advances in the field.
“There was a time when psychiatry was a beggar at the science table, but now,” as Mrs. Lieber enthusiastically notes, “brain research is at the forefront of the scientific endeavor.”
In contrast, her view of current efforts to provide help to people with mental illnesses is less rosy. She sees the national mental health scene as hobbled by “inadequate recognition of the staggering problems incurred by mental illness.” And, she says, “The real and present potential for rehabilitation and recovery is too often impeded by insufficient services for patients and families, insufficient dissemination of information and insufficient funding for research.”
Mrs. Lieber’s evaluation is cause for serious concern. It is based on a 30-plus-year intimate acquaintance with the mental health field. Mrs. Lieber’s knowledge stems from her own personal struggle as a mother, her work with countless other struggling families, and from her immersion into the psychiatric community and the science of mental illness as she led the development of NARSAD. Of the immeasurable emotional, physical and financial burdens of caring for a family member with mental illness, she says, “It’s a full time job. It takes a toll on everyone in the family, and the psychological fallout can be devastating.”
Frustration finds outlet with founding of NARSAD
The Liebers’ personal confrontation with mental illness began in the 1970s when their daughter, Janice, was diagnosed with schizophrenia. Their ensuing frustration with the limited treatments available, exacerbated by the stigma associated with mental illness, less prevalent today but far from eradicated, led them to want to learn all they could about the field. What they learned instilled in them the overwhelming conviction that what was needed above all was more scientific discovery into these illnesses: discoveries to understand what causes the illnesses to occur, to identify new treatment options and to light the path toward prevention and cures. The opportunity to put this conviction into action came just a few years later, in the early 1980s, via a fortuitous meeting with Columbia University psychiatrist Herbert Pardes, M.D., at a conference on schizophrenia. “Herb mentioned that a new organization was being formed to foster research on brain and behavior disorders,” Mrs. Lieber recalls, “and I said to Steve, ‘that’s for us.’”
The couple became the principal early backers of the fledgling National Alliance for Research on Schizophrenia and Depression (NARSAD). They became members of the board of directors, of which Mr. Lieber is currently chairman. Dr. Pardes, now president and CEO of New York-Presbyterian Hospital, was the founding president of the organization’s Scientific Council, a post he still holds. It was during the course of Mrs. Lieber’s tenure as second president of Brain & Behavior Research Foundation (then NARSAD), from 1989 to 2007, that the organization grew to become the world’s largest private funder of brain and behavior research, awarding hundreds of grants annually to scientists throughout the world.
The recent change of name to the Brain & Behavior Research Foundation more accurately reflects the broadened range of the conditions under study by the scientists it supports. Through her years with the organization, Mrs. Lieber has seen firsthand the fears and frustrations faced by patients, family members and mental health professionals, many of whom seek information and counsel at the foundation’s public education events.
Progress comes at a cost
Mrs. Lieber concedes that, overall, the picture has improved since the time her daughter first fell ill, at least for those families like hers, who have access to up-to-date information and live within range of good medical and social services. The first real break for the Liebers came in the late 1980s, when they learned about a new medication, called clozapine, still in clinical trial, which was meant specifically for schizophrenia patients like Janice who were unable to cope with the side effects of the existing antipsychotics. As it happened, clozapine was being tested with the most severely affected patients with schizophrenia by Herbert Meltzer, M.D., a member of the Brain & Behavior Research Foundation Scientific Council. Based on his advice, Janice was put on clozapine. It was the first antipsychotic she was able to tolerate, more than 10 years after her initial diagnosis, and her condition stabilized.
The psychotic symptoms of schizophrenia – the voices and hallucinations – are the first perceived and most dramatic manifestations of the illness, but it is the cognitive problems – deficits that develop with such processes as attention and memory – that can cause the most deleterious and long-lasting effects. Janice is currently enrolled at the Learning Center, a program developed by Dr. Alice Medalia, director of psychiatric rehabilitation at Columbia University Medical Center, to help people with mental illnesses improve their cognitive skills and social interaction. It’s “a wonderful program for those who can afford it,” Ms. Lieber says. “That’s the rub.”
Her long involvement with mental health issues has fostered in Connie Lieber a passionate conviction of the need for providing more hope and help to people with mental illness, and not just for people with the means to pay for services. She has strong opinions about the measures that need to be taken, and that can and should be taken. Still at the top of her list is “research, research and more research. But,” she insists, “we have to fund recovery as well. A lot of people don’t believe in recovery, but people can recover. We desperately need more remediation services.”
Recovery is possible where science, society and service converge
One way affordable services should be made available, she says, is through community-supported mental health centers. She also points to donor-supported facilities such as Fountain House in New York City. At Fountain House, people recovering from mental illness volunteer their time to help run the organization, which provides connections to education opportunities, housing, jobs and other rehabilitative services for the mentally ill.
She stresses the need for “more services up and down the line, because so many are suffering and don’t know where to turn. There need to be resources in every community where people can go to find a full range of treatments – medical, psychological, behavioral, cognitive. There has to be a reevaluation of clinical practice with an emphasis on rehabilitation. People have to inform themselves and take action to urge Congress to support the National Institute of Mental Health and to advocate for more funding for both research and support services.
“The scientific progress has been impressive,” Mrs. Lieber says. “We are now in a period where more accurate, earlier diagnoses can be achieved and more and better treatments developed, but,” she adds, “opening pathways to recovery cannot be achieved simply through the individual efforts of patients and caregivers. It requires the combined efforts of a large scientific community and a society dedicated to overcoming these disorders. The evidence that combined societal and scientific effort can produce results is beginning to emerge. Patients and their families can now begin to see the possibility of a normal life.”