David C. Henderson, M.D. Director, Schizophrenia Clinical and Research Program Director, Chester M. Pierce, MD Division

1. MASSACHUSETTS NAMI 2013 KEYNOTE David C. Henderson, M.D. Director, Schizophrenia Clinical and Research Program Director, Chester M. Pierce, MD Division of Global Psychiatry Massachusetts General Hospital Associate Professor of Psychiatry Harvard Medical School

2. The Burden of Mental Illness More disability than any other medical disorders: • Costs: $317.6 billion • Lethal consequences: • Life expectancy of patients with chronic mental illness is shortened by an average of 25 years • Suicide: 4th leading cause of death--ahead of diabetes, stroke and chronic lung disease

3. Contribution by different non-communicable diseases to disability-adjusted life-years worldwide in 2005 • Prince et al, Lancet, 2007

4. http://www.who.int/msa/mnh/ems/dalys/table.htm

5. Mental health has become a major international public health concern • "We believe that mental health is just as important as physical health, maybe even more so.“ Donna Shalala, former Secretary of the Department of Health and Human Services • "The challenge to humanity is to adopt new ways of thinking, new ways of acting, new ways of organizing itself in society in short, new ways of living.” Our Creative Diversity, UNESCO

6. Inter relationship between mental and physical health • Mental health is a key factor in the adoption and maintenance of unhealthy lifestyles • Mental health problems increase the risk of premature mortality from diseases such as cardiovascular disease • Physical health problems can affect mental health

7. Burden Vs BudgetWHO, ATLAS 2001

8. No Family Goes Untouched • 1 in 4 individuals suffer psychiatric illness each year • 1 in 16 will suffer a severe disorder • The remaining 3 will have a friend, family member or colleague who will suffer • About 20% of people with a psychiatric disorder have a co-occurring substance use problem • Schizophrenia affects 1%, major depression 8%, bipolar disorder 2%, and anxiety disorders 12% • 70% of psychiatric disorders have their onset during childhood or adolescence and are relapsing or chronic • Barriers to care exist: Only one-third of those who need treatment actually receive any

9. Former congressman Patrick Kennedy • Parity for treatment of mental illness and substance abuse is a human- and civil-rights issue • instrumental in helping to pass the landmark 2008 parity bill • He recounted his mother’s struggle with alcoholism and his problems with addiction, as well as his Aunt Rosemary’s intellectual disability, • within his own family mental illness and substance abuse were “the elephant in the living room that no one talked about.” • And he recalled how during his political career he parked his car three blocks away from his psychiatrist’s office to avoid being recognized. • And yet, ironically, he found himself, along with his late father, Sen. Edward Kennedy, being a champion of the 2008 federal parity law. • Kennedy emphasized that now—with a “final rule” from the government that will provide a regulatory framework for implementing the 2008 law expected very soon—is a decisive moment. • He said transparency in the way insurance companies make medical-necessity decisions will be crucial to ensuring the full implementation of parity. • “The exciting thing for all of you is that with health care reform, we are rewriting the rules,” Kennedy emphasized. • “Organizations like APA need to be even more aggressive than ever before, because we are at a formative point….This is the moment in history when we really have the opportunity to change the landscape.”

10. Stigma and Shame 50% of All Individuals with psychiatric illness never seek treatment

11. The Double Bind • People suffering from a mental illness have to deal both with the consequences of the illness and the STIGMA • The number one predictor of STIGMA is having the LABEL of mental illness, causing people to avoid treatment (and the label) as well as maintain secrecy in order to “pass” Rusch 2005; Link 1987

12. Most Medical Schools leave Clinicians untrained for tx’ing psychiatric Illness 4 weeks 104 Weeks Clinical Training

14. If patients do seek treatment it is mostly from Clinicians not trained in mental health 57%

16. Culture • Treating a patient from a different culture • Care must be taken when making observations, interpretations or stereotypes. • Clinicians must be aware at all times of their own feelings, biases, and stereotypes. • Significant inter-individual variability • individual may not fit into the expectations of their culture. • Probe for cultural clues • Remain flexible enough to recognize that the patient’s patterns and behaviors do not necessarily match the clinician’s expectations.

