when the Vices STOPPED

ON A PROMISING SPRING morning almost three years ago, Stephen Ward* awoke to a silence he had not known in years. He had slept peacefully without dreaming, and this morning there were no voices commanding him to follow, no unbidden images to horrify him-only the muffled hum of early morning traffic outside the window and the hurried click of heels along the tiled hallway outside his small apartment. The voices that had dogged Stephen day and night for the last seven years had finally been silenced.

Remembering the grooming skills he had learned the year before in the halfway house, he carefully combed his hair, brushed his teeth and pulled on clean slacks and a pressed white shirt. He was ready for his first day at work. It was the start of a new day and a new life.

* Stephen Ward’s name has been changed SCHIZOPHRENIA ROBBED Stephen of most of his 15 young adulthood. From the age of 19, he lived in a nightmare of voices and delusions. While his friends dated, finished college and embarked on careers, Stephen struggled just to get up in the mornings. “I’d sleep 16 hours a day or more to shut out the voices. I’d sleep so long I’d get a headache. Then I’d turn around and sleep some more to shut out the headache.”

As his illness worsened, even sleep could no Ionger keep the voices at bay. “I was feeling very tormented all the time,” Stephen says “I’d beg the voices just to let me sleep.”

He was committed to psychiatric hospitals nine times. Doctors plied him with scores of anti-psychotic drugs in dozens of different doses and combinations, but the medications only sedated him or made him sick. Nothing was powerful enough to halt the voides and nothing lessened the delusions-Stephen believed he owned Fort Knox land had been chosen by (hod to prepare the world for the second coming of Christ. Between hospitalizations, he often lived on the Streets.

By the time Stephen was 26, doctors held out little hope, lumping him among the unlucky one-third of schizophrenics who are “treatment resistant.” His parents, emotionally exhausted and financially broken, expected that their eldest son would spend the rest of his 1ife in an institution. Worse they feared he would die a i early death, as many schizophrenics do, from suicide or from malnutrition or exposure from living on the streets.

A breakthrough drug called Clozapine, marketed under the name Clozaril, saved Stephen’s life. “It’s a miracle,” his mother says. “I never dared dream he would be normal again.” Unlike traditional antipsychotics. Clozapine rids patients of hallucinations, delusions and voices without causing tardive dyskinesia, a debilitating disorder that makes the jaw and tongue move up arid down uncontrollably. After only a few wears of treatment with traditional anti-psychotic drugs such as Thorazine, Haldol and Stelazine, the uncontrollable movements often progress to the arms and trunk.

“It used to be that we had a terrible choice,” says Dr. William H. Reid, medical director of the Texas Department of Mental Health and Mental Retardation and chair of the National Clozapine Task Force. “If you had a chronic schizophrenic who required medication to stay sane, you either gave it to him until his arms flailed so much he couldn’t feed himself, or you took him off it, taking away the most effective part of his treatment.” Either way, he says, schizophrenics rarely led normal lives.

“Even when we said patients were ’doing well’ on drugs like Thorazine, the weren’t really doing well at all,” Reid continues. “They couldn’t hold jobs, live on their own or get married and have a family.” But Clozapine helps schizophrenics actually think more clearly, making it possible for many to lead normal lives.

More significant is Clozapine’s ability to help the most treatment-resistant schizophrenics. While 60 percent of those who try Clozapine improve, very often it is the most seriously ill who make the most dramatic recoveries. “About one-third of those who try Clozapine experience the kind of response that we liken to a Rip Van Winkle effect,” says Reid. “That term really isn’t an exaggeration. What we are seeing with Clozapine suggests that is an accurate description.”

Many cases of dramatic recovery are not as clear-cut as Stephen’s. “Many of these people have been in the back wards of state hospitals for 20 years and their progress isn’t as easy to see as those who are already living in rehab or at home,” says Reid. “Their hallucinations may be gone for die first time in their lives, but they are far from being ready to leave the hospital and get jobs.”

What makes Clozapine work remains a mystery. Although Clozapine is an anti-depressant, many scientists believe it works in much the same way as traditional anti-psy-chotics are thought to work, by blocking dopamine receptors. Dopamine, an essential chemical to normal brain activity, facilitates communication between nerve cells. Researchers think there are many causes of schizophrenia, however, the prevailing theory is that the brains of schizophrenics may produce too much dopamine. When this nerve activity goes haywire from excess dopamine, “islands” of small electrical storms are created in the brain’s frontal or temporal lobes. These storms call up fragments of memory and then put the fragments together in bizarre ways, causing hallucinations and voices. Clozapine blocks the excess dopamine much more selectively and effectively than other medications. Because of its selectivity, the drug causes few, if any, side effects.

