The Tapscott Chair in Schizophrenia Studies, currently occupied by Dr. Arthur Petronis of the University of Toronto, was endowed by Don Tapscott and Ana P. Lopes – CM, and named, in the words of Don, “in memory of my brother Dave and in honour of our parents Don and Mary Tapscott who worked tirelessly for 15 years to keep Dave healthy.”
Before he became interested in technology and business, Don Tapscott actually began his career as a psychometrist and later a psychologist. His first job after graduating in psychology in 1970 was at the Penetanguishene Mental Health Center in the Oak Ridge Division for the so called ‘criminally insane.’
“I remember touring the now closed basement rooms -- essentially dungeons, complete with metal shackles on the walls to restrain and punish difficult patients.” Don wants to dispell a destructive and widely held myth about mental illness:
“There is a pernicious notion that mental illness is somehow a flaw or failure in a person’s character, rather than a treatable disease. As a society we pay a very heavy price for this false perception.”
He calls the stigma of mental illness the greatest roadblock to advancement in finding treatment for diseases of the brain. He is quick to point out some of the statistics:
- According to the landmark Global Burden of Disease study, commissioned by the World Health Organization and the World Bank, 4 of the 10 leading causes of disability for persons aged 5 and older are mental disorders.
- Among developed nations, mental illness is the leading cause of disability.
- Mental disorders contribute to mortality, with suicide perennially representing one of the leading preventable causes of death worldwide.
- In Canada, 300,000 people will be diagnosed with schizophrenia alone at some point in their lives.
- Schizophrenia accounts for one of every 12 hospital beds in our country ⎯ more than any other medical condition.
- Four of 10 schizophrenia victims attempt suicide. It ravages families.
- No one is immune. Most victims come from families with no history of the disease.
In 2000, Don Tapscott was the keynote speaker at the Canadian Psychiatric Research Foundation annual awards luncheon. He gave an inspiring talk during which he imagined what life would have been like for his brother, Dave, at various times in history.
"If Dave had become psychotic circa 1900, he would have been placed in an asylum – likely the Toronto Lunatic Asylum -- a horrific setting of chronic illness, isolated from the mainstream of medicine and society. He would have spent his life there under nightmarish conditions. If he did not somehow recover spontaneously his incarceration would have been lifelong. Circa 1950, Dave would probably have been sent to one of the Ontario Provincial Hospitals. If he were lucky he could have gone to the tiny Toronto Psychiatric Hospital founded by Dr. C.K. Clarke. While barbiturates were used widely to sedate patients, there were no antipsychotic drugs at the time. In the US and Canada, the main focus of investigation and treatment of mental illness was psychotherapy.
In a wonderful book entitled ‘A History of Psychiatry,’ Toronto’s Dr. Edward Shorter writes that, at mid-twentieth century, psychiatry became enraptured with the notion that psychological problems arose out of unconscious conflicts over long past events, especially those of a sexual nature. For several decades, psychiatrists were glad to adopt this theory of illness, he writes, especially because it gave them a way out of the asylum and into private practice, a higher income and a little social respect. Later in the 1950’s Electoconvulsive Therapy (ECT) came to be used as an effective treatment . Although portrayed as inhuman in popular culture (Jack Nicolson in One Flew over the Cuckoo’s Nest) ECT has brought symptomatic relief to many suffering from depression and psychosis. By 1970, when Dave did become ill, science had overtaken Freud and mental illness had returned to the fold of other medical specialties. Drug therapy was the treatment of choice for psychosis, based on early systematic experimentation into the chemistry of the brain. Researchers investigated the pathology of neurotransmitters like dopamine – the chemicals that transmit the nerve impulse from one neuron to another across a gap or synapse. The big breakthrough had occurred earlier with the invention of chlorpromazine – the first drug to eliminate the symptoms of psychosis, though not necessarily curing the underlying brain disorder. According to Shorter, chlorpromazine initiated a revolution in psychiatry comparable to the introduction of penicillin in general medicine.
