Miami Herald - March 14, 2006
Carol Marbin Miller, cmarbin@MiamiHerald.com

Alan Levine, secretary of the state Agency for Health Care Administration, disputed a report Sunday in The Miami Herald quoting several healthcare officials as saying Medicaid was cutting back on payments for food supplements for children with severe disabilities, HIV and other serious medical problems.

"From its sensational headline to its actual content, The Miami Herald's recent article was absolutely not true," Levine wrote Sunday in an e-mail to lawmakers. "Florida Medicaid has not stopped paying for medically necessary feeding supplements for children and the program that funds these services has not been cut."

Levine blamed the inability of some patients to obtain Medicaid payments for their feeding supplements on their doctors' lack of understanding of Medicaid's system, designed to ensure that only "medically necessary" services receive funding. "It appears the problems reported in the story are related to whether the physicians were adequately educated on how to access the prior-authorization system," Levine said. "I have asked that the prior-authorization process for nutritional supplements be suspended until such time as the providers have been properly educated, and have a full understanding about how to process their claims."

*CLAIM CALLED `ABSURD'*

Doctors, however, said the problem is not with their understanding of the paperwork but with Medicaid's desire to save money by cutting back on necessary care.

Levine's response that the problem is the doctor's lack of understanding is "absurd," said Dr. Michael Light, professor of clinical pediatrics at the University of Miami and director of UM's cystic fibrosis center.

"It is not our fault," said Light, who added that specialists like him have become experts in navigating government paperwork.

Despite repeated requests from The Miami Herald, AHCA officials have not said how many children and adults have received subsidies for their nutrition formula, or how much the state spends for the program annually.

Several South Florida doctors and healthcare workers continued to insist that Medicaid had dramatically cut back on reimbursements for feeding supplements for some of the state's most needy and critically ill patients -- including children and adults with terminal illnesses.

"It's absolutely horrible," said Dr. Audrey Ofir, a pediatrician who cares for children with severe health problems at UM. "This has been extremely upsetting."

PATIENTS SUFFERING

One of Ofir's patients is a 12-year-old girl with a form of muscular dystrophy who obtains almost all of her nutrition from a feeding tube surgically connected to her stomach. "She is the same weight as a younger sibling who is six years younger," Ofir said.

Ofir was forced to hospitalize the girl recently after Medicaid officials repeatedly refused to pay for the girl's milk formula -- Ofir found five separate denials between Dec. 19 and Feb. 23 in the girl's chart. "These cuts are not helping anybody," Ofir said. "When these things happen, who will end up paying the hospital costs? You and me."

Light said he has a 35-year-old patient whose life is in danger because of the state's repeated denials of funding. The woman is on the state's lung-transplant list, but if her weight drops below 100 pounds she will no longer be eligible for a life-saving transplant.

"This is potentially life-threatening," Light said. "It's a dangerous decision."

RECENT POLICY CHANGE

Light said the state has refused to pay for feeding supplements for several of his patients after deciding, in recent months, that Medicaid would pay for formula inserted into a feeding tube only if the supplement makes up 100 percent of an adult's nutrition, or 50 percent of a child's. Some of his adult patients are able to eat a little -- and therefore are no longer eligible for Medicaid-paid nutrition, he said.

"For people with cystic fibrosis, this doesn't make sense," Light said. "You don't want them to gain 100 percent of their nutrition from a [feeding tube] when they can eat."

Another of Light's patients, 23-year-old Elizabeth Carrera of Hialeah, will likely be hospitalized in coming days, he said, because she has lost about a half-dozen pounds since the state stopped paying for her formula.

Carrera says it would cost her about $2,000 each month to pay for the four cans of Peptomin formula she pours into her feeding tube each day.

Medicaid refused to continue paying for the supplement beginning in February, she said.

Carrera should weigh 104 pounds; she now weighs 94, she said, and she's already feeling the effects. "I just started feeling more out of breath, and I cough more at night. I'm feeling more tired."

"It's heartbreaking. I have a terminal illness. I will eventually pass away because of it. With the medical technology we have, I always kept faith that I would live as long as possible. But when they told me they would not pay for my feedings, it made me feel like it would shorten my life."

Christopher Rayborn, a clinical nurse at UM's children's HIV clinic, said some of his patients also may end up in the hospital if the state doesn't rethink the cutbacks in his program.

'ABUSE, FRAUD' BLAMED

In recent months, Rayborn said, Medicaid has refused to continue funding the feeding supplements for children who suffer from common side-effects of the virus, such as HIV muscle-wasting and failure to thrive.

Rayborn said he was told by Emily Fritz, Medicaid's community-relations director, that Medicaid had been "abused" by children with HIV who did not really need the nutritional supplements. Fritz also said Medicaid was seeking to eliminate "a significant amount of fraud," said Rayborn.

Medicaid officials insisted that clinic officials should "coach" patients on "how to make the most of their diet" without the supplements, Rayborn said.

"Our team replied that that was just not a plausible strategy," Rayborn said. "In the long run, our patients are going to end up in the hospital. They are going to be debilitated."

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