“It’s a wonder drug in the sense that it is the biggest advancement in the treatment of schizophrenia since Thorazine was introduced in 1957,” says Dr. Kenneth Alt-shuler, chairman of the Department of Psychiatry at the University of Texas Southwestern Medical School. With other drugs, schizophrenic patients can become sedated, which tends to mask their emotions and personality- Schizophrenia also often causes its victims to appear emotionless and apathetic. Clozapine helps rid them of these symptoms. “People’s personalities are able to emerge for the first time,” says Altshuler. “To see something like that happen is really exciting.”



STEPHEN AND HIS PARents squeeze into a back I booth of a Red Lobster restaurant on one of Stephen’s infrequent nights off work. He hasn’t missed a night selling up banquet rooms at a North Dallas hotel since he started taking Clozapine two years ago-quite an accomplishment for someone who had not been able to hold a job for more than a few weeks at a time. He works the graveyard shift now. often on the job 14 hours. “Just the feeling of working, it energized me,” he says, his eyes twinkling under tinted glasses and unruly tufts of thick brown hair.

Stephen, dressed comfortably in an earth-toned plaid shirt that he has left untucked over faded jeans, talks easily about the ordeal that finally ended when he began weekly doses of Clozapine. His mother is a registered nurse, and his father, formerly in the computer service industry, has just started his own personnel recruitment business. “It’s the best it’s ever been,” his father says, smiling at his 29-year-old son. Stephen sees his parents once a week or so. and tonight he and his father discuss the sagging shocks on Stephen’s 1981 Toyota Tercel. Two years ago Stephen wouldn’t have been able to carry on a rational conversation, much less live a productive life on his own. “Stephen is really self-sufficient now.” his father says. But Stephen relied a lot on his parents’ help in learning how to live alone. They worked step by step, teaching him everything from how to clean his apartment to how to balance his checkbook. And Stephen has learned quickly. “I figured oui how to keep my apartment clean by dividing it into stations, like at work.” he says, “I don’t see how a person with mental illness can make it without help from family. We have so few resources to help ourselves.”

Stephen has far exceeded everyone’s expectations, but the high cost of Clozapine-in the United States it costs an average of $9,000 a year-threatens to tarnish a bright and promising future. Without daily doses of the medication for the rest of his life, the voices and delusions will return. But Stephen and other schizophrenics have no idea how much longer they will be able to stay on Clozapine.

Stephen’s childhood was, by anybody’s account, a normal, happy one. When lie was 4, the family moved to Flower Mound, a semirural suburb near Denton. Stephen and his younger brother and sister loved to pick wild blackberries that flourished in the fields surrounding their home, leaving buckets of them on the kitchen counter for his mother’s cobbler. “He was sort of a Huckleberry Finn,1’ his mother says, recalling an afternoon she searched for him for hours before finding him in a farmer’s stock tank, sailing a wooden raft he’d hammered together from old doors. Each summer. Stephen helped pack the camping trailer with tents and gear for canoeing in the Boundary Waters area near Canada.

Stephen’s large size and quick reflexes made him a good athlete, and he excelled at football, basketball, soccer and T-ball. He didn’t like schoolwork, preferring instead to develop his ear for music.

He began playing the piano at age 2, standing for hours on tiptoe with his arms stretched above his head to reach the keyboard, and at 6 he requested piano lessons. “We never had to push him to practice,” his mother says. By junior high school, he was playing difficult, elegant pieces. He was one of the youngest to make the school symphony, later picking up the trombone and the guitar. “My head was always filled with music,” says Stephen, who composed new pieces in his head during church, drumming the melodies with his fingers on the benches, to his mother’s consternation. Nevertheless, she dreamed of seeing her son play professionally some day. “We had such hopes for him.”

As in most cases of schizophrenia, Stephen’s symptoms emerged gradually in his late teen-age years. No one really knows what causes schizophrenia, although scientists suspect it could be anything from brain damage to viruses or chemical disorders to genetic inheritance. Because Stephen was adopted, he knows little about his genetic history.

