By Susan Levine
Washington Post Staff Writer
Monday, February 6, 2006
Even among the incident reports crossing Craig Knoll's desk weekly now, this one stood out: A 43-year-old client of Knoll's mental health agency, a man who suffers from bipolar disorder, had come from his pharmacy frustrated to the point of meltdown. There were snags in his new Medicare drug plan. Of his four medicines, it would fill only two.
"I'm not going to take any of them anymore," he yelled, according to the report by caseworkers. Before they could do anything, he grabbed the prescription bottles he'd just gotten, ran for the restroom and dumped both in the toilet.
"He flushed everything he had on hand," recounted Knoll, executive director of Threshold Services in Silver Spring, whose staff spent day after day last month grappling with the many ramifications of the government's troubled program. Threshold came to the rescue of clients who couldn't get any medications or who, despite their pills, were in increasing distress because of all the confusion. It reimbursed several who'd mistakenly paid hundreds of dollars for pills that should have cost them a few dollars -- and replenished the supply of the client who had thrown his away.
"I'm not saying it's the federal government's fault he flushed his meds," Knoll said. "I'm saying it's the federal government's fault he couldn't get his meds. It's not surprising that people with mental illness respond in ways that people with mental illness respond."
Since the prescription program made its debut Jan. 1, some of the estimated 2 million mentally ill Americans covered because they receive both Medicare and Medicaid have gone without the drugs that keep their delusions, paranoia, anxieties or stress in check. Mental health service providers and advocacy organizations nationwide say they worry that scores are at high risk of relapse. Numerous people have been hospitalized.
"The continuation of medications is absolutely critical to keep them in community living," said Steven S. Sharfstein, chief executive of the Shepherd-Pratt Health System in Baltimore and president of the American Psychiatric Association. Last week, the association joined other mental health groups in a lengthy talk with Medicare officials about the myriad problems.
"I really don't know what the future will bring. . . . I have a very deep concern that psychiatric patients will suffer disproportionately," Sharfstein said. "If by the end of February or March, if [federal officials] haven't figured this out, we could have an epidemic on our hands."
The mentally ill are nearly a third of the "dual eligibles" who qualify for both Medicare and Medicaid because of income and disability or age. Mark B. McClellan, head of the Centers for Medicare and Medicaid Services, told a Senate committee hearing Thursday that a prime focus is resolving the "remaining transition issues" for this extremely vulnerable population.
That will not happen quickly. Like other Medicare-Medicaid recipients, the mentally ill were to have been signed up automatically for Part D at the start of the year, with responsibility for their prescriptions shifted seamlessly to private drug plans. Clinicians expected a bumpy beginning even in the best of circumstances. The new coverage often forces beneficiaries to switch from their usual pharmacies to different locations and strange faces, changes that Pam Cudahy of St. Luke's House in Bethesda said can have a huge effect on someone with few coping resources.
"Is the environment familiar? Is the person [behind the counter] familiar? When I show my prescription card, will the same thing happen as happened before?" Such questions represent daunting challenges, explained Cudahy, whose agency provides crisis care and psychiatric rehabilitation to about 1,000 teenagers and adults. "You don't want something to happen they're not expecting."
But repeatedly, she and others say, people have fallen through the program's cracks and discovered they have no insurance -- and have either run out of pills or rationed their medicine because they feared they would be left without.
Or they have been assigned to plans that will pay for some but not all of their psychiatric prescriptions -- an untenable and potentially dangerous situation given the complicated multiplicity of drugs people often take, with some pills to treat symptoms and others to counteract side effects. Unlike many medicines, psychiatric drugs are not easily substituted.
In Alexandria last month, a mother of two with a history of homelessness and attempted suicide left a drugstore empty-handed after being told her antidepressant was not covered. "For her, it was overwhelming," said Lix Wixson, director of acute care at the local Community Services Board. "She shut down."
The agency bought her a week's supply of Lexapro while it changed her plan and stabilized her condition. In fact, it made repeated purchases for clients in January at a cost exceeding $2,400. That's money unlikely to be reimbursed. "We can't do that indefinitely," Wixson said.
St. Luke's House turned to Montgomery County's mental health prescription contract for assistance. At one point, the organization was counseling 15 people with disabling illnesses, Part D errors and dwindling prescriptions. Michelle Ponder of Rockville was among them, and she admits she was scared as she counted down her pills. Her daily dosage includes Lamictal, a finely tuned mood stabilizer; Seroquel, which is used for schizophrenia or bipolar disorder; and Lithobid, a controlled form of lithium. Together, the three keep her out of the hospital, she believes.
Her housemate, Geraldine Champa, came close, too. More than a week into 2006, she was down to only two of the orange tablets that minimize the extreme mood swings and panic attacks that otherwise derail her life. With medication, she can manage much like the next person, with a part-time job and her own independence. Without it, she starts to lose control. The upset returns, and the anger. She has more and more difficulty dealing with others.
"You can't skip a day," she explained recently, as Ponder and several others at St. Luke's nodded their understanding.
Yet even months of well-informed guidance and planning are no guarantee. "It still crumbles in front of you," said a tired Cherie Sammis, clinical director of the Perry Family Health Center in Northwest, although the calls that have been waking her at 5:30 a.m., interrupting her at work and continuing late into the night have come not from center patients but from family halfway across the country.
Sammis's younger sister struggles with manic depression and schizophrenia. As her fears about her Medicare prescription coverage spiraled -- fears borne out by repeated computer glitches and plan inconsistencies -- she deteriorated precipitously. Recently, she told Sammis long-distance: " 'I've hurt myself before. . . . I'll hurt myself again. I've got to save my life.' "