Family and Caregiver Schizophrenia Discussion Forum

WSJ Where Did the Schizophrenics Go - WSJ OP ED

Where Did the Schizophrenics Go?
The number drops to 750,000 from 2.8 million, and spending per patient soars.

By

E. Fuller Torrey and

Wendy Simmons

March 26, 2019 6:56 p.m. ET

Wondrous are the ways of Washington. In a single day, the federal government officially reduced the number of people with schizophrenia in the United States from 2.8 million to 750,000. With a change of the National Institute of Mental Health website in 2017, two million people with schizophrenia simply disappeared.

The 2.8 million estimate, or 1.1% of the adult population, had been the official standard for the U.S. since the 1980s, when the last major prevalence survey was carried out. The figure was provided to Congress in 1993 and used for national estimates such as the cost of schizophrenia.

NIMH Director Joshua Gordon wrote in the Psychiatric Times that “the 1.1% figure is no longer scientifically defensible” in view of “the most recent findings.” These findings come from a 2001-03 National Comorbidity Survey, which included only those who lived at home and acknowledged symptoms of schizophrenia. It excluded those in hospitals, nursing homes, group homes, jails, prisons, homeless shelters and on the streets. Nor did it include the people with schizophrenia among the 29% who refused to participate in the survey.

In short, the 750,000 estimate, 0.3% of the adult population, was an absurd undercount, obvious to anyone with knowledge of the subject.

Why would a federal health agency want to make two million patients disappear? Welcome to Washington. Administrators spend a lot of time trying to make their agencies look good to the public and especially to Congress, which controls the purse strings. In 2006 Congress ordered the National Institutes of Health to make public how much they spend on each major disease. These figures, along with the number of people affected by each disease, allow anyone to determine quickly the NIH’s research expenditure per patient with schizophrenia, autism or any other disease, and compare them. It can be argued that the quality of the research portfolio is a better metric than expenditure per patient, but the latter is what most advocacy groups use.

In 2016 NIMH spent $254 million on schizophrenia research. With 2.8 million people affected, that was only $90.71 a patient. NIH expenditures for Alzheimer’s disease were $162.98 a patient ($929 million for 5.7 million people) and Parkinson’s disease commanded $173.12 a patient ($161 million for 930,000 patients as of 2020).

This imbalance created a problem for the NIMH. There were two ways to “solve” it: by spending more money on schizophrenia research or by reducing the number of people with schizophrenia.

Thus two million people with schizophrenia disappeared from the figures and voilà—expenditure per patient soared. Even though schizophrenia research funding fell in 2017 to $243 million, the NIMH can now claim to spend a mouth-dropping $324 per person. Call it a Washington victory for schizophrenia patients.

Dr. Torrey is associate director for research and Ms. Simmons is a research associate at the Stanley Medical Research Institute.

This would be an incomplete sample then… this is often an issue with the survey method… or was is sample bias?

We can always “count” on E Fuller Torrey to get directly to the point.

Thank you for posting!

I can’t press like because I hate what our society is doing to people with these illnesses.

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Thank you, firemonkey!

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The Reagan administration greatly diminished or eliminated funding for Federal mental institutions during his reign. There is no adequate, safe, well supervised place for the chronically mentally ill except in the homes of their families, usually mom’s. Hence, this wonderful website! Thank God for it!

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Canada is unfortunately not much better. I live in Toronto. There’s a lot of talk about funding and initiatives for Mental Health & Addiction, however, in practice it is very difficult to get help.

You cannot get help for a loved one, unless:

  1. they voluntarily want help (difficult when up to 80% of people living with schizophrenia suffer from anosognosia and are unaware of their mental illness)
  2. they are a danger to themselves (suicidal), or to others (attacking).

The result of this legislation, is that people living with schizophrenia are often at risk of losing everything they hold dear, while their caregivers feel hopeless and overwhelmed.

What we need to demand from our politicians is funding for a lot more supportive housing.

I’m imagining a hotel type situation, where there are suites with a sleeping and seating area, and a private bath — but the dining areas are communal and nutritious meals can be served, and the building is staffed 24/7 with social workers and nursing staff and custodians that can provide services such as: Counselling and Medication supervision, and housekeeping. Also common areas with rooms dedicated to hobbies and interests, for stimulation, and rooms for entertaining family member visits. An environment that feels like home, not a hospital.

Rather than involving Police, and spending 8 hours at Emergency at a hospital, and then the 72 hr observation period and possibly a 2-3 weeks stay in the Psychiatric Ward, we could avoid all the drama & trauma that that entails, at great expense to society.

Everyone who is living with Schizophrenia should have a Social Worker, supervised by a Psychiatrist, assigned to them — who is available during a crisis. The Social Workers should be able to facilitate a “short-term stay” in this special “hotel”, until such time as the crisis has passed and the person is stable enough to return home.

We also need more supportive housing for long-term or permanent housing of individuals, needing ongoing support that cannot be found at home. Maybe separate floors for young people, seniors, males, females, etc., however, the dining and common areas are open to all.

These are just ideas. The experts have to weigh in. We need more innovative ideas.

People living with Schizophrenia are individuals with individuals needs. Not everyone has the same symptoms. Not everyone suffers from addiction. Not everyone is opposed to medication.

It’s about time we have the kind of support that is easily accessible and works for everyone — to reduce the burden on caregivers, and assist people living with schizophrenia to reach their potential and lead fulfilling lives.

We need to start writing and calling our local representatives and demanding meaningful change.

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