As Stephen grew, he isolated himself from his family, playing guitar in his room alone instead of watching television with the family. “We thought it was normal adolescent withdrawal,” his mother says. The summer between his junior and senior years he quit sports after knee surgery. “Once I left football, I slipped into another crowd,” he says. “At first it was drinking, then it was drugs.”

After Stephen’s graduation from high school in 1982. his music degenerated into discordant hammering as his fingers pounded out the chaos in his brain. ’There weren’t any more pretty melodies,” his mother says. Within a year he quit playing the piano completely.

At first the Wards believed there was nothing wrong that counseling wouldn’t fix. They dragged him from one high-priced psychologist to another who said Stephen’s behavior was drug-induced. A court-appointed attorney told them if they would just learn to pray harder for their son, he wouldn’t be possessed of demons.

In late 1982. when Stephen’s drug use spiraled out of control-already he had taken LSD more than a dozen times-his parents sent him to a 35-day drug rehabilitation center in Oklahoma. “The first time I remember hearing the voices I was 19 and I’d just finished the drug rehab.” says Stephen, lighting a cigarette. One day, while visiting friends, Stephen took LSD, the first hit since he had left the rehab. “I was lying on the bed listening to a Yes album and the voices came flying out of my head, swirling around me. They were deep, powerful voices, the kind you associate with God.”

At first, Stephen kepi the voices to himself. ’They were like my private religious beliefs.” But because they were so persistent and loud, he thought everyone could hear them. Finally, Stephen told his parents. The Wards were convinced the voices were drug-induced hallucinations.

For Stephen, marijuana and LSD were a way of coping with stress. When the voices began, he turned to cocaine as a way of tuning out the constant chatter. As many as one-half of schizophrenics are drug abusers, according to the National Institute of Mental Health. Doctors believe drugs like LSD can trigger the onset of schizophrenia, but they don’t know if the symptoms might emerge later anyway.

“This seems crazy now,” Stephen says, grinning. “I used to think that when Jesus was in heaven, he had his soul cut out. This character-his soul-was called ’Baby Jesus’ and he’d il y around throwing people in hell, taking over heaven and generally causing havoc.” The voices-sometimes women’s and sometimes men’s- spoke two or three at a time. They reminded him over and over that he had been chosen to prepare the world for the second coming of Christ. Often the voices were destructive and abusive, commanding him to jump out of a moving car or to throw himself over a balcony. “I considered doing those things, but I was too scared to,” Stephen says.



DESPITE THE CHAOS, STEPHEN EN-rolled in junior college twice, each time dropping out because he couldn’t concentrate: An invisible force was crushing his legs; horns honking or a cigarette fizzling in an ashtray were signs from God that had to be acknowledged. He abandoned the idea of school and signed up with a series of temporary agencies doing warehouse work. Nothing lasted more than a day or two.

Stephen completely isolated himself from his family and friends, staying in his room for days. When he did emerge, he was hostile and abusive, especially toward his mother. “We had been so close, we’d never even had a spat before,” says his mother. ’The anger was constant. I couldn’t call him to dinner without him attacking ne [verbally].” For years his mother blamed herself for Stephen’s odd behavior. ’It made me ask what should I have done or what didn’t I do to make Stephen this way?”

Stephen’s parents had already gone into debt paying for psychologists. Because Stephen was over 18 and not in college, he wasn’t covered under the family’s health plan. Eventually the money for private treatment ran out and their only alternative was to have him committed to a state hospital,

After several attempts, Stephen eventually was committed to Wichita Falls State Hospital on his 20th birthday. It was the first of five commitments-he ran away four times. The various anti-psychotic medications Stephen received during his commitments-Haldol, Prolixin, Thorazine and Loxitane-sedated him but did little to Halt the hallucinations and the rages they induced. Stephen paced up and down the halls constantly. “That’s all I did in between breakfast, lunch and dinner.” Although pis parents knew he was taking certain medications, they did not know die drugs were commonly used to treat schizophrenia. Confidentiality laws prevented doctors from telling his parents what Stephen’s diagnosis was, or even if there was one.

Stephen hated the way the medications made him feel, so he learned to hide the pills under his tongue and spit them out later. “I nan away every chance I could get,” he gays. Because his commitments were temporary, he was discharged after 60 or 90 days. “We were always in the process of having him re-evaluated for commitment,’ * his father says.