17. Cultural Identity • The individual’s ethnic or cultural references and the degree an individual is involved with their culture of origin and host culture is important. • It is important to listen for clues and ask specific questions concerning a patient’s cultural identity. • Attention to language abilities and preference must be addressed. • An Asian American male who grew up in southern United States may exhibit patterns, behaviors, and views of the world more c/w a Caucasian southerner. DSM-IV

18. Differences in Presentation of Illness • There are cultural differences in the presentation of psychiatric illnesses. • Cambodian woman may present with complaints of fatigue and back pain, while ignoring other neurovegatative sx. & unable to describe dysphoria. • This same patient may admit to hearing the voices of her ancestors, which is culturally appropriate. • In many traditional, non-Western societies • spirits of the deceased are regarded as capable of interacting with and possessing those still alive.

19. Diagnosis • Increased diagnosis of Schizophrenia in African Americans and Hispanics • Language • Non-Verbal- • poor eye contact- A.A, laughter-Japanese • Verbal- • word finding=paucity of thought, LOA • Translators-inaccuracies, omissions, editing • Written- • illiteracy rate

20. Acculturation and Immigration • Recent immigrants arrive to the United States with a host of difficulties and psychosocial problems. • A clinician must ask about and understand the circumstances surrounding their immigration. • There is significant literature on the contribution of acculturative stresses to the emergence of mental disorder. • The impact of acculturation may also lead to symptoms of depression, “culture shock” and even PTSD-like symptoms.

21. Impact on Psychiatric Treatment • Mistrust of the health care system • Legacy of of fraudulent/unethical scientific studies • Seek attention at later stage of psych./substance problem • Misdiagnosis • More severe diagnosis, depression under diagnosed, substandard care… • Cultural beliefs and expectations • Perception of illness and its treatment • Perception of substance use

22. Delays in Help-seeking in Psychotic Patients Universality and Ethnic Contrasts Skeate A, et al, Br J Psychiatry Suppl 2002; 43:s73-7.

23. Explanatory Model • Cultural explanations of the individual’s illness • It is important to understand how distress or the need for support is communicated through symptoms (nerves, possessing spirits, somatic complaints, misfortune). • The meaning and severity of the illness in relation to ones’ culture, family, and community should be determined. • This “explanatory model” may be helpful when developing an interpretation, diagnosis, and treatment plan. DSM-IV

24. Where hyenas are used to treat mental illness

25. Monrovia, Liberia

26. Causes of mental illness Stress Drugs Trauma Open mole Loss of property, family and jobs Witchcraft Aluminum Spirits Demons

27. War and Violence • All children in this age group were affected by the war and have some memory of it. • They all had to leave school at some point during the war. • Despite how common it is for students to be years behind in school, many expressed shame about this. • Some children saw neighbors or close friends shot and killed before their eyes and described it in vivid detail, as though they were reliving it. • Others never came that close to the fighting. They were very young and were not allowed to go outdoors. One boy lamented that some classmates were disruptive because they were former child soldiers. He explained that they have “brain problems” because of what they experienced during the war. • When asked how it was that he did not have brain problems from his own war experiences, he said, “Yeah, I saw those things, but it was at a distance, not too close.”

28. Family • Many children were sent to live with a relative in Monrovia in order to attend school • Of the children attending school, nearly all identified someone who looked after them. • As for the children out of school, there was a split. • Some sounded very much like the school children. They had been in school and were focused on returning to school. They also had caretakers. • There was another subgroup of street children who were very different from the school children. • They were living on their own or in drug dens, with dozens of people sharing a single room. • They were addicted to drugs and supporting themselves with theft or prostitution. • Some mentioned school, but their immediate goals were more focused on getting off drugs than returning to school.

