In Diabetes, One More Burden for the Mentally Ill
N. R. Kleinfield
New York Times
June 12, 2006

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In Diabetes, One More Burden for the Mentally Ill, N. R. Kleinfield, New York Times, June 12, 2006 AD

Robin Stigliano, a diabetic who lives at the Bayview Manor adult home in Brooklyn, takes drugs for schizophrenia. Her weight has soared to 241 pounds from 150.

Dr. John Newcomer is a psychiatrist who generally treats people with severe ailments of the mind and spirit. But before his patients sit down, before he hears about their clammy paranoia or renegade voices, Dr. Newcomer wants to know about their waist size.

He steers them to a scale to learn their weight. He orders a blood sugar test. If big numbers come up, he begins a conversation about Type 2 diabetes, a disease associated with obesity that is appearing with alarming frequency among the mentally ill.

"Uncontrolled diabetes can ruin a person's life as much as uncontrolled schizophrenia," said Dr. Newcomer, a professor of psychiatry at Washington University School of Medicine in St. Louis.

In fact, among the mentally ill, roughly one in every five appear to develop diabetes — about double the rate of the general population. This is a little-recognized surge, but one that is jolting mental health professionals into rethinking how they care for an often neglected population.

For decades, psychiatrists have worried primarily about patients' mental states, making sure they did no harm to themselves or others because of unrelenting voices or a smothering depression.

Far more of the mentally ill, however, die today from diabetes and complications like heart disease than from suicide. Given that mental health specialists are often the only doctors a mentally ill diabetic ever sees, some have begun to debate the customary limits of psychiatric practice, deciding to pay much more attention to physical ailments.

In particular, psychiatrists must confront the fact that diabetes, marked by dangerously high blood sugar, is often aggravated, if not precipitated, by some of the very medicines they prescribe: antipsychotic pills that have been linked to swift weight gain and the illness [diabetes] itself.

"It's bad enough that these people have mental illness, and then they take treatments [drugs] and they bring on diabetes," said Dr. Jeffrey Lieberman, chairman of the psychiatry department at the Columbia University College of Physicians and Surgeons.

Treating the diabetic mentally ill can be formidable. The regimen of blood testing, dieting and exercise that controls Type 2 diabetes is often beyond the attentions of the mentally ill. For patients, the task of taming two debilitating illnesses can haunt their lives. Michael Schiraldi, 44, a Manhattan man who has both schizoaffective disease and diabetes, said his mental illness, now stabilized, was the lesser of his concerns.

"I can't really control the diabetes," he said. "I might die from it."

The doctors who regard diabetes as a galloping threat to the mentally ill acknowledge that many in their profession still dispute, or ignore, its consequences. Dr. Newcomer said colleagues often whine about how hard it is to weigh patients. " 'Oh', they'll say, 'there's no scale' or 'It's in a closet someplace,' " he said.

Yet he says he hopes other doctors will eventually share his perspective as diabetes expands among the mentally ill and deepens into an even graver problem.

Betrayals of Body and Mind

Carole Ernst doesn't know how she got diabetes.

Genes? Her mother had it.

Lifestyle? She eats more than she should, exercises less than advisable.

Or was it the pills that shushed the TV?

The TV no longer speaks to her. She stared levelly at the set in her messy room. It was blessedly quiet.

She is 53 and has battled mental illness since childhood. The pills for her illness, diagnosed as schizoaffective disorder, have helped. But she feels they have also made her fat around her abdomen, the kind of fat that can lead to diabetes.

So even though Ms. Ernst feels better mentally — she no longer imagines everyone despises her — diabetes has been a crippling insult to her troubled psyche. In the late hours, alone in her room on the Lower East Side of Manhattan, trapped in the undertow of two potent diseases, she runs on empty.

"Some nights, the only thing I can do is read my Bible," she said. "I look in there to find answers. They're hard to find."

Diabetes on top of mental illness asks a lot of a person, and of society. Mental illness is itself a money sponge, an expense borne largely by tax dollars. But that cost may be dwarfed by the bill to manage the heart attacks and amputations that diabetes bestows.

With numerous mental institutions emptied, patients often live in lightly supervised settings. Many occupy adult homes that struggle, for good reasons and bad, at providing basic services and are poorly equipped to treat diabetes. Others live on their own, sometimes in boxes beneath bridges or crumpled in doorways.

Imagine taking on diabetes if you live alone and find living itself to be a handful.

"I try not to drink sugared sodas, but sometimes I forget," Ms. Ernst said. "I'll buy candy — Mary Janes or banana cookies. I know I'm not fooling anybody — it's my arms and legs they're going to cut off — but sometimes I get the craving for something sweet."

She sat at a round table in her room, a cool evening of early spring, cradling a stuffed bunny. She flicked a small smile. "I'm sorry it's not neater," she said, looking around. "I'm trying."

Ms. Ernst embodies the difficulty of confronting the two diseases with all their complexities. She takes clozapine for her mind because she can't manage without it. She has diabetes and can't defeat her weight.