But my brother wasn’t a big beneficiary. After his first psychotic attacks, we tried to get him into the Clarke but it was full. At 11 pm one winter night he ended up in a general hospital in Toronto that was visited, infrequently, by psychiatric professionals. Various new medications were tried, but in hindsight the doses given to him were likely 5-10 times greater than necessary. Such overdoses caused terrible side- effects for him and so he didn’t stick with them. As he told me one day, ‘when I’m off the drugs I might feel crazy but that’s better than feeling pulverized.’
Now let’s consider the present situation. What if Dave were in his early 20s and today became ill? Things would be very different for him. If he were fortunate and lived in a handful of cities like Halifax, London or Calgary he would be admitted into the first episode psychosis clinic of a hospital. In Toronto, where Dave lived, this would be the Centre for Addiction and Mental Health. Clinicians now know that early intervention is critical – and that with it most people can have an effective remission. And with appropriate long term treatment there is no reason for many people to have a relapse. A multi disciplinary team of medical, psychiatric and psychological personnel would conduct an extensive evaluation into the nature and causes of his illness. For starters, one would have much more faith in the correctness of the diagnosis. Was it schizophrenia? Or was Dave the victim of a psychotic depression? Or was he psychotic because of his use of amphetamines?
Diagnosis in mental illness and, for that matter, in all of medicine, is important because it is the basis of effective therapy and prognosis. There has been tremendous progress in the standardization of psychiatric diagnoses since 1970 and this is an important factor in effective treatments for specific psychiatric illnesses. Systematic and reliable approaches to diagnosis have facilitated the development of an evidence base on which current psychiatric treatments are founded. A correct diagnosis would enable the development of an optimal treatment plan, without the trials and errors techniques of the 1970s.
A second multi-disciplinary team consisting of medical, social work and occupational therapy professionals would be available to meet his needs and orchestrate his integration back into the community. In the 1970s ‘community integration’ meant sending people to the street or to unsupported families who had little chance of coping with the illness. Today there is a much greater appreciation that people need to be engaged on their own terms and treated in a comprehensive way that meets their complete individual needs.
But, by most accounts, even this year 2000 scenario – available to a small proportion of Canadians - pales in comparison to the improvements in the care of people with other diseases. A new patient at the Princes Margaret or Sick Kids has access to resources and a level of care that is almost infinitely better. Even today.
Now flash forward to today. We have learned more about the brain in the last decade than in all of human history. I am optimistic we could make even far more progress in the next few years. Someday in the not-to-distant future the following scenario will occur. Someone like Dave would simply never have a first episode. His illness would be diagnosed and prevented before it became manifest.
Current medications really only treat the psychotic symptoms (paranoid thinking and hallucinations). They don't in any way address the underlying abnormalities in the brain (caused by obstetrical trauma, genetic abnormality or other factors) that appear to develop during adolescence or earlier. Soon, there could be ways to help the brain follow a more normal developmental course. For example, there is a theory that schizophrenia results from excessive elimination of nerve synapses (connections between nerve cells) during adolescence compared to the rate of elimination seen in healthy individuals. If this turned out to be true, then it might be possible to develop medications that would slow this process down to a normal rate. Along the same lines, if schizophrenia is due to reduced functioning of inhibitory neurons in the brain, there may be medications that could enhance inhibitory function and prevent the emergence of psychotic symptoms.
In another future scenario, the evaluation of a blood sample after birth would identify a genetic predisposition to brain disease; or a vulnerability to amphetamine-induced psychosis or some other pathology and an effective preventative treatment would be implemented. This might involve some kind of gene therapy by which some genes could be modified to insure that a critical step in the development of schizophrenia does not take place. It might involve advising against exposure to particular forms of substance abuse.
Or perhaps in his early teens Dave’s GP, or a teacher or parent would identify pre-symptom evidence that he was having trouble coping – which we know today is often an advance warning of the onset of illness. A full preventative program could be implemented and Dave would have a great shot at a happy and fulfilling life, just like the rest of us.”