In between hospitalizations, his parents took him to the Denton County Mental Health and Mental Retardation center for evaluation and medication. In 1985, when Stephen was 23 years old, a doctor there told his parents he suspected Stephen was schizophrenic. “I told the doctor to give him the medicine for schizophrenia,” his mother says. “We were naive in thinking he could be treated like you treat someone with heart disease.” Over the months, doctors tried different combinations and doses of many of the same medications he had been) given in the state hospital, but Stephen did not improve.

Brenda Shuttlesworth, director of community support programming for Denton MHMR and Stephen’s former caseworker, continued to hold out hope for him. She drove the Wards to different MHMR facilities in East Texas where Stephen would be able to receive constant care. But he refused to cooperate. “I like to believe there is always hope for anyone who is mentally ill,” says Shuttlesworth, but everyone, including Stephen’s parents, knew that there was little else anyone could do.

Just when the Wards had almost given up, Stephen’s father got a new job that provided some health insurance for Stephen for the first time since his illness began. “I said. Let’s start over again and see how we can help Stephen with this money,” his father recalls. Their windfall allowed Stephen to go to a private psychiatrist. Dr. Agnes Whitley, who practiced out of Presbyterian Hospital.

“He was totally psychotic when I first saw him,” says Whitley, who has been Stephen’s doctor since early 1989. “It was to the point that you couldn’t have a conversation with him.”

Shortly after her first conversation with Stephen, she hospitalized him at Presbyterian and prescribed different combinations of drugs to stabilize him. Soon, he was able to move into Herrin House, a halfway house for the mentally ill in East Dallas where he learned basic grooming skills, shopped for groceries, cooked meals and shared household chores with other residents. He got a job at a submarine sandwich shop. For the first time in a long while, the Wards were optimistic about their son’s recovery.

But after a month on the job, the voices overwhelmed him and Stephen bolted from the kitchen during his lunch break and drove to his old drug rehab in Oklahoma. “I thought the chaplain there could tell me what the voices meant,” says Stephen.

Usually at this point, when all else had failed, Whitley says she would tell families about Clozapine. “1 would tell them if they could afford it, they could go to Europe to get it,” Whitley recalls. But shortly before Stephen ran away, she read in a medical journal that the FDA was conducting test trials of Clozapine with Dr. James L. Claghorn, an eminent psychiatrist in Houston.

Clozapine’s use in the United States was halted 30 years ago after several deaths in Finland were linked to a side effect that causes white blood cells to drop. Countries in Europe and Asia continued to experiment with the drug and monitor patients for the blood disorder with remarkable results. Altshuler says American doctors heard stories for years about patients who were having a Rip Van Winkle effect- patients who would gradually “wake up” after decades of schizophrenia and begin to lead normal lives again. After pressure from doctors and families of schizophrenics, the FDA agreed to begin retesting the drug. “Dr. Whitley called us and said to call and get Stephen an interview as soon as possible,” his father recalls. In August 1989, father and son drove to Houston. Because Stephen had a lengthy record of failure with other medications, he was accepted right away.

As stipulated by the drug trials. Stephen was removed from all other medications and begun on a low dose of 25 milligrams of Clozapine per week. Stephen and his father drove to Houston each week for a new dose of Clozapine and to have Stephen’s blood tested. “We were so hopeful,” his father says. “We had read a little about Clozapine, and we had heard what it could do.”

But, like many of the 120 schizophrenics who were participating in me Houston trials, Stephen did poorly at first. Because he had been removed from all his other medications, the hallucinations worsened and his speech rambled and slurred. “My brain felt cold,” Stephen remembers. Remembering the side effects he experienced with other drugs, Stephen refused to continue the medication. After only five weeks on Clozapine, he dropped out of the testing program. “Our hopes were dashed.” his father says.

But Whitley believed Stephen still had a chance to do well on the drug if the doses of his other medications were lowered gradually. In January 1990, Whitley rehos-pitalized him and put him back on his other medications. Meanwhile, Whitley searched for a doctor with FDA approval who could dispense Clozapine to Stephen in Dallas and found a psychiatrist at Terrell State Hospital who had permission to dispense Clozapine. But efforts to temporarily bring him to Presbyterian failed.

Meanwhile, his parents waited anxiously for the FDA to make Clozapine generally available. “We had heard rumors that the FDA was going to release Clozapine soon, but no one really knew when,” his father says.

There were other patients in Dallas who desperately needed the drug, says Whitley. “I had about 25 patients that probably would not survive without Clozapine.”

