"I think the most important thing is to accept the disorder like any other medical disorder, that treatment works and that recovery is not only possible, but probable as well." - Individual with schizophrenia interviewed for a new NAMI study.
A special session on "Schizophrenia: Public Attitudes, Personal Needs" was held on Saturday night at the convention in Orlando, Florida. A panel of peers and family members, moderated by NAMI medical director Dr. Ken Duckworth, spoke about the findings of the Harris Interactive survey of 250 individuals who live with schizophrenia, 250 family caregivers, and the general public.
Schizophrenia is twice as common as HIV/AIDS, yet it is often misunderstood. The good news is that 85 percent of those polled recognize this disorder as an illness, and 79 percent believe that with ongoing care, people diagnosed with schizophrenia can lead independent lives.
However, 49 percent of the general public had discomfort dating someone who has received treatment, and the numbers increase if a person isn't in treatment; 80 percent wouldn't date someone in that case. 80 percent would feel uncomfortable working for such a person, and 77 percent would also feel uncomfortable working with an untreated individual.
As the survey makes clear, people are inclined to "distance themselves" dramatically from people not receiving treatment Two million Americans live with the illness, yet only a third receive treatment. Most startling, there is an average delay of 8.5 years between the onset of symptoms and the beginning of treatment for schizophrenia.
Striking at the threshold of adulthood when women and men in their teens and 20s are in school, entering the workforce, beginning families or making other formative choices, a breakdown has life-changing consequences in the form of lost or damaged relationships, disability, academic failure, unemployment, jail or prison and other conditions.
Of the group of individuals living with schizophrenia who were polled, 56 percent received Social Security Disability Income (SSDI); 51 percent Medicare; 45 percent Medicaid; 40 percent food stamps and 34 percent Social Security Income (SSI). 59 percent under the age of 35 reported decreased engagement in job searches. 63 percent have accepted money or financial support from family members or friends; 56 percent have depended on them for housing.
People living with schizophrenia nearly universally say that access to a psychiatrist (95 percent) and medication and treatment (96 percent) are most helpful to improving their condition. As well, 93 percent believe more effective medications and treatment, as well as better private health insurance (85 percent) would help improve their condition.
The NAMI special session panelists take on the findings:
A peer, Laura Halper, from Boston, MA who graduated from Duke University, weighed in. She stopped dating, stopped going to parties or hanging out with friends, and when she got sick, Laura's IQ dropped to 74, borderline mental retardation. "Subway stations were a torrential place for me, like funhouse mirrors," she intimated. Coin-op laundries were especially problematic, as she had forgotten the basic routine of how to wash clothes. Laura suggested there's a delay in treatment because of a lack of communication. Paranoid ideation leads to a lack of trust. How do you seek trust from someone who cannot trust?
Nora Haynes, NAMI-Georgia's state president, recounted her trials getting treatment for her son Joey: "My fear is he will live under a bridge when I die." Her situation is typical of the survey's caregiver respondents. 95 percent say access to a psychiatrist, and to medication and treatment, would be most helpful for improving the condition of the persons in their care.
Another peer, Elyn R. Saks, the author of the Center Cannot Hold: My Journey through Madness (and who I interviewed for this blog), wore her professor's hat and felt people living with schizophrenia should be asked what we want and need, and also to ask families. The magic bullet, she felt, is to get people to want treatment.
The NAMI advisory committee members for "Schizophrenia: Public Attitudes, Personal Needs" recommended the following for improving attitudes and meeting needs:
1. Promote Public Awareness and Knowledge
Quite simply, "Expanding access to treatment for people living with schizophrenia and helping them to achieve higher levels of recovery cannot happen without public support." Showing the face of schizophrenia through personal contact and stories of recovery is the key to educating others. NAMI's In Our Own Voice program features peers living with mental illness who engage the public in outreach.
2. Close the Gap Between Onset of Symptoms and Treatment
To do this, recognition can be promoted through greater education and training of professionals, particularly by those who interact with teenagers and young adults. Individuals, families, primary physicians, teachers and others need to know what the symptoms of schizophrenia are. Early intervention and prevention are keys to treating this devastating illness.
3. Provide Welcoming Access to Primary Healthcare
According to the guide, "Primary care physicians and other front-line health professionals need to understand the nature of mental illness, and be trained to respond helpfully in addressing physical complaints and conditions." It is an interdisciplinary, cultural challenge that must begin in medical and nursing schools, and continue in practice settings with continuing education and in-service trainings.
4. Increase Access to Treatment and Services
Full access to medications and other treatment must be preserved. Unfortunately, in an effort to control costs, "State Medicaid and privately-managed care regimes routinely restrict access to care through restrictive formularies and ‘fail first' policies." As well, access to care must include an end to unfair discrimination through mental health parity, in Medicare as well as private, employer-paid health plans.
5. Provide Education and Support for Caregivers and Individuals Living with Schizophrenia
Public-private partnerships at the national, state and local levels are well-suited to this need and must be person-centered, community-based, and supported by providers. NAMI offers three education programs: Peer-to-Peer: a free course on relapse prevention and wellness for persons living with any mental illness diagnosis; NAMI Connection: free recovery support groups that meet 90 minutes a week and are run by individuals living with mental illness for other persons who live with any diagnosis; and Family-to-Family: a free course for family caregivers of individuals with severe mental illnesses that discusses clinical treatments and teaches knowledge and skills that family members need to cope more effectively.
6. Invest in Research
Indeed, more effective medications and treatments are needed. The greatest implication of the study is the need for scientific and medical research that develops a more highly effective "third generation" class of medications, instead of simply providing incremental improvements in the drugs already on the market.
My next blog entry will feature an interview with Dr. Ken Duckworth, and Stephen M. Goldfinger, MD, the professor and chair, Department of Psychiatry and Behavioral Sciences, State University of New York Downstate Medical Center. Together they offer a glimpse into schizophrenia in young people: treatment and hope for the future.
Published On: June 18, 2008