Challenging Disease Does Not Daunt Cadre of Dedicated Advocates

Lydia Lewis is growing tired of the long explanation she still feels compelled to give when she introduces herself. As president of the Depression and Bipolar Support Alliance (DBSA), she always makes sure she refers to the group’s old moniker, the National Depressive and Manic Depressive Association.

Even so, some psychiatrists and mental health professionals still don’t show any sense of recognition.

“I don’t really know how many psychiatrists know we are out there,” Lewis told Psychiatric News.

Lewis noted that psychiatrists need patients as much as patients need psychiatrists. “What we need to do is act more like a team,” she emphasized.

While lack of recognition may be common, she is tirelessly stumping to turn that around.

“The thing that really stands out about us is that we are patient led—our board, our staff, our volunteers; more than half have bipolar disorder or depression,” Lewis said.

A donor-based organization, DBSA’s popularity has been growing exponentially. An active media campaign—including a public-service announcement featuring the surgeon general—and working with local physicians led to more than 1 million hits to the organization’s Web site, www.dbsaalliance.org, last year. During January alone, more than 88,000 informational brochures were downloaded from the site.

DBSA has conducted several surveys on the understanding, expectations, and needs of patients regarding their illness and its treatment, as well as on public perception of bipolar disorder and depression.

“Nearly half of all Americans have never heard of bipolar disorder,” Lewis noted, “and one-quarter of Americans think that people with a mood disorder are dangerous. More than two-thirds of Americans believe that psychiatric medications are habit forming and change personality. And 12 percent of Americans still associate mental illness with words like ‘crazy,’ ‘delusional,’ or ‘needing a straightjacket!’ ”

What Patients Say They Need

That ignorance and stigma transfer directly to patients, Lewis emphasized.

“Patients are absolutely desperate for information. A high percentage of patients,” Lewis said, “would like their psychiatrist to give them written information, yet only about half of those get any. And they are not too enthusiastic about pharmaceutical company pamphlets.”

Lewis urged physicians to refer patients to the DBSA Web site, where they will find information written by fellow patients and reviewed by experts in the field of mood disorders.

‘Disease of Isolation’

“This is such a disease of isolation,” Lewis continued, “but when people find us, things just kind of open up.” Lewis added that due to the constraints that managed care imposes on psychiatrists, some patients tell her they learn more from the DBSA Web site than from their doctors. “The psychiatrists simply don’t have time anymore to really sit down and educate and inform their patients,” she noted “It’s terrible really.”

DBSA operates more than 1,500 support groups in communities in every state. Groups are run by peers, patients, and those in recovery. “These people have been where new patients currently are, and the groups allow them to have much more face time together than they ever have with their doctor. Members tell us the groups allow them to communicate better with their doctors and even adhere to their treatment plans better.”

Lewis also called on physicians to become familiar with local DBSA members and support-group leaders in their communities. Network with them, she urged, so that when patients need support, you can “refer them to the local support-group leader directly and hand them their phone number instead of just referring them to the Web site. But at the very least, refer them to the Web site.”

DBSA also works on the state and national levels advocating for mental health parity and against restrictive formularies and psychologist prescribing. The group holds two conferences each year, one scientific and the other an annual meeting for patients and support-group leaders to learn the latest advances in diagnosis and treatment.

More information about DBSA is posted on the Web at www.dbsaalliance.org. ▪