"Disgusting, that clozapine," she said. "Makes you eat everything under the sun." She takes a lineup of other drugs, too, not all positive for her weight. She had hit 250, fought her way to 198, and is now at 221.

She lives at Gouverneur Court, a residence run by a nonprofit organization, where about 15 of the 66 mentally ill residents have diabetes. "Some say they don't have it, but they do," said Abby Stuthers, the nurse who works there. "Or they say they have a little diabetes."

Ms. Ernst freely recounts her callused life. Her marriage exploded. Once she was smacked in the face with a glass ashtray. She opened her mouth — every tooth was missing.

Now diabetes. Her blood sugar has been O.K., but her vision has worsened. And she is inconsistent, prey to the fury of her demons.

Susanne Rendeiro, a family nurse practitioner who serves as her primary care physician, said Ms. Ernst misses half her appointments. Recently, in reviewing her drugs, Ms. Rendeiro asked about her blood pressure pills. Puzzled, Ms. Ernst said she was not on blood pressure pills.

Mrs. Rendeiro said she had supposedly been taking them for two years.

"I want to be the best I can be," Ms. Ernst said. "Nobody changes overnight."

Treatment and Cruel Ironies

There was always a lot else wrong with the mentally ill — heart problems and cancer and H.I.V., as well as diabetes. But for psychiatrists and clinicians it was enough to worry about mental needs that beggared the imagination.

The spread of diabetes, however, is making the physical conditions impossible to ignore. "Psychiatrists are literally watching patients balloon up before their eyes," said Dr. Gail Daumit, an assistant professor of medicine at Johns Hopkins Medical Institutions.

This has been especially true since the advent of so-called atypical antipsychotic drugs in the early 1990's. Studies indicate that these drugs can alter glucose metabolism and stimulate weight gain, particularly in people predisposed to diabetes.

"Sort of a cruel irony in this," said Dr. Lieberman of Columbia, "is that all of the drugs do it to some degree, but the ones that have the most effect cause the most weight gain and metabolic side effects. There's increasing discomfort that these are driving up deaths and lowering quality of life."

Some cases have been striking: a patient packing on 50 pounds in mere months, for example. Diabetes arrived as quickly, and sometimes subsided if the drugs were halted. In certain instances, there was no weight gain, but still diabetes came, often in patients who were already heavy. Studies have indicated that dozens of these patients died from diabetes-related complications.

The Food and Drug Administration requires atypical antipsychotics to bear warning labels about diabetes risk, though drug makers say patients taking them who develop diabetes were destined to get it anyway.

Robin Stigliano's psychiatrist has her taking Haldol by injection as well as one of the drugs most closely associated with weight gain, Zyprexa. They have helped her schizophrenia, but Ms. Stigliano, 37, who lives in a Brooklyn adult home, has seen her weight soar to 241 pounds from 150. And when she gets her Haldol infusion every three weeks, all she wants to do is sleep. "It's my favorite activity," she said.

Without the drugs, psychiatrists believe, many high-functioning patients would find themselves in institutions or jail. "These drugs are enormously beneficial," said Dr. P. Murali Doraiswamy, head of biological psychiatry at Duke University. "But they have an Achilles heel."

A few years ago, Dr. Doraiswamy reported a case of a mentally ill person who got diabetes and was prescribed insulin. The impact of having two serious conditions overwhelmed him. He wound up trying to kill himself by insulin overdose.

Some researchers think it is possible the rash of diabetes stems in part from mental illness itself. Studies associate the onset of diabetes with depression. The mentally ill are also at high risk because they tend to eat poorly, get little exercise and have limited access to health care.

In a 2003 survey, the city's health department found that about 17 percent of adults who reported symptoms of a mental illness, or 52,000, have diagnosed diabetes. Elsewhere, rates are as great or greater. Even these estimates may be low, experts said, because the mentally ill see doctors sporadically and their illnesses may be underdiagnosed.

The rates of diabetes and obesity are nudging Dr. Doraiswamy and others in his field — in modest ways thus far — toward prevention, toward screening people for diabetes before choosing drugs and connecting better with primary care doctors.

"This wouldn't be a big problem if most mentally ill patients had a primary care provider, but they don't," said Dr. Newcomer at Washington University. "And it's never been part of the game plan for the psychiatrist to write the prescription for your blood pressure medicine or your diabetes medicine."

He feels change is imperative. "The days when I don't do windows can't go on," he said.

Dr. Kenneth Duckworth, medical director for the National Alliance on Mental Illness, agreed. "I think the field has been passive," he said. "We viewed it that we do symptoms and you run your life."

Stimulating change is not easy. Psychiatrists have a problem simply getting patients to stay on their drugs. Resources are inadequate.

"Psychiatry is historically a couch and the chair," Dr. Duckworth said. "How do you get movement into the equation?"

He said that he weighed his patients, checked sugars. But few psychiatrists are set up to do this. Treating diabetes, they say, was not what they were trained to do. And where, they ask, do they find time in 15-minute appointments?

