State won't cover seizure treatment

Despite its effectiveness, Vagus Nerve Stimulation is out of reach for Medicaid patients in Florida.

By CHRISTOPHER GOFFARD

© St. Petersburg Times, published July 11, 2000

Pamela Murphy, a 43-year-old Brandon woman who suffers epileptic seizures in her sleep, sometimes wakes with her tongue chewed up and her mouth full of blood.

Dominique Bacci is a 6-year-old Port Richey girl whose ability to learn has been so crippled by seizures that she cannot write her name. Lisa Boswell is a 21-year-old woman living in a Plant City group home, seizures having frozen her mental ability at a third- or fourth-grade level.

Rafts of medications have failed them all, and all might benefit from a relatively new treatment called Vagus Nerve Stimulation. In the treatment, approved by the Food and Drug Administration in 1997, a titanium-encased disk implanted in the chest sends impulses to the vagus nerve in the neck, quieting the electrical blizzards that characterize epilepsy.

Doctors laud its effectiveness and say it is becoming a standard treatment for the disease. But for patients such as Murphy, Bacci and Boswell, who are on Medicaid, there's a hurdle between them and the treatment: money.

The device has a price tag of $11,460; the surgery to implant it can boost the cost to $15,000 or $18,000. In Florida, Medicaid reimburses only about $1,000 to $2,000 of that, in contrast to 44 other states that pay enough of the bill to make it worthwhile for hospitals to do the surgery, said Max Gill, an agent for Cyberonics, the company that makes the equipment.

The result? Some hospitals are reluctant to perform the operation on patients without private insurance. Gill said he knows of only one -- Jackson Memorial in Miami -- that is now doing it regularly.

With the prodding of a Cyberonics lobbyist, the state Legislature recently approved $1.7-million to reimburse hospitals for the treatment. The money died, however, with Gov. Jeb Bush's line-item veto May 31.

"It would not be a good practice to have this kind of separate appropriation for this kind of Medicaid treatment," said Justin Sayfie, the governor's spokesman. It would be out of the ordinary, he said, to have a separate stream of money supplementing a specific Medicaid payout.

That answer doesn't satisfy the parents of Dominique Bacci, who hoped the vagus device might reduce their daughter's dependency on 21 pills a day.

Doctors say the vagus device is not expected to eliminate seizures altogether, as brain surgery conceivably can, and shouldn't be considered a substitute for surgery.

But the Baccis are desperate to avoid brain surgery on Dominique: It would involve removing the part of her brain where her seizures originate, which is also the part that controls her motor functions. That would leave her crippled.

The Baccis hope the vagus implant may help prevent that scenario. They consulted with doctors at the epilepsy program at Tampa General Hospital about the procedure. But after Bush's veto, Cyberonics told Kelly Bacci, the girl's mother, that funds would not be available for the operation.

"I was shocked. I stood around for almost 45 minutes going, "What do we do now?' " Kelly Bacci said. "We were looking so forward to doing it. And now we don't know what to do. I have a really hard time wanting to proceed" and remove the part of Dominique's brain that controls motor ability. Kelly Bacci finds it ironic that Medicaid would cover brain surgery, though it is riskier and more expensive.

Pamela Murphy, the Brandon woman, said the seizures that attack her in her sleep every night have prevented her from carrying on a normal life. She used to work as a house cleaner and waitress. "No one likes to hire me due to, "What if she has a seizure while she's at work?' " she said.

She, too, fears the possibility that a part of her brain may have to be removed to control her seizures, and she worries the veto will prevent her from getting the vagus implant. With the device, she said, "They're not taking anything out, they're putting something in. They're not messing with the brain when they do that."

Dr. Selim Benbadis, director of the epilepsy programs at Tampa General and at the University of South Florida, said the vagus stimulator significantly reduces seizures in about half the patients who get it.

"What we need to do is convince Medicaid this is the standard of care, and people need it," he said. "This is not experimental, and there's no justification for denying it." He said he is optimistic, however, that Medicaid will come around. "It's only a matter of time," he said.

Most other states don't have problems with Medicaid reimbursement for the procedure, Cyberonics said. Dr. Ray Blain, a senior medical consultant with California's Medicaid program, MediCal, said there are mechanisms in place whereby doctors and hospitals can be fully reimbursed for the cost of the procedure in that state.

"We don't want to penalize hospitals," he said. "The goal of our program is to get patients appropriate medical care. And if they get appropriate care, we want to pay for it."

In its request to the Florida Legislature for money, Cyberonics argued funding the device would actually save taxpayers money, because it would reduce the emergency room visits of epilepsy patients.

Ellen Fiss, a spokeswoman for Tampa General, expressed sympathy for the plight of Medicaid patients but said the hospital simply can't afford to give them the treatment. "It has to be a somewhat realistic reimbursement for us to be able to do it," Fiss said. "We don't know why they (Medicaid) don't cover it. We wish they did cover it."

Lynne Metz, a consultant in Medicaid program development in Florida, said the program does pay for part of the treatment: doctors' fees, and a set fee for every day a patient remains in the hospital. But it does not pay for the vagus stimulator itself, and she acknowledges that leaves the hospitals footing much of the bill.

Said Dr. Jose Ferreira, the Tampa-based pediatric neurologist who has been treating Dominique Bacci: "There are a lot of patients that would like to get it if they could."

Karen Osborne, a Cyberonics agent, said there are at least 65 to 70 epilepsy patients on Medicaid in western Florida who are waiting for funding to have the procedure done.

Virginia Boswell wants the treatment for her daughter, Lisa, who is unable to care for herself as a result of epilepsy-induced brain damage. The device might or might not help, she said, but when you have tried everything else, you grasp at any hope.

Boswell said doctors at Tampa General told her that her daughter was approved for the vagus implant surgery. That was before the veto.

"I just can't believe (Bush) vetoed it," she said. "I think we should take our kids to Tallahassee to let the governor see how bad off they are."

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