Stephen was still in Presbyterian Hospital when the FDA unceremoniously released Clozapine on February 4, 1990. It was a joyous day for his family. “We realized there might be some hope for Stephen after all,” his mother says. Whitley gradually lowered his other medications while the doses of Clozapine were slowly increased. Stephen improved so much the First week that he was sent home.

“There were no bolts from the blue-it was little things at first,” his mother recalls. “One morning he got up and brushed his teeth for the First time without anybody telling him to. A few days later, he got up and brushed both his teeth and his hair.” Soon, Stephen noticed his hair was dirty and washed it without being told, she says. And, for the first time since he was a child, Stephen wanted to get up in the mornings.

“For the first six months or so there was something new every day that he did that he hadn’t been able to do before,” his father recalls. Stephen didn’t notice the changes when they were happening. “I don’t remember getting better, but I can see how I am now and I realize I was sick then,” he says.

For Whitley, it was like meeting Stephen for the first time. “I remember it wasn’t too long after he began taking Clozeril, maybe a few weeks, and he walked in the office and said ’Hi, how are you?’ Before, he couldn’t have shown that kind of interest in anyone else. He had never greeted me before like that. And I remember the emotion coming back on his face. His eyes sparkled.”

Within a month of taking Clozapine, the voices that Stephen believed were so real had almost completely ceased. By the fourth month, Stephen had improved so dramatically that Whitley helped arrange for him to move into a quiet, one-bedroom apartment subsidized by the Texas Housing Authority.

“One of the first things that I remember Stephen saying to me after being on Clozapine for a few months was. ’Dad, I need a job,1 ” his father says, his voice filled with emotion. “1 had waited eight years to hear that.”

But finding a job wasn’t easy. Stephen didn’t have much of a work history or marketable skills. With his father’s encouragement, he wrote a letter to the Texas Rehabilitation Commission, a state agency that provides vocational rehabilitation for individuals with disabilities. When no response came, his father called the TRCs commissioner, and soon after Stephen was enrolled in TRC classes for résumé writing and interviewing skills. He renewed his driver’s license, started up the Tercel he had driven in high school, and drove himself to daily classes. At class, he noticed a bulletin board advertising work at a large North Dallas hotel. “I always thought hotel work would be interesting,” he says. The TRC representative arranged an interview and went with him. “I wasn’t nervous because I’d never really held a job before. But I remembered the month I worked in the sub shop and how good it felt to be working.”

After the interview, the TRC representative told Stephen he didn’t do well. “He said I asked too many questions,” Stephen says, laughing. He got the job anyway, setting up convention rooms. Stephen’s supervisor worked with him for months, patiently teaching him how to fold down table legs and to roll the heavy carts loaded with chairs and tables. He has held the job for over two years and was recently promoted to shift supervisor. Although his boss knows about the schizophrenia, his co-workers do not. “As long as I take my medicine I’m no different than anybody else,” Stephen says.

He pays his own bills, shops for groceries and cooks his own meals. But his parents are most grateful that Stephen’s personality has returned. “His sense of humor came back,” his mother says, looking at Stephen and winking. “He used to have this dry wit that completely disappeared when he got sick.” Stephen laughs when he hears this. “I never knew I lost my sense of humor. But if they say so, it must be so.”

The first Christmas after Stephen had been on Clozapine, 10 months into his treatment, he called his mother and asked her to go shopping with him. “That was the first time in his life he had ever shown any interest in buying Christmas presents. Even when he was a child, I had to buy them for him.” They met for lunch at Stephen’s favorite restaurant, Pancho’s, before heading out to the mall. Before Clozapine, Stephen would not have been able to handle the stress of being around a mall full of people. Now he was armed with a list and ideas. “It was the best Christmas present he ever gave me,” says his mother.

Last summer, Stephen did two other things he had never done before. He took a weeklong vacation, riding Amtrak alone to Chicago to visit relatives. And, he gave a talk about Clozapine to about 50 people at a meeting of the Denton County Alliance for the Mentally Til. Brenda Shuttlesworth, Stephen’s former MHMR case manager, saw him for the first time since he had been taking Clozapine and didn’t recognize him. The medication had put about 80 pounds on his body, but it was his face that startled her. *’It was full of expression. He was laughing and telling jokes, talking about his job,” she says. He spotted her across the room and walked up and hugged her. “I was shocked. He was just like anyone else. Not many things can move me to tears, but this did.”



