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A Man On A Mission: Give A True Count Of The Toll Of Mental Illness

A mentally ill patient in Afghanistan at the Mia Ali Baba holy shrine in the village of Samar Khel. The mentally ill are thought to be possessed by demons and so are chained for 40 days.
Noorullah Shirzada
AFP/Getty Images
A mentally ill patient in Afghanistan at the Mia Ali Baba holy shrine in the village of Samar Khel. The mentally ill are thought to be possessed by demons and so are chained for 40 days.

0.4 percent.

That's the proportion of global development assistance that goes to mental illness prevention, care and treatment, according to Daniel Vigo. It's $1.5 billion of the $372 billion total health assistance spending around the world over the last 15 years.

Vigo, a psychologist and psychiatrist at Harvard, believes that more money is needed. And he also believes that one reason the percentage is so low is that the world doesn't do a good job of assessing the number of people who suffer from mental illness and the disability and the premature death that result.

Those lost years — years when a person can't work, can't take part in family life — and those earlier-than-expected deaths are what's called the "global burden of mental illness."

Vigo, along with Rifat Atun, also of Harvard, and Graham Thornicroft of King's College in London, co-authored an eye-opening analysis published this month in the journal Lancet Psychiatry. They reinterpreted the data about illnesses and deaths collected over the last two decades as part of something called the Global Burden of Disease Study. And they've concluded that the number of people affected by mental illness is greater than has been thought.

A spokesperson for that study says it's fine to look at different ways to interpret the data — that the numbers are there to work with.

We asked Vigo why he and his colleagues took on the task, and what they hope will result from their reanalysis.

Why did you do this study?

Vigo says it's because previous analyses defined mental illnesses very narrowly. He and his colleagues believe that the narrow definition led to an undercount of the true burden. "When you have a burden that is undercounted, the result is you have less attention, you have less money and you have worse service," he says.

He's seen the results of inadequate or absent service firsthand, caring for patients in Latin America and Southeast Asia as well as the U.S. That's left him with memories of people such as a 16-year-old girl in Buenos Aires who had been locked up nearly two years, "away from family, friends and school, because she kept injuring herself."

How did you do the recount?

The benchmark numbers come from the Global Burden of Disease Study, a monumental piece of work involving more than 500 researchers in 50 countries who periodically collect data about illness and deaths all over the world. Vigo and his colleagues used the raw data from the study but categorized the numbers differently.

"For example, at the global level, suicides were counted as injuries, and they sat there along with traffic accidents," he says. But because the vast majority of suicides result from depression, Vigo and his colleagues counted suicide and self-harm in the mental illness column, not in the accidents column.

And they added 30 percent of the burden of chronic pain syndromes, because conditions like fibromyalgia, low back pain and other problems with no outward physical injuries are frequently a component of mental disorders, not of musculoskeletal illness. They also included some neurologic conditions such as dementias, migraines and epilepsy.

Was there any pushback for including dementias, migraines and epilepsy in the category of mental illness? Have others disagreed with this?

"We expect it to be an ongoing debate and an ongoing challenge," Vigo says. "People would rather be considered as having any other kind of illness then mental illness; that's completely understandable." Nonetheless, he feels that the impact of these conditions can lead to mental health issues.

"We are guided by where the burden presents itself both from a clinical and service delivery perspective," he says. The pain and emotional distress of dementia, for example, can affect one's ability to interact with others and to feel mentally stable and healthy.

So what were your final estimates of the global burden of mental illnesses?

In the traditional way of counting, the years that people around the world live with pain and suffering from mental illnesses account for 21 percent of global disabilities. "With our assumptions, the actual result is that 32 percent of global disability is a direct result of mental illnesses," Vigo says. Another way to think about it is this: The original analysis blames a fifth of all disability on mental illnesses. The new analysis blames nearly a third of disability on mental illnesses.

"All these people can literally find a different life with proper care," Vigo says.

Do you think you got a full count of the burden of mental illness?

No doubt here. The answer is no, says Vigo, for several reasons.

"There wasn't enough information on disabilities resulting from personality disorders such as borderline or paranoid personality disorder," he says. "Personality disorders are dramatically understudied despite being amongst the most frequent mental disorders."

And they were unable to count "indirect deaths." Take schizophrenia. People with schizophrenia die 15 to 30 years younger than the average life span for their country. Tobacco use causes some of those deaths: Smoking is common among people with schizophrenia, who may be trying to self-medicate with nicotine, and people with schizophrenia seldom get medical advice and treatment for tobacco addiction.

And without very careful attention, people with schizophrenia can suffer from the drugs they take. "Medications for schizophrenia can cause metabolic syndrome," Vigo says. Metabolic syndrome is a collection of symptoms, such as obesity and cholesterol abnormalities, that make people prone to heart disease.

The death of a 45-year-old man with schizophrenia is counted as a heart disease death. "But the whole process that led to that death is not actually cardiovascular disease," says Vigo. "It's schizophrenia."

Then there are difficult-to-measure indirect effects. "An untreated depressed mother might find it impossible to provide the necessary care for her children," he says. "I have seen families break down and go broke under the pressure of dealing with a mentally ill child, husband, or mother, in the absence of proper services."

Such economic and social hardship is not counted in the burden of disease measurements and rarely if ever shows up in national health budgets, says Vigo.

What's your prescription for dealing with the increased burden that you found?

"For a minority of severely affected patients — maybe a couple of percentage points — that will mean assisted living or intensive case management," says Vigo. "But in the vast majority of cases it will be simple measures given in primary care" — talk therapy, drugs.

Primary care clinics already see people with symptoms of mental illness. "Many diseases are associated with mental illnesses — depression often accompanies or follows cardiovascular disease, or pregnancy, or HIV, for example," he says. The movement he is calling for is already beginning to take hold in the U.S. — treating mental illnesses at the primary care level by having mental health workers on site or training primary care workers to diagnose and treat the simpler cases.

Vigo is currently working on a project for the World Health Organization and the World Bank to design and set up programs in low- and middle-income countries where people could get group or individual therapy, or drugs when needed.

Why are your findings important?

Vigo's bottom line is that the 0.4 percent of health aid dollars that go to helping countries deal with mental illnesses is not enough. "You cannot deal with 30 percent of the disability and 13 percent of the disability plus death with only 0.4 percent of the funds."

It will take some time to see whether the new analysis by Vigo and his colleagues takes hold in the global development world. With or without it, the topic of mental illness has been gaining momentum, and in April the World Health Organization and the World Bank will be hosting a high-level meeting on how to provide mental health services around the world.

Copyright 2021 NPR. To see more, visit https://www.npr.org.

Joanne Silberner is a health policy correspondent for National Public Radio. She covers medicine, health reform, and changes in the health care marketplace.
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