Don Tapscott told his audience that the future was not something to be predicted but something to be achieved. He pointed out that achieving it means funding it and right now mental illness is not attracting sufficient funding. He wants to understand why.
“Why have we been capable of marshalling the resources of society to attack other diseases but not those of the brain? To say the brain is more complicated is too easy. I believe we are paralyzed by an all-pervasive stigma that goes back centuries.We fear what we don’t understand. And fear gets in the way of doing the right thing. Perhaps we reject people whose behavior is outside the norm. Perhaps the people with diseases of the brain are disorganized, and almost by definition can’t lobby for themselves. Because these diseases often strike early in life, victims have no adult children, as in the case with many other diseases, to fight for them – to raise funds for research and to provide proper care. Stigmas die hard. I’m told of cases in Canada and the United States where wealthy parents have offspring tormented by mental illness, yet they turn around and bequeath their sizeable estates to an art museum or other charity rather than to combat psychiatric illnesses.
Perhaps the term mental illness is itself a misnomer – a throwback to the days when scientists thought there was a mind-body distinction. It was not Dave’s mind that needed effective treatment, it was the biochemistry of his brain. He didn’t need mental help – he needed a healthy brain free from disease, no less than he needed a healthy heart. He did not have a failing of his mind, or personality or character; he had a failing of his brain.”
Don Tapscott, speaking in December 2000, reminded his audience that the brain was no longer viewed as the backwoods of medicine, but its forefront. On October 9, 2000 the Nobel Prize in Medicine was given to three brain researchers - two molecular biologists and a psychiatrist - for pioneering discoveries into how disturbances in signal transduction inside nerve cells can give rise to neurological and psychiatric diseases.
“This work has already led to the development of important new drug treatments. The widespread popularity of Prozac has begun to make it acceptable to discuss depression. Many people have begun to tell their personal stories of mental problems and to help change public perceptions. I cannot overstate how important these initiatives are. Consider, for example, the courageous Michael Wilson who lost his son Cameron to illness. Under his leadership, the Centre for Addiction and Mental Health raised an unprecedented $12 million. The value of Michael Wilson’s work goes beyond just the money. He is helping create a climate where diseases of the brain can be discussed openly. We need a sea change in the public perception of these illnesses. Let’s stop whispering about mental health. Let’s start talking loudly and often. And there is a role in these discussions for every individual and every institution in this country. Governments, businesses, community groups, unions, and not-for-profits should all participate. Governments at all levels need to provide the kind of leadership they have shown in mobilizing support to combat HIV and AIDS.
I spoke earlier of the Blair government in the United Kingdom, which is doing great work to raise the profile of diseases of the brain. The government recently committed more than $1.5 billion in new funding for research and treatment of mental illness. In establishing goals for the national health care system, the government gave mental illness the same priority ⎯ which is to say top priority ⎯ as coronary heart disease. The government has established clear benchmarks of success, such as a 20 per cent drop in the national suicide rate within a decade.
In the United States, the first ever White House Conference on Mental Health in 1999 called for a national anti-stigma campaign. And the first ever Surgeon General’s Report on Mental Health noted that nearly half of all Americans who have a severe mental illness do not seek treatment. Most often, the reluctance to seek care is a direct result of the stigma.
Today we have nowhere near the proper level of funding. Research into schizophrenia, depression, bipolar disorders and other psychiatric disorders has been maintained at a paltry level compared to other major disease groups, such as cancer, heart disease, stroke, AIDS, or Alzheimer's. Quantum leaps in understanding illnesses of the brain will only come if funding is brought up to the level available for the study of these other diseases. If we are really serious about addressing these problems, then funding has to be brought even higher so that the most capable scientists will gravitate to this research area as has been done in the case of AIDS research. There is simply no excuse for the meager number of research dollars currently made available.
