THIS ARTICLE refers to events from when I first began writing about this issue, back in 1999. Nevertheless, until we develop better treatments and a more responsive health and social services system, the issue - unfortunately - will always remain current. Thus ...
A man in the crowd was acting strangely. Then, he wheeled about and shoved Edgar Rivera, father of three, onto the tracks as the No 6 train screeched into Manhattan's 51st Street Station. The victim's legs were severed.
Police arrested Julio Perez, 43, a homeless man with schizophrenia and a long history of violence. The event, which occurred on April 28, 1999 was eerily similar to another subway attack in January. In that case, Andrew Goldstein, a 29-year old with schizophrenia considered by those who knew him as gentle but weird, pushed Kendra Webdale, who dreamed of being a writer, to her death in a subway station.
Starting from 1995, Julio wandered the streets of New York City, shuttling back and forth between homeless shelters, mental institutions, the streets, and outpatient clinics. In February 1999, he began experiencing paranoid delusions which escalated in March and resulted in his eviction from a shelter. Although a caseworker recommended that Julio be hospitalized, this did not happen.
Two weeks before the subway incident, Julio called a friend, panic-stricken because he needed medicine and his Medicaid card had been canceled. Two days before the attack, he again called his friend, saying he wanted to go into a hospital, but he failed to make a planned rendezvous. On the day of the attack, he actually presented himself in the emergency room of a VA hospital, and later that day appeared at a police station and a courthouse to file a complaint against his "enemies".
Then he made his final stop.
Andrew's story is not far different, notwithstanding more promising beginnings. He graduated from a New York high school for gifted students, despite early signs of schizophrenia. His illness intensified during college and he was admitted to a state-run hospital in Queens. Eventually he settled into a small basement room. According to fellow tenants, he would fail to take his medications, which left him disassociated and lethargic, with stiff muscles.
Andrew's records revealed a classic case of "slipping through the cracks" in the system, of a desperate person begging and being denied the care he needed and ultimately winding up on the streets untreated and without supervision.
A state report noted that Andrew, as well as his mother and social workers, repeatedly tried to get him supervised services, only to be turned away. Eighteen days after his last discharge he killed Kendra Webdale.
But New Yorkers did not know that at the time. To them, he was just some crazy man who had refused to take his medications.
The subway attacks resulted in a public outcry that ended in an "assisted outpatient treatment" measure called "Kendra's Law". The legislation authorizes judges to issue orders requiring people to take their medicine, regularly undergo psychiatric treatment, or both. Failure to comply could result in commitment for up to 72 hours.
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The Treatment Advocacy Center campaigned successfully for Kendra's Law and for "assisted outpatient treatment" in other states. The driving force behind TAC is E Fuller Torrey MD, author of "Surviving Schizophrenia" and "Surviving Manic Depression," and instrumental in turning NAMI into a national organization.
Assisted outpatient treatment is referred to as forced treatment or involuntary treatment by various civil liberties groups and a lot of patients who fear a medical police state. Most vocal in their opposition is the "antipsychiatry movement," composed in large part of patients who suffered psychiatric abuses in state institutions decades ago.
But civil liberties is not an issue when you have no insight into your illness, Dr Torrey told an enthusiastic gathering at the 2006 NAMI convention. "If you don’t know how sick you are, you’re going to remain homeless and in jail forever," he advised.
To understand where Dr Torrey is coming from, one needs to get up close and personal. Read on …
A Father’s Agony
NAMI was founded in the 70s by the parents of individuals with severe mental illness, usually schizophrenia. At the 2006 NAMI convention, I had the pleasure to meet some of these parents, people in their seventies and eighties looking after kids in their forties or fifties. Their love and courage is the only thing keeping their kids from a life of stink and squalor and victimization, and the clock is ticking. The mental health system – such as it is – doesn’t want to know about their children.
These parents bitterly recalled the bad old days when Freudian psychiatrists called schizophrenia a behavior and blamed THEM for their children’s condition. Today we know better, but the system remains horribly broken. No one explained this better than a newcomer to NAMI, the investigative journalist Pete Earley, author of Crazy: A Father’s Search Through America’s Mental Health Madness.
Pete Earley belongs to a new generation of NAMI parents, a fifty-something father wondering what the hell will become of his twenty-something son, Mike. A few years prior, Mike, a college graduate, went off his Zyprexa and flipped into wild psychosis. The doctors refused to treat him, as the patient’s consent was required, even if Mike was too far gone to make a rational decision. Pete had no choice but to bring his son back home with him. There, Pete was reduced to helpless bystander status as Mike sat in front of the TV with a makeshift helmet made of foil to fend off the enemy zapping his brain.
Legally, Mike was no threat to himself or others, so he could not be forced into treatment. A couple of days later, Mike broke into someone’s home and took a bubble bath. It took six police and a police dog to subdue him. Fortunately, none of the officers had an itchy trigger finger. Now the authorities could intervene with treatment. The catch was a felony charge now hung over Mike. The home-owners felt sufficiently violated to go for legal overkill. As Pete explained to a session at the NAMI convention, "We’ve made them criminals as well as mentally ill."
