APA and advocacy organizations like the National Alliance on Mental Illness (NAMI) have shared interests that demand—and create the opportunity for—wide-ranging cooperation.

So said psychiatrist, patient, and NAMI President Suzanne Vogel-Scibilia, M.D., at the Opening Session of APA's 58th Institute on Psychiatric Services in New York last month. She spoke at the invitation of APA President Pedro Ruiz, M.D.

With 1,100 chapters nationwide and with 30 percent of its members“ primary consumers” of mental health care, NAMI is believed to be the largest grass-roots mental health consumer advocacy organization in the United States.

Vogel-Scibilia noted that collaboration between the two organizations has intensified in recent years, as evidenced by the number of “NAMI doctors” in APA's ranks. NAMI doctors are clinicians who have devoted themselves to the care of people with serious and persistent mental illness.“ When I look at the leadership of APA and the American Association of Community Psychiatrists, I see a lot of NAMI doctors,” she said.

Vogel-Scibilia occupies a unique perspective from which to advocate for the marriage of clinician and consumer interests in mental health advocacy. She was diagnosed with bipolar disorder with psychotic features at age 15, is the mother of children with bipolar disorder, and is medical director of Beaver County Psychiatric Services—a community mental health center in Beaver, Pa.—in addition to being president of NAMI.

“I am probably the first NAMI president to wear three hats,” she said. “I am a clinical psychiatrist and work in a community mental health center. The majority of our patients are indigent and have no health insurance, or they are on Medicaid or have some skeletal coverage. About 40 percent of our patients have managed care. So we see a broad range of patients from kids to geriatric age, and everyone has serious and persistent mental illness.”

She added that children and other members of her family have mental illness, so she has the perspective of the parent and family member.

“I have bipolar disorder with psychotic features,” Vogel-Scibilia said. “I have had severe psychotic depression, three suicide attempts, and a postpartum catatonic episode while I was in residency. So I have seen the bad aspects of mental illness personally, and I have also seen recovery.

“One of the biggest problems in mental health advocacy is that people who want to defeat the goals of APA and NAMI do that by splitting the field. So we need closer connections.”

Drawing on her experience as patient, family member, and clinician, Vogel-Scibilia outlined six areas where APA, NAMI, and other consumer mental health advocacy organizations have shared interests calling for collaboration. In addition to stigma and the criminalization of mentally ill individuals, these areas include the following:

• Translation of research advances to clinical practice:  “The advances in psychiatric research in the last 10 or 15 years have really offered the opportunity for targeted treatment of people with mental illness,” Vogel-Scibilia said. “However, many times discoveries at the bench do not get translated into clinical trials that would be applicable to our population. And the next step is dissemination of [new knowledge] out to the grass roots. The lag time is very much a source of frustration for advocates.”

• Access to services:  Eliminating barriers to care, such as restrictive formularies and copays, is necessary to ensure that patients“ can get the treatment they need, when they need it, and in the right amount.”

• Metabolic symptoms associated with second-generation antipsychotics:  As a patient Vogel-Scibilia cited her own struggles with weight gain and testified to the effects that metabolic symptoms have on the patients she treats. “As a consumer I feel like I am on death row,” she said.“ I may have a stay of execution because I don't drink and smoke. But I find that in my practice patients don't die of suicide or homicide or accidents, but from metabolic complications.”

• Treatment of comorbid medical conditions in people with mental illness:  Vogel-Scibilia said that the medical symptoms of patients with mental illness are frequently disregarded, and she urged psychiatrists to play a larger role in the monitoring not only of metabolic symptoms but of patients' health in general.

She recalled her experience as a patient when she went to the hospital with shortness of breath. Because she'd had previous bouts of pneumonia, she suggested to the physician—who was unaware that Vogel-Scibilia was a doctor—that she needed an X-ray. But when the physician saw her medications, which included prescriptions for bipolar illness with psychotic features, he insisted that her symptoms were those of a panic attack. Later, an X-ray confirmed her self-diagnosis.

“People with mental illness in the medical setting are thought not to have medical illness,” she said. “Because of the medications I was on, I can't convince someone I'm medically ill. I didn't need to have a sign on my back saying, `Misread my symptoms.' All they had to do was see my meds.” ▪