Epileptic fights the American Health Care system

Here's a story with a happy ending. It's about American health care at its best as well as its most aggravating.

More specifically, it's about Sonya Hearn of West Islip, a bright and bubbly homemaker who has lived for most of her 42 years haunted and tortured by the curse of epilepsy. But since July 18, when she had surgery to remove a portion of the right side of her brain the size of a man's thumb, she has been free of seizures for the first time since she was 8 years old."Words can't fully describe what that is like for me," she wrote in an e-mail.

"I have been given a life that I never knew I could enjoy. My seizures really destroyed my quality of life, which, in turn, affected my girls' life. Forget the days where I would have more than one, sometimes four or five."Hearn and her husband, Dean, who works as a technician for a marina in Bay Shore, have two daughters, Dana Lyn, 12, and Amber Lee, 8. They are an average American family, but they personify what millions of families face when there is serious, expensive, life-threatening illness, even if they have health insurance.

They may be obliged to fight the insurance establishment for the best care to regain their health or to stay alive while avoiding economic ruin.Hearn doesn't really know where her epilepsy came from. She was physically abused as a child, which she thinks may have contributed to it. She also learned that her forebears four generations back on her mother's side suffered seizures. The literature says epilepsy, which affects more than3 million Americans, is often inherited. With modern drugs, seizures can be minimized and partially controlled, as they were in Hearn's case for some years.

Nevertheless, she drove in the right-hand lane to be able to pull over to the curb, if need be. And she had to be careful in the house around the kids, who were frightened at first but came to know what to do when their mother had a seizure.Eventually, as Hearn wrote, she "went through all the medications only to discover that none completely controlled my seizures," which came more and more frequently - several times a month, then several times a week, then several times a day.In 2005, her neurologist, Dr. Mark Gudesblatt, of South Shore Neurologic Associates in Bay Shore, concluded the only course left was surgery, the removal of that part of the brain that was causing the seizures.

But first she needed a series of sophisticated and expensive tests to pinpoint the problem. And she and Gudesblatt believed the only neurologist at Columbia Presbyterian Hospital qualified to administer the tests was Dr. Lawrence J. Hirsch, a specialist in the Comprehensive Epilepsy Center, the only such facility in New York.But Hearn's HMO, Group Health Inc. (GHI), notified her and Gudesblatt that while Columbia was part of its network, Hirsch was not. The insurer said it would not cover the test unless she found a qualified neurologist within the network. But there weren't any, Hearn said, and Hirsch was the only doctor she and Gudesblatt trusted.

In January 2006, Gudesblatt, who had read a "Gray Matters" column on problems with insurance companies, e-mailed me Hearn's story with her permission, suggesting I might write a column about her dilemma. So I sought a comment from a GHI senior executive, explaining Hearn's problem. Surely, I suggested, GHI could show some flexibility. The executive promised to "look into it" and from then on GHI was more responsive to Hearn and her doctors, but continued to nitpick.The company's officials had repeated questions, as well as suggestions for alternative treatments and different doctors.

But Hearn, along with Gudesblatt's knowledgeable office personnel - Anne Dunn, a registered nurse, and Carol Seidel, who specializes in dealing with insurance issues - parried the questions and objections. At one point, when another test was needed, GHI questioned whether other health conditions might be contributing to Hearn's seizures, or whether she needed stress therapy, and how she was handling her seizures with her children. Gudesblatt wrote me that it is "amazing that I have to beg for authorization, but I do."The final hurdle was to get the doctor whom Hearn and Gudesblatt thought was the best neurosurgeon, Columbia Presbyterian's Dr. Robert R. Goodman, who specializes in such operations but is not in GHI's network.

By this time, Hearn wrote, her seizures were frequent and she waited impatientlyTo its credit and at some cost, GHI ended up footing most of the expense of the tests and two brain operations - perhaps as much as $1 million, said Hearn. She credits her doctors and her own persistence for convincing GHI to do the right thing. A GHI spokeswoman declined a request for comment.While HMOs may insist that patients use providers with whom they have contracts, they are obliged by law to pay for providers outside the network if there is no safe alternative and it is medically necessary.

Readers having similar problems should let me know.Hearn quipped that she now boasts of a "million-dollar brain," adding, "if it's any consolation to GHI, I am seizure free ... the money spent hasn't been for naught." The bills are still coming and she still suffers from mood swings that are among the aftereffects of the surgery, and she and her husband owe several thousand dollars to the hospital, a debt they are slowly paying off.