This past year, a senior leader at a large aid organization told me that when she was trying to introduce mental health care into the organization’s portfolio of activities, other senior leaders responded, “Wait, we’re not talking about crazy people, are we?” Her response was to re-focus the discussion on depression and anxiety. My response when I heard this story was, “Wait, why aren’t we talking about ‘crazy’ people?”
After all, if an illness renders people unable to advocate for themselves and stigma further silences them, shouldn’t the rest of us shout at the top of our voices for their right to care and dignity? And yet the global health community consistently overlooks people who suffer from mental illness, and especially those with symptoms of psychosis—delusions, hallucinations, disorganized speech, social withdrawal, or catatonia—that we might call “crazy.”
The World Health Organization estimates that schizophrenia, bipolar disorder, depression, and alcohol-use disorders affect around 450 million people and account for 12 percent to 14 percent of the global burden of disease, measured in disability-adjusted life years (DALYs), or “a year of health life lost to illness.” In addition to an individual’s loss of healthy life, families suffer both emotionally and economically, and in turn, societies are less productive and stable.
In comparison to mental illness, HIV accounts for 6 percent of the burden of disease, and malaria for 3 percent. On average, though, mental health receives less than 4 percent of the yearly global health budget. And the people implementing this budget are least likely to pay attention to the most severe forms of mental illness, such as psychotic disorders.
Despite progress in healthcare outreach to other marginalized communities—refugees, sex workers, war lords, people living with HIV, Ebola survivors, and many others—even health workers willing to work in the world’s most dangerous places tend to discriminate against the severely mentally ill. Due to widespread stigma against these individuals, and a lack of understanding of the causes and optimal treatments of their mental illness, most aid workers at best neglect them, or, at worst, violate their human rights.
In 2011, Michelle Funk, the WHO’s mental health policy coordinator, reported that, in many parts of the world, people suffering from serious mental illness “can be locked in cells or restrained for days and months without food and water, without any human contact, and leaving people to urinate and defecate in the very places where they are sleeping. And, what makes these abuses even more shocking is that they are happening at the very hands of the health workers who are meant to provide care, treatment, and support.” Five years later, her statement is unfortunately still true.
Another challenge is that while the causes of mental illness may be genetic, the symptoms are often culturally specific. In the 1970s, many people in the United States suffering from psychosis were paranoid about the KGB. Koro, a disorder where men fear their penises will shrink back inside their bodies, is seen only in Japan. And treatment efficacy can be idiosyncratic: What can work for one person can be utterly useless for another suffering from the same symptoms. The eloquent Eleanor Longden spoke on the TED stage about how talk therapy helped her overcome the voices she heard, while the Washington Post highlighted how a boy found relief for his psychosis by working with shamans.
The diversity of these experiences casts doubt on the patriarchal assumption that developing nations must strive to meet the standard of care set by the West. Research as far back as 1979 has found that individuals suffering from psychosis—estimated to be about 1 percent across global populations—may actually fare better in developing countries than in developed ones, perhaps due to greater social support and less isolation. But those gains are diminishing as developing countries adopt the use of anti-psychotic medications, which, while offering instant and much-needed relief from psychosis, have their complications. Some can cause an average weight gain of 100 pounds per patient, which can lead to complicating conditions such as diabetes—side effects that the FDA would never tolerated for other illnesses. Clearly, Western medicine has something to learn from the rest of the world.
Given the current lack of definitive treatments, the aid community needs to chart a global agenda to examine how best to address psychosis, as it did with HIV/AIDS. Such an agenda would include coordinated research into genetic and biological underpinnings of psychosis, and into effective treatments. But this will be possible only if the aid community can get rid of its own biases and have brave conversations about this most neglected population.
Many organizations are already working at the local level to incorporate mental health screening into their services and treat psychosis. International Medical Corp, for example, provides mental health and psychosocial support to populations affected by war and trauma, and Partners in Health initiated a depression screening questionnaire through its sister organization in Haiti. Other organizations, such as Bring Change 2 Mind, have organized impressive public awareness campaigns. But these efforts aren’t sufficient to address the vast scope of the problem, and there’s no major player in the development sector tackling psychosis on a global scale.
Given the gaps in our understanding of the causes and treatment of mental illness and psychosis, aid and development agencies need to adopt a truly new approach and:
- Form a global coalition of doctors, researchers, patients, and mental health advocates to set the global agenda needed to provide money, time, and attention to psychosis and accompanying mental illnesses. Because stigma is such a strong deterrent to research funding and treatment, this global agenda should be rooted in human rights values, not just medical science. It should emphasize an attitude of respect toward coalition members with different cultural norms or education levels, and a willingness to listen to others so that we can discover what we don’t know.
Increase funding for mental health research, particularly for psychosis. Given that mental health accounts for 12 to 14 percent of global disability-adjusted life years, this should be a no-brainer for donors like USAID, the Bill & Melinda Gates Foundation, and others. But it will require leaders brave enough to resist prematurely jumping to action. When it comes to psychosis, we run the risk of doing more damage than good if we intervene inappropriately, as the history of lobotomies and other inhumane treatment shows.
Establish a well-funded legal corps to advocate for the right of people with mental illness to live with dignity and freedom. It’s no longer conscionable that we look to lock away anyone with psychotic symptoms, whether in a hospital or a prison.
This last point is particularly important for the development community. Individuals suffering from psychosis are often the most vulnerable during humanitarian emergencies or in developing countries, and there is often only one psychiatrist per every 2 million people in low-income countries. With limited resources during natural and human disasters, these individuals are most likely to be denied access to the care they need (from medicines to talk therapy), and as highlighted earlier, they may also suffer from human rights infringement at the hands of aid workers. Psychosis hinders one’s ability to find safety, rebuild after material loss, or maintain social ties with one’s family and community. Fathers, mothers, sisters, brothers, sons, and daughters end up adrift with no voice to advocate for themselves. Meanwhile, people sent in to try to help them rebuild are rarely brave enough to face their own fears about psychosis—and thus ignore their needs, blame their genes, and pretend there’s no hope.
But if we can change our own attitudes and learn from everyone who’s ever faced the helplessness of psychosis, there is hope that surviving the disease can become a badge of honor, rather than a symbol of shame. Imagine a world where “psychosis survivor” rolls off the tongue as easily as “cancer survivor.” Is that really too much to ask?