"Most psychiatrists barely look at their patients," said Dr. Donna Ames Wirshing, a staff psychiatrist at the West Los Angeles Veterans Administration Medical Center. She recently asked 30 how many weighed their patients; 3 hands went up.

Dr. Wirshing and her husband, Dr. William Wirshing, are experimenting with the use of nutrition and exercise coaches for mentally ill patients.

Couches could be replaced with exercise bikes. Or, as Dr. David Hellerstein, associate professor of clinical psychiatry at Columbia's College of Physicians and Surgeons, noted, "Instead of having the patient lie down and you say, 'So tell me why you fight with your brother,' you could say to the patient, 'Let's take a walk around the block while you tell me about why you fight with your brother.' "

For the most part, however, psychiatrists confront the knotty questions without ready answers.

If some 10 percent of schizophrenics kill themselves, and clozapine is the only antipsychotic medication demonstrated to significantly reduce suicide, but it has grave side effects, like its association with diabetes, is it miracle or monster? Or both?

"When I chat with patients, about clozapine, I say, 'This may give you your mind back, but it may hurt your body,' " Dr. Duckworth said. "I think of it as psychiatric chemotherapy. Your hair won't fall out, but you may get diabetes."

How do patients respond? "Some say, 'If this will give me my mind, I'll take anything,' " he said. "Some say, 'There's nothing wrong with me, why are we even having this conversation?' About 60 percent of schizophrenics don't recognize that they have it. There are very few easy answers in my line of work."

Housing the Ill and Diabetic

So the men and women eat, sleep, smoke, watch TV, sleep — then do it all over again. Unsurprisingly, those who live there say, dozens of the 200 residents struggle with diabetes.

These often-troubled homes where so many of the mentally ill are housed, frequently grumbling about inadequate attention to their needs and their dignity, can be hideously difficult places for someone at high risk for diabetes. And that is basically everyone who lives there.

Leslie Hinden, a chatty man of 51, sat listlessly in the lounge, near the junk food dispensers. He'd be buying sweets but was broke from binging.

He has had schizoaffective disease — characterized by symptoms of schizophrenia and depression — for most of his life. Sometimes he hears Indian war whoops in his head. About 17 years ago, he picked up diabetes, too.

His blood sugar was 289 that morning, he said. A normal fasting blood sugar reading is below 126 milligrams per deciliter.

"I cheated," he said. "Last night I ate two eclairs. Had a Coke. A lot of times I don't cheat and it goes up to 300. I don't know what to do."

Why the binge last night?

"I don't know," he said. "I felt scared."

A recent State Department of Health sampling of 19 homes found that nearly a quarter of residents had diabetes. The homes say they do what they can. Some have diabetes sections in the dining halls, where occupants get a sugar-free dessert.

"I'm not a doctor, but we're very helpful," said Mordechai Deutscher, the case manager at Surf Manor, who said he did not think the home had many diabetics. "The people here are doing very well."

Even mental health advocates have not given diabetes much attention. The Commission on Quality of Care and Advocacy for Persons with Disabilities, a state watchdog agency, said it has never examined diabetes prevalence or care.

At Surf Manor, Mr. Hinden, like the other diabetic residents, cannot have a blood sugar meter or give himself insulin. Needles are considered perilous. He depends on the staff. But no one prescribes motivation or understanding. And where diabetes requires vigilant self-management, illnesses like schizophrenia often mean memory problems and lack of drive.

"I'll be honest with you, I don't understand diabetes," Mr. Hinden said. "I don't understand it at all."

Joseph Franklin, 47, sat down, all 300-plus pounds of him. He said he has been taking diabetes drugs for seven years. "It's just in case," he said.

He said he was bipolar: "I couldn't see people with shoes on. If I saw someone with shoes on, it could do something to my forehead."

He spread out some greeting cards he had made. He leaned close. "Listen, I don't want everyone to hear this," he said, "but it's very possible that, unless the doctor made a mistake, I do have diabetes."

A stoic man of great girth named Lee Symons, 57, nodded. He had it, too. He hears guitars and banjos thrumming in his head.

Was he trying to diet?

"No one told me to," he murmured.

What about the diabetes?

"As long as it doesn't hurt, I don't mind it," he said. "It's just diabetes."

Important Note: Never stop taking prescribed drugs of a medical doctor or psychiatrist without first consulting them. Stopping cold turkey might kill you! If you are on Neuroleptic by a judges order, get a job and show you can function on your own and ask for your drugs to be reduced by your doctor. The more you show your psychiatrist you can function independently, responsibly and normally on your own, the less drugs they will prescribe. Its all up to you! The first step is to tell your doctor that the drugs are interfering with your ability to work. Ask your doctor to cut your drug dose down. After six months of working, go in again and ask him to reduce it again. As long as you can function independently, responsibly and normally on your own they will keep reducing the drugs over time at your request. Always work through your doctor. Never make any decisions to make drug or dosing changes without a doctors oversight.

By Steve Rudd: Contact the author for comments, input or corrections.

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