Perhaps government funding suffers from the stigma of mental illness. The false assumptions that are always made about mental illness being a personal weakness have tainted government policy on whether research could help understand these illnesses. Our political decision makers simply don’t believe that mental illnesses are as preventable, treatable or curable as diseases that attack other parts of the body. But they are. And since these illnesses arise from dysfunction of the most complicated part of the human body - the brain - enormous research efforts will be required to advance our knowledge.”
Don Tapscott is a business analyst and strongly feels that mental health is not only the Government’s responsibility. Private companies need to understand that mental illness is not just a social or ethical challenge but a business one. The Canadian Business and Economic Roundtable for Mental Health, initiated by Bill Wilkerson, estimates that Canadian businesses could save up to $7 billion over five years in prescription drugs and wage replacement costs if even one half of their employees who needed help for depression actually received it. Business cannot call for tax cuts on the one hand and ignore its responsibilities to shoulder the cost of social needs on the other.
What are the Business Stakes in Mental Health?
Don Tapscott:
Mental disability is a business cost.
In Canada alone, all forms of mental illness costs the country $16 billion a year, which represents about 14 per cent of the net operating revenue of all Canadian businesses combined.
The Royal Bank Financial estimates that more than a third of all short-term disability stems from mental health problems.
It is foreseen that the percentage of disability insurance and group health claims related to mental health will climb to more than 60 per cent of the total number of claims administered through business-employee plans over the next three to five years.
The average number of workdays lost to one case of depression is about forty, or $10,000 per absent employee for wage replacements and the company’s share of drug therapies under a group health benefit plan.
Depression is projected to be the leading source of work years lost through disability and premature death in developed economies by the year 2020.
The societal and economic costs of mental illness and chemical dependencies are three times the actual cost of treatment.
The next generation will be under even greater pressure, facing an uncertain, competitive and dangerous world – academic pressure, information overload, choices, broken homes, downsizing, recession, terrorism, war.
This is Tapscott’s advice to employers in the year 2000:
“Think of employees as investors of their intellectual capital. Is your company a good investment for them? Will you work to keep them creative, stress-free, and promptly treated if their develop signs of mental illness? Brains – the new capital – need to be treated at least as well as we treated the capital of money or machines of industrial capitalism. Let’s take the same approach to our employees’ mental well being as we do to their physical well being. We run workplace health and safety campaigns to cut down on the number of injuries. We put out big yellow caution signs when the floor is wet and slippery. Yet when it comes to creating a healthy workplace for the most important employee asset of all, as a country, we often do little.”
Tapscott was early in believing that the antidote for ignorance is knowledge and that the Internet is the right tool for demolishing stigma. As he said in 2000:
“As a stellar example of what can be done, a number of individuals and companies came together to create the “Open the Doors" Campaign and teamed up with the World Psychiatric Association -- closerlook, Inc. (www.closerlook.com ) For the last four and a half years, closerlook, Inc. has been working to fight the stigma and discrimination associated with schizophrenia. To date, the program has been initiated in 14 countries, including Canada, Spain, Austria, Egypt, Italy, India, and Brazil. A key component of the program is the website www.openthedoors.com where program participants can access the truth. Measurable results have been achieved in the countries where the program was pilot tested. These results included: changing admission procedures for emergency rooms nationally in Canada and changes in knowledge and attitudes among high school students in Canada and Spain.
This is a great initiative harnessing the power of the Net. I’m an admirer of the French novelist and philosopher Victor Hugo, who said: ‘There is nothing so powerful as an idea whose time has come.’ Perhaps the time has finally come for a fundamental change in public attitudes about brain disorders. The time has come for another $12 million and $120 million and $1.2 billion to give the resources our brilliant researchers urgently need to understand the real causes of illness and develop truly effective prevention and treatment programs. And hopefully the time has come for each of us to redouble our energies to make that future scenario for the young Daves of the world a reality.”
How To Help
View the Laboratory
The goal and motivation for Dr. Liu's research is to discover a new treatment for human brain disease that is translated into an actual drug. It is a simple goal but of course very challenging to achieve.
