In 2011, I was speaking at an international AIDS conference where the first two speakers were from UNAIDS and Harvard. UNAIDS announced a new campaign: Getting to Zero: Zero New HIV Infections, Zero AIDS‐Related Deaths, and Zero Discrimination. (A year later, Secretary of State Hillary Clinton called for an AIDS‐Free Generation.) The Harvard researcher reported the results of a groundbreaking study demonstrating that individuals living with HIV/AIDS who were receiving effective treatment posed virtually no risk of transmitting the infection. A newly diagnosed 20‐year‐old today can expect to live another 50 years on treatment.
I was astounded by the scientific progress that could allow UNAIDS to envisage an end to AIDS. Knowing how intractable the AIDS pandemic once seemed, I asked how this could happen. And why, I inquired, had the same not occurred with mental illness, the field in which I began my career?
I was the legal director of the National Association of Mental Health in the United Kingdom in the 1980s.1 At that time, major mental illnesses were treated primarily with powerful antipsychotics, such as haloperidol, that carried the debilitating side effects of tardive dyskinesia—involuntary movements of the tongue, lips, face, trunk, and extremities. When I first saw mental patients shuffling, tongues protruding, and physically shaking, I thought they exhibited symptoms of mental illness, but soon realized it was the treatment itself. Newer second‐generation medicines cause metabolic syndrome, obesity, and cardiovascular disease. In other words, the therapeutic science of mental health has not come nearly far enough.
Another indicator of the lamentable failure to meet the needs of persons with mental disabilities is the large number of vulnerable individuals warehoused in large, inhumane institutions, often for decades. While the deinstitutionalization movement (a strained alliance between civil libertarians and fiscal conservatives) tore down sterile hospitals, today many individuals with mental illness are in prisons or nursing homes or are homeless.
More than a quarter of the homeless in America have a severe mental illness. The US Bureau of Justice estimated that in 2005, 705,600 mentally ill adults were incarcerated in state prisons, 78,800 in federal prisons, and 479,900 in local jails2 and that they were up to 4 times more likely to be on probation or parole. A disproportionate number of prisoners in isolation suffer from mental illness. If the imprisonment of the mentally ill is one of society’s deepest pathologies, then the isolation of a vividly psychotic prisoner is cruel beyond imagination.
– Lawrence O. Gostin