In the fall of 2012, I heard Robert Whitaker speak at a mental health recovery conference. Whitaker received several national awards and was a Pulitzer Prize finalist for articles he wrote about the pharmaceutical industry and problems in psychiatric research. Before writing his first book, "Mad in America," he believed in the conventional treatment of schizophrenia and the need for a lifetime regimen of antipsychotic medications (also called neuroleptics) for those so diagnosed; the psychiatric experts he interviewed described these medications as necessary to correct a chemical imbalance in the brain, specifically, an oversupply of dopamine. However, while writing a series of articles for the Boston Globe in 1998, he found two studies that raised serious questions about the treatment of schizophrenia in the United States and other developed nations:
A study by Harvard researchers in 1994 (Hegarty, J., et al.) reported that outcomes for individuals with schizophrenia in the United States had worsened over the prior 20 years and were now no better than outcomes in 1900.
Two World Health Organization (WHO) studies concluded that schizophrenia patients in the world's poorer countries fared so much better than those in the United States and other richer countries that they believed that living in a richer, more developed nation was a "strong predictor" that a person diagnosed with schizophrenia would not recover. The WHO studies, published in Psychological Medicine 20 and Psychological Medicine 22 in 1992, noted that in the poorer countries only 16 percent of schizophrenia patients were maintained continually on antipsychotic drugs, compared to 61 percent in the United States and other richer countries.
Whitaker said that subsequent research of the scientific literature on schizophrenia and antipsychotic medicines led him to important information: The development of neuroleptics was based on the belief that people diagnosed with schizophrenia have an overactive dopamine system in their brains; neuroleptics block the brain's dopamine transmissions. Whitaker notes that researchers in the 1970s and 1980s were unable to find evidence to support this theory and one of the founders of psychopharmacology, Pierre Deniker, said in a Scandinavian peer reviewed scientific journal (Acta Psychiatrica Scandinvavica, 1990): "The dopaminergic theory of schizophrenia retains little credibility for psychiatrists."
Whitaker found that while several studies have shown that the use of neuroleptics for schizophrenia patients over the short term were more positive than their unmedicated counterparts, long term studies show poorer outcomes. Whitaker writes about two of these studies in an affidavit submitted in Suffolk County, Massachusetts:
In the 1970s, the National Institute of Mental Health conducted three studies that compared antipsychotic treatment to "environmental" care in which medication was minimized. In each instance, patients treated without drugs did better over the long term than those treated in a conventional manner. This led NIMH scientist William Carpenter to conclude that "antipsychotic medication may make some schizophrenia patients more vulnerable to future relapse than would be the case in the natural course of the illness."
In the 1970s, two physicians at McGill University, Guy Chouinard and Barry Jones, offered a biological explanation for this. The brain compensates for the blocking of dopamine receptors by increasing the density of the receptors by at least 40 percent. Thus the brain develops a supersensitivity to dopamine, and as a result, the person has become more biologically vulnerable to psychosis than he or she would be naturally. The two Canadian researchers wrote: "Neuroleptics can produce a dopamine supersensitivity that leads to both dyskinetic and psychotic symptoms. An implication is that the tendency towards psychotic relapse in a patient who has developed such a supersensitivity is determined by more than just the normal course of the illness."
Whitaker notes that there are some problematic side effects associated with the use of antipsychotic medications, including:
Tardive dyskinesia, characterized by sudden, uncontrollable movements of voluntary muscle groups. Signs of classic tardive dyskinesia normally consist of coordinated, constant movements of the mouth, tongue, jaw and cheeks.
Akathisia, a syndrome characterized by unpleasant sensations of inner restlessness that manifests itself with an inability to sit still.
Emotional and cognitive impairment - an impairment in the ability to feel emotions and to learn and retain information.
Whitaker spoke about a treatment approach in Finland called Open Dialogue Therapy; the affected person has withdrawn into "monologue," into his or her own world, and this approach brings mutual and open dialogue to the table. One of its creators is quick to say that it is not a specific therapy model, but rather a philosophical approach. An initial open meeting with the treatment team, the affected person and his/her family, happens within 24 hours of notification. At all meetings the affected person and his/her family are included in all discussions and decisions, including those about obstacles that must be overcome and what course of action is needed for recovery. Antipsychotic medication is considered as a short term option, but not automatically used. The results of this approach are incredible. In a five-year follow-up study in 1997, 81 percent of people experiencing psychosis who were treated with Open Dialogue Therapy were not experiencing any symptoms and had returned to employment or schooling. That figure rose to 84 percent by 2005.
Hearing Robert Whitaker speak and reading his two books (Anatomy of an Epidemic is the sequel to Mad in America) has been quite a thought-provoking experience. There is still much about the brain that is a mystery to us and controversy often surrounds the treatment of its malfunctions. At the very least, this information provides hope for more positive long term outcomes in the treatment of schizophrenia.
Miriam Keith is consumer support coordinator of the Washington County Mental Health and Addiction Recovery Board. Mental Health Matters appears on the Opinion page on the first Saturday of each month.