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Trapped inside a medical tangle

Victoria Suhr thought her son's life finally had reached a stable plateau. No longer did Glenn Mezzasalma live in a psychiatric hospital. She had won her fight to get him a drug she believed would help him when no others had.

He lived on his own, had a job that earned him a little pocket change and did his own grocery shopping. For once, after two decades of struggle, schizophrenia no longer consumed his existence.

Then the fragile normalcy came crashing down.

Mezzasalma's psychiatrist at Marion-Citrus Mental Health reduced his daily dosage of clozapine, the antipsychotic drug that had brought balance to his life. It seemed he didn't need quite as much of the potent drug anymore.

The dosage decrease meant his twice-monthly prescription drug bill, typically covered by the state's Medically Needy program, would be reduced as of May 1.

That created a new problem: The cost decreased too much, and Mezzasalma suddenly was not spending enough for him to remain eligible for Medically Needy to cover that month's initial bills.

So Mezzasalma went without his medication. Within two weeks he was in the emergency room. He spent the next 12 days in a psychiatric hospital. The charges for this care totaled $9,829.

His two-week supply of clozapine would have cost the government about $170, Suhr said.

"Would you tell a diabetic, "Well, I'm sorry, you can't get your medicine?' " Suhr asked. "Why would they tamper with an individual's medication who's doing well on it? It doesn't make sense."

Her questions are at once simple and difficult to answer. The black-and-white answer is this: Mezzasalma is a recipient of a special type of Medicaid program that the federal government gives each state the option of offering.

He's considered "medically needy" because he is mentally disabled and meets the $5,000 asset limit criteria.

The program has no income limit. An individual's income determines his share of cost, which is the amount he must meet or exceed each month before Medicaid will kick in to pay that month's medical expenses. The higher the income, the more the share of cost.

If a recipient doesn't meet his share of the cost, Medically Needy doesn't pay the bills. No exceptions.

"Our regulations are very strict," said Bill D'Aiuto, acting deputy district administrator for District 13 of the Department of Children and Families.

DCF, following federal Medicaid guidelines, determines eligibility for the Medically Needy program in Florida.

"We don't have flexibility to reduce his share of cost in the eligibility guidelines," he said.

Not even when a recipient's health improves just slightly enough to dip his initial monthly expenses below the share of cost but not significantly enough that he can afford to pay the costs himself. Medicaid policy is based solely on monetary terms and can't be altered on an individual basis, national experts said.

In other words, the guidelines have no capacity to predict or prevent a situation like the one Mezzasalma suddenly found himself plunged into.

"Unfortunately, it's a Catch-22 for him," said Risa Elias, a Washington, D.C.-based senior policy analyst for the Kaiser Family Foundation's Commission on Medicaid and the Uninsured. "It's one of those unfortunate loopholes. He really just falls through the cracks . . .."

Mezzasalma might be in worse shape if he lived elsewhere, Elias noted. Some states are facing such desperate fiscal crises that they have eliminated or drastically cut their Medicaid-sponsored Medically Needy programs.

Florida legislators had planned earlier this year to end the state's program but eventually earmarked funds to keep it afloat at least one more year.

None of which is any comfort to Suhr, a 67-year-old widow in Hernando who had been cautiously enjoying her son's gradual progress in recent years.

"It has not been easy," she said during a recent interview.

Glenn Mezzasalma was a healthy, straight-A student with aspirations in architectural work before he had a seizure and was subsequently diagnosed with schizophrenia. He was 19.

From 1982 until 1994, he lived at the Rockland Psychiatric Center in New York. No one could find the right elixir for his illness, Suhr said. Mother and son tried to make the best of his plight: Glenn drew accolades for his work as a patient advocate and she served on the hospital's advisory board.

Things took a turn for the better when Suhr learned of clozapine, an experimental drug being used in Europe and Asia. She demanded it for her son and says the results were miraculous.

"I got my son back," she said.

He transitioned into less restrictive group housing and later to an apartment with another hospital patient. Suhr agreed to her husband's request to move to Florida three years ago only when he promised Mezzasalma could come too.

He rented a one-bedroom home in Beverly Hills and got a job doing odds and ends at a nearby church. The pay was minimal but enough to allow him to buy a new pair of shoes or a shirt on occasion.

Mezzasalma wasn't opposed to taking less medicine. In fact, he'd prefer not to take it at all, he said. The clozapine makes him groggy and almost requires a daily nap. It's so powerful that one of the side effects is blood disease, so he undergoes blood work every two weeks before the next dosage can be issued.

Lowering the dosage would help him function better during the day. Obviously, the call was up to his psychiatrist, Dr. Sonal Parikh.

But when DCF officials told Mezzasalma the smaller dosage would prevent the Medically Needy program from covering at least his first drug bill in May _ it cost less than his assigned $568.50 share of cost _ the psychiatrist seemed to have little control.

"Doc, what am I supposed to do?" Mezzasalma remembers asking her.

"I don't know," she told him.

A nurse who works with Parikh said last week it was against Marion-Citrus Mental Health policy for Parikh to discuss a patient's case. His DCF case worker and agency officials also would not discuss specifics about his situation.

Mezzasalma couldn't afford the prescription on his own. When his two-week supply ran out, he didn't get it refilled. The forced decision caught up with him quickly.

He was watching TV one afternoon when he started having trouble breathing, he said. An ambulance brought him to Citrus Memorial Hospital. From there he went to Lifestream Behavioral Center in Leesburg and stayed from May 9 through 20.

The end result of the fiasco was that doctors pumped his daily dosage back up to its previous levels, thereby making him eligible for the share of cost program once again in June.

"They set him back," Suhr said. "He has been set back since they decided that he didn't meet his share of cost. He's still not the same, but he's getting there."

"I've been through this so many times already," Mezzasalma said wearily.

Suhr wants her son's treatment taken out of the state's hands. She's trying to get him into the drug assistance program offered by Novartis, the pharmaceutical company that produces clozapine. The program has assisted about 200,000 patients who take life-sustaining drugs during the past two years, said company spokesman Bob Laverty.

But even this relief isn't coming through. Now that her son is meeting his share of cost again, his psychiatrist said last week she won't sign off on the alternative assistance program, Suhr said.

And DCF officials can't promise something like the May situation won't happen again. In the event that Mezzasalma fell short of his share of cost again, "we would do everything in our power to refer him to other services to ensure that he got his medication," D'Aiuto said.

The unknown is a mother's worst nightmare. Suhr's husband, who was Mezzasalma's stepfather, died this spring. Her other grown children live in New York.

What she wants most is the peace of mind that would come from knowing her middle child's mental health needs would be taken care of for good, particularly after she is gone.

She is tired of fighting.

_ Colleen Jenkins can be reached at 860-7303 or