EACH YEAR 70,000 PEOPLE IN TEXAS are diagnosed with schizophrenia, so the success of the drug manufactured by Sandoz Pharmaceutical Corp. is significant. Clozapine has been a miracle for Stephen, but many who could benefit from it cannot get it because of the cost.

If you have the money-many insurance companies won’t cover it-Clozapine is now relatively easy to get, If you’re poor, there are lots of rules-because there isn’t enough money to go around. You have to have failed on at least two other medications before the state will consider paying for it. In many cases, by the time a schizophrenic is diagnosed, families have little money left. ’There are literally hundreds of thousands who deserve a trial of Clozapine, and they’re not getting it,” says Reid. “Most of them are in the public sector. This is a real kind of breakthrough drug that should be available to those who need it.”

Agnes Whitley says families of only five of the 25 patients under her care who desperately needed Clozapine managed to scrape together the money to pay for it, and a few patients who qualified for Medicaid were able to get it through the MHMR system. She says the families of a handful of patients, who could not get Clozapine any other way, brought the drug back illegally from Canada and England, where the drug is significantly cheaper, partly because costly blood monitoring is not required.

As of the first of the year, only 961 people were able to get Clozapine in Texas- 36 in Dallas County-through state and county hospitals and community MHMR clinics. That hardly makes a dent in the problem as the MHMR estimates at least 28,000 people in the state need to be taking the medication.

Reid says the agency had planned on providing Clozapine to an additional 619 people next year, but as of late January, the Texas legislature threatened to slash the MHMR budget so severely that Reid thinks it may be two or three years before there will be any new money to spend on Clozapine.

People who are already taking Clozapine through the MHMR system will continue to receive in says Reid. “We will not leave them stranded. We have a policy that once we put someone on Clozapine, we won’t take them off it for financial reasons.”

Reid, who holds an honorary seat on the advisory board of Sandoz Pharmaceutical Corp., says he has tried to persuade Sandoz to lower its post. “Personally, I really want them to lower the price. They’d make up for the lower cost in volume, but they’ve already made their decision. There is no more disdussion.” Bill O’Donnell, spokesman tor Sandoz, says the company has no immediate plans to lower the cost of Clozapine in the U.S.

In die meantime, Reid says families will continue to sell their life insurance policies and mortgage their homes to pay for a year or two of (clozapine. “What happens to these people when the money runs out?” Reid asks with evident frustration.

Reid says the cost, plus the fear that patients may die from the blood disorder, keeps many physicians from prescribing Clozapine. [That fear is unfounded, says Reid. Only seven of the 40,000 people in the U.S. who have taken it have died from the disorder. “Far more patients would have died from suicide, homelessness, or other physical illness associated with schizophrenia,” says Reid. ’There is a far higher rate of mortality for patients who don’t have Clozapine.”

Because of potential complications and the need for regular monitoring, many patients in North Texas are sent by their private doctors to the Sprague Clinic at the University of Texas Southwestern Medical Center. The clinic dispenses the drug and takes weekly blood samples for about 43 patients, including Stephen. He takes 150 milligrams of Clozapine now, mixed with a small dose of Stelazine. As with most Clozapine patients, Stephen will have his dosage levels monitored and adjusted for his life. Because Clozapine sleepy, Stephen takes it just before bed. After two years on the medica-ness is the only side effect experienced. With other medications for schizophrenia, compliance is a major problem. “Because it just doesn’t make you eel bad like other anti-psy-chotics, once patients start taking it, they feel so much better they usually keep taking it,” says Whitley.

But Step! en may have less than a year to enjoy the luxury of a normal life. When Sandoz’s patent on Clozapine ends in 1994, so too may Stephen’s ability to get the drug. Sandoz has been providing Stephen, and others who participated in their clinical trials of Clozapine, with free prescriptions of the medication under a “compassionate need” program. The Wards expected the program to provide medication free for the rest of their son’s life. But last summer, doctors and families learned that the drug company had changed its mind. ’They reneged on their promise is what happened,” declares Stephen’s father.

But Sandoz spokesman Bill O’Donnell says the company is only asking patients to look to other ways of paying for the medication and that once the patent on Clozapine is up, less expensive generic forms of the drug should (or may) be available. Just who gets to stay in the program depends on how expensive the generic drugs are and if die patients can pay for it with private health insurance or Medicaid.