A Journalist Investigates
Pete’s wife urged him to do as a journalist what he could not do as a parent. He would talk to people and write about it. Thanks to an enlightened Miami County judge, Steven Leifman, Pete gained access to that city’s notorious ninth floor in the Miami-Dade County jail. Some of the individuals inside had been awaiting trial for years, shunted from one unspeakable hell-hole to another.
Pete also worked the streets, telling the tragic stories of the lost lives there, of individuals lost in delusion, dying in slow motion, exposed to every form of degradation imaginable. Unfortunately, the streets are their only refuge. Hospitals throw them out the door. In the few available public facilities, slaughterhouse animals receive better treatment. Private contractors exploit them as prey. Inevitably, these individuals wind up back in jail. Jail and the street, back and forth, an endless cycle of national shame.
And there is Pete’s son Mike on the cusp. He could gain control of his illness and lead as full and productive and rewarding a life as his celebrated father. Or something could go horribly wrong and an unforgiving system may wind up condemning him to the terrors his father so eloquently wrote about.
The Adherence Issue
At a different session at the same NAMI conference, Stephen Goldfinger MD of the State University of New York noted that doctors never have to argue with their patients to take Percodan or Valium. These meds work fast, he explained, they deal with the problem at hand (as opposed to a med that may prevent a problem from developing), and they actually have side effects you want.
Dr Goldfinger added that it is important to get the patients to feel better, socialize better, sleep better, and so on. Patients will be adherent, he said, if the meds do their real job in this regard. No patient, he added, walks into his office saying, "I’m having trouble with my PANSS score."
Suzanne Vogel-Scibilia MD is a psychiatrist in private practice as well as a bipolar patient and at the time president of NAMI. At the same NAMI session, she referred to Ben Franklin’s famous dictum: ""The definition of insanity is doing the same thing over and over and expecting different results."
"Expecting people to adhere," she said, "is a fatally-flawed concept." Even doctors, she said, citing a study, do not adhere to the additional time they need to stay on their antibiotics.
First, she said, we are talking about illnesses with no known cause. Then we have meds that first make us worse. Finally, we have a health system that seems specifically designed to make us fail.
At the the 2006 International Society of Bipolar Disorders Second Biennial Conference Jan Scott PhD of the University of Newcastle upon Tyne cited some sobering facts. Thirty to forty percent of patients with bipolar, she said, are not taking their meds as prescribed. Irregular medication use is one of the strongest predictors of hospitalization and increased costs, according to one study, with twice as many hospitalizations lasting four times longer and costing four times as much, according to another.
Dr Scott co-authored a 2003 study that found that there was a major discordance between why patients quit taking lithium and the reasons their clinicians believed they quit. Patients who quit reported being bothered by the idea that their moods were controlled by medication, by the idea of having a chronic illness, and feeling depressed as the three most common reasons. In contrast, the clinicians felt their patients quit owing to "missing highs" and feeling they no longer needed to take their medication once they were well.
Adherence - The Crux
With schizophrenia, the adherence rate is even lower. The NIMH reports that only one in five patients with schizophrenia recovers completely. One problem is that antipsychotics work reasonably well against psychosis, but may make other aspects of the illness worse. Individuals who have trouble thinking to begin with may have even more trouble. Then there's the whole issue of flat affect getting a whole lot flatter, not to mention a side effects profile from hell.
Who in their right mind wants to live like that?
As Edward Scolnick MD, president emeritus of Merck Research Laboratories, told a NAMI convention three years earlier, "no one really knows how to make a better version of Clozaril."
If only the pharmaceutical companies would put some effort into making a "smart dopamine med." But what is their incentive? In 2006, the industry earned $18 billion in sales worldwide from the "dumb dopamine meds" already in their inventory.
NAMI parents are desperate. At their own conventions, they hear experts telling them what cruel jokes these so-called medications are, yet they want to believe. An antipsychotic can make their sons and daughters not crazy, but it can't seem to get them well. These meds can keep their kids from flipping out and thinking bizarre thoughts, but they do not address the more fundamental cognition difficulties, and often perform their limited function at the price of a debilitating no-life.
The parents want to believe these meds are the answer, that somehow everything will turn out okay. If only their kids would take their meds.
Of all things, it turns out, their kids had the answer all the time, and researchers, the FDA, and even the drug industry are responding to their smoke signals.
What is the one drug taken by 85 percent of individuals with schizophrenia that they are 100 percent compliant with?
Answer: Nicotine. According to Schizophrenia.com, 85 percent of those with schizophrenia and two in three with bipolar are heavy smokers. Nicotine plays a very important role in cognition in the brain. For the very brief time that an individual has a cloud in the lungs, a cloud lifts in the brain.
This suggests that far from lacking insight into their illness, individuals with schizophrenia very much appreciate the value of having an operational brain, albeit for one or two precious seconds. And far from being oppositionally non-compliant, nonpsychotic individuals with schizophrenia are rationally willing to put up with a "medication" with the worst side effects profile in the world.
Imagine how compliant they would be with a long-lasting med with much more benign side effects.
As it turns out, enlightened researchers have learned from schizophrenia patients. A number of nicotine medications are in the development pipeline, together with a range of cognition meds that target novel brain circuits.
If just one percent of those who take them actually get their lives back, then we will be witnessing a miracle. Time will tell ...
Reviewed Dec 2, 2016.
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