29. Religion • Religious faith seemed to be an important source of hope and comfort for many children. • Among the street children, church attendance was a clear marker of community involvement and a more stable situation. • Those whose narratives were more like those of the school children nearly all attended church and spoke about religion. • Those who were using drugs said they did not attend church because they did not have “church clothes.”

30. Service Problems of Minority Groups • High use of hospitals and emergency rooms • Low use of community services • Poor treatment retention • Misdiagnosis • Missed Diagnoses • Access barriers, including lack of insurance • Social stigma

31. Availability of Care • Many psychosocial treatments with established efficacy have been developed but are not readily available or adequately reimbursed • Assertive community treatment, • Cognitive Behavioral Therapy • Supported employment and housing, • Psychoeducation, • Social-skills training, • Cognitive remediation

32. Estelle Richman • Successful recovery from serious mental illness in the community requires more than just clinical care—it requires a range of human and social support systems • At the IPS, she expressed optimism about the movement toward integrated care and the expansion of care, including the coverage of mental health and substance abuse treatment under the Affordable Care Act, • Vision of a truly successful mental health system not yet been achieved. • She emphasized the need for a range of social and supportive services in the community for people with mental illness. • “For people with mental illness to be successful in the community, community resources need to be expanded,” • “These resources include housing—moving from institution to group homes to independent living with supports is critical—as well as case management and supported employment. • Work and employment are central to the growth of the individual people want meaningful activities of their choice.”

33. Empowerment Recovery The December 2004 Consensus Conferenceon Mental-Health Recovery, SAMHSA Mental-health recovery is a journey of healing and transformation for a person with a mental health disability to be able to live a meaningful life in communities of his or her choice while striving to achieve full human potential or “personhood.” Recovery is a multi-faceted concept based on the 10 fundamental elements and guiding principles (shown in the circle) Self-direction Responsibility Hope Holistic Individualized & person-centered Respect Nonlinear Peer support Strengths-based SAMHSA = Substance Abuse and Mental Health Services Administration. Substance Abuse and Mental Health Services Administration Center for Mental Health Services; US Dept Health and Human Services; December 2004. Available at: http://mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/. Accessed February 7, 2007.

34. Comparing Neighborhoods of Adults With Serious Mental Illness and of the General Population: Research Implications • Results  Neighborhoods in which adults with serious mental illness resided had higher levels of physical and structural inadequacy, drug-related activity, and crime than comparison neighborhoods. Higher levels of physical and structural inadequacy, crime, drug-related activity, social instability, and social isolation were associated with higher concentration of persons with serious mental illness in the neighborhood’s adult population. • Conclusions  The differences in neighborhood characteristics identified in this study point to factors that merit closer attention as potential barriers or facilitators in the functioning, participation, and community integration of persons with serious mental illness. Byrneet al. Psychiatric Services 2013;doi: 10.1176/appi.ps.201200365

35. Impact of Ethnicity on Psychiatric Diagnosis • In the U.S., race and ethnicity have a significant impact on psychiatric diagnosis and treatment. • People of color are frequently misdiagnosed as having schizophrenia instead of an affective disorder. • African Americans patients receive higher doses of antipsychotic agents, have higher rates of involuntary psychiatric hospitalizations and seclusion-restraint. • Biases in treatment continue & must be acknowledged. • A number of studies have confirmed the misdiagnosis of schizophrenia in Blacks, Hispanics, and Asians in the United states.    Adebimpe VR. OVerview: White norms and psychiatric diagnosis of black patients. Am J Psychiatry 1981; 138:279-85; Mukherjee S, et al. Misdiagnosis of schizophrenia in bipolar patients: a multiethnic comparison. Am J Psychiatry 1983; 140:15671-4;

37. Thank You! “You must be the change you want to see in the world.” Mahatma Gandhi