Stephen isn’t certain yet if the health insurance he receives through work will cover Clozapine. His parents say they have no money to pay for it. “If [my husband] and I both have to get second jobs to keep him on it, we will.” his mother says.

Bill Reid says it may be two or three years before generics or drugs similar to Clozapine are available to the public. O’Donnell says families like the Wards shouldn’t worry. “Sandoz doesn’t want to leave anyone without medication. IT I could personally talk to those families and assure them that their children won’t be without Clozapine, I would. I can’t conceive of a situation where a patient couldn’t get some form of Clozapine. But we can’t guarantee a blank check.”

Meanwhile, Stephen tries not to think about what will happen if he can no longer get the medication he needs to stay sane.

On a rainy Thursday evening after eating dinner at a neighborhood Chinese restaurant, Stephen unlocks the door to his apartment. “Sorry about the mess.” His apartment is sparsely furnished, with clothes strewn on the couch and dishes left in the sink. A solitary lamp lights the room, and the television flickers silently, “for company.”

Stephen stretches out on the sofa next to stacks of record albums collected from his teen-age years and strums chords on his guitar, his fingers straining to recall the music that once came so easily. The voices have been completely gone for over a year now, and for the first time in a long time, the music has returned.

TAKING THE CURE

It’s 9:30 a.m. in the carpeted, pastel-hued offices of the Sprague Clinic, an out-patient facility on the fourth floor of the University of Texas Southwestern Medical Center complex. Catherine Judd, the clinic’s coordinator, walks briskly from office to office, ushering patients into a room for one of two weekly group therapy sessions, each of which is mulched to participants’ needs. A young woman with big blue eyes pauses for a moment at the door and asks another woman, “Do you hear voices, too? That” s why I’m here.” Judd gently prods her to keep moving. Two psychiatrists from the University of Texas Southwestern Medical School, which staffs the clinic, enter and close the door. Most of these 25 or so patients have been taking Clozapine for several months, but some, like the young woman, have been taking it for almost a year with modest results.

Regular therapy is crucial if patients are ever to re-enter society successfully. “For mam of these people, this is the only interpersonal contact they have,’” says Judd. “It’s very hard to develop a social life again. They want to date, to make friends outside the group, but they’re afraid to.” Judd says the country’s medical community has been overwhelmed by the thousands of people who. once sentenced to miserable lives in stale hospitals, are now well enough to begin living productively on their own. “There really aren’t facilities set up for these people to help them make the transition.” she says. “That’s why we started these therapy sessions. It’s .1 start at least.”

Judd bustles through the waiting room, rides a back elevator down a floor and almost sprints through a series of corridors and swinging doors leading to the UT Southwestern Medical School. The medical school, nearby Parkland Memorial Hospital. Children’s Medical Center. Zale Lipshy University Hospital and the Aston outpatient clinics are all arms of training and service for the Sprague Clinic- Judd raps on the office door of her boss. Kennel h Altshuler, chairman of the UT Southwestern Department of Psychiatry. “We had the resources to put together a clinic for Clozapine, and we were able to do it quickly.” sa\ s Altshuler. “Our success ranges from modest to close to perfect.” The clinic started dispensing Clozapine two years ago ami went from one patient to the current number of 43. Out of that number, three have improved so dramatically that they have been able to return to college. Five have returned to work. “For people who ask why the number isn’t bigger, we remind them these were people who would have lived out their lives in stale hospitals.” Altshuler says.

Curiously, almost all of the patients are males, he says, even though schizophrenia afflicts men and women equally. All of the patients are in their 20s and many of them were once highly motivated: a former electrical engineer, a student from an Ivy League college, a National Merit Scholar. And they come to the clinic from all over North Texas. “Some patients come to us from their own doctors, and we stabilize them on Clozapine and monitor their blood. Eventually many of them go back to their own doctors.” says Judd. Others, like Stephen Ward, come to the clinic to pick up their prescriptions once a week and to have their blood monitored.

Judd remembers their first patient, a young man referred to her by the Dallas Alliance for the Mentally III. who arrived just hours after the FDA released Clozapine to the public. “The family had gone through a million dollars in health insurance and he was only IX.” recalls Judd. He had already taken dozens of medications and nothing helped. After a year on Clozapine, the man is now living in a halfway house and working. “This is a family who was told (heir son would never live outside a hospital.” -R.S.