Medicare Woes Take High Toll on Mentally Ill

Medicare Woes Take High Toll on Mentally Ill

Oscar Sosa for The New York Times

Stephen Starnes, 49, has paranoid schizophrenia and is a resident at Dayspring Village, a Florida assisted living center for the mentally ill.


Published: January 21, 2006

HILLIARD, Fla., Jan. 16 - On the seventh day of the new Medicare drug benefit, Stephen Starnes began hearing voices again, ominous voices, and he started to beg for the medications he had been taking for 10 years. But his pharmacy could not get approval from his Medicare drug plan, so Mr. Starnes was admitted to a hospital here for treatment of paranoid schizophrenia.

Mr. Starnes, 49, lives in Dayspring Village, a former motel that is licensed by the State of Florida as an assisted living center for people with mental illness. When he gets his medications, he is stable.

"Without them," he said, "I get aggravated at myself, I have terrible pain in my gut, I feel as if I am freezing one moment and burning up the next moment. I go haywire, and I want to hurt myself."

Mix-ups in the first weeks of the Medicare drug benefit have vexed many beneficiaries and pharmacists. Dr. Steven S. Sharfstein, president of the American Psychiatric Association, said the transition from Medicaid to Medicare had had a particularly severe impact on low-income patients with serious, persistent mental illnesses.

"Relapse, rehospitalization and disruption of essential treatment are some of the consequences," Dr. Sharfstein said.

Dr. Jacqueline M. Feldman, a professor of psychiatry at the University of Alabama at Birmingham, said that two of her patients with schizophrenia had gone to a hospital emergency room because they could not get their medications. Dr. Feldman, who is also the director of a community mental health center, said "relapse is becoming more frequent" among her low-income Medicare patients.

Emma L. Hayes, director of emergency services at Ten Broeck Hospital, a psychiatric center in Jacksonville, said, "We have seen some increase in admissions, and anticipate a lot more," as people wrestle with the new drug benefit.

Medicare's free-standing prescription drug plans are not responsible for the costs of hospital care or doctors' services. "They have no business incentive to worry about those costs," said Dr. Joseph J. Parks, medical director of the Missouri Department of Mental Health, who reported that many of his Medicare patients had been unable to get medicines or had experienced delays.

At least 24 states have taken emergency action to pay for prescription drugs if people cannot obtain them by using the new Medicare drug benefit. Florida is not among those states.

In an interview, Alan M. Levine, secretary of the Florida Agency for Health Care Administration, said: "We've set up a phone line and an e-mail address for pharmacists. We try to solve these problems on a case-by-case basis. We have stepped in to get drug plans to pay for prescriptions, so people don't leave the pharmacy without their medications."

Federal officials said they were moving aggressively to fix problems with the drug benefit. About 250 federal employees have been enlisted as caseworkers to help individual patients. The government has told insurers to provide a temporary supply - typically 30 days - of any prescription that a person was previously taking. And Medicare has sent data files to insurers, supposedly listing all low-income people entitled to extra help with premiums and co-payments.

But in many cases, pharmacists say, they still cannot get the information needed to submit claims, to verify eligibility or to calculate the correct co-payments for low-income people. And often, they say, they must wait for hours when they try to reach insurers by telephone.

S. Kimberly BelshĂŠ, secretary of the California Health and Human Services Agency, said the actions taken by the federal government "have not been sufficient to address the problems that California residents continue to experience."

At Dayspring Village, in the northeast corner of Florida near Jacksonville, the 80 residents depend heavily on medications. They line up for their medicines three times a day. Members of the staff, standing at a counter, dispense the pills through a window that looks like the ticket booth at a movie theater.

Most of the residents are on Medicare, because they have disabilities, and Medicaid, because they have low incomes. Before Jan. 1, the state's Medicaid program covered their drugs at no charge. Since then, the residents have been covered by a private insurance company under contract to Medicare.

For the first time, residents of Dayspring Village found this month that they were being charged co-payments for their drugs, typically $3 for each prescription. The residents take an average of eight or nine drugs, so the co-payments can take a large share of their cash allowance, which is $54 a month.

Even after the insurer agreed to relax "prior authorization" requirements for a month, it was charging high co-payments for some drugs - $52 apiece for Abilify, an anti-psychotic medicine, and Depakote, a mood stabilizer used in treating bipolar disorder.

The patients take antipsychotic drugs for schizophrenia; more drugs to treat side effects of those drugs, like tremors and insomnia; and still other drugs to treat chronic conditions like diabetes and high blood pressure.

"If I didn't have any of those medications, I would probably be institutionalized for the rest of my life," said Deborah Ann Katz, a 36-year-old Medicare beneficiary at Dayspring. "I'd be hallucinating, hearing voices."

Michael D. Ranne, president of the Jacksonville chapter of the National Alliance on Mental Illness, said the use of powerful psychiatric medications "virtually emptied out state mental hospitals" in the 1970's and early 80's. Ms. Katz said she had been "in and out of hospitals" since she was 13.

Sponsors of the 2003 Medicare law wanted to drive down costs by creating a competitive market for drug insurance. They focused on older Americans, not the disabled. They assumed that beneficiaries would sort through various drug plans to find the one that best met their needs. But that assumption appears unrealistic for people at Dayspring Village.

Heidi L. Fretheim, a case manager for Dayspring residents, said: "If I take them shopping at Wal-Mart, the experience is overwhelming for them. They get nervous. They think the clerks are plotting against them, or out to hurt them."

Residents of Dayspring Village see worms in their food. Some neglect personal hygiene because they hear voices in the shower. When nurses draw blood, some patients want the laboratory to return it so the blood can be put back in their veins.

Under the 2003 Medicare law, low-income people entitled to both Medicare and Medicaid are exempted from all co-payments if they live in a nursing home. But the exemption does not apply to people in assisted living centers like Dayspring Village.

Douglas D. Adkins, executive director of Dayspring Village, said: "Some of the pharmacists have been saying, 'No pills unless we get a co-payment.' Well, how are these people going to get the money for a co-payment? They don't have it."

Eunice Medina, a policy analyst at the Florida Department of Elder Affairs, said the state was trying to "find a solution" for people in assisted living centers.

"We are all aware that the next couple of months will be difficult for these clients, and that the possibility of a transition to a nursing home is their only option if prescriptions are not covered in assisted living facilities," Ms. Medina said in a memorandum to local social service agencies.

NAMI | Social Security and Disability Benefits

Persons with a serious mental illness are just as entitled to disability payments as
... In most states, Social Security Disability Insurance comes with Medicare and ...

Luis E. Collazo, administrator of Palm Breeze, an assisted living center for the mentally ill in Hialeah, Fla., said many of his residents were forgoing their medications on account of the new co-payments.

"Because of their mental illness," Mr. Collazo said, "they don't have the insight to realize the consequences of not taking their medications. Without their medicines, they will definitely go into the hospital."


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