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Joanne Kocourek is one of these warriors. A registered nurse who manages clinical research for a large hospital in Chicago, Illinois, she is exhausted, frustrated, "financially drained," at wit's end--but persevering. The family's former health plan denied vital services and constantly threatened to reduce others for Kristen, the Kocoureks' 9-year-old daughter who is adopted. Kristen has congenital central hypoventilation syndrome, which causes breathing problems, and mitochondrial cytopathy, an inherited metabolic disorder in which the body cannot generate enough cellular energy. Her sister, Annalies, 13, also has mitochondrial cytopathy. Of the two, Kristen requires more care. A private nurse spends weeknights at the family's home so Joanne and her husband, Tom, can sleep. On weekends, Joanne provides most of the care for Kristen, including intermittent ventilation. The fourth-grader also needs megadose vitamin supplements. About four years ago, their former health plan pressured the Kocoureks to reduce in-home nursing care to just three nights a week S an effort they successfully fought with the help of their doctors. Their current health plan has pushed for institutional care, which the family maintains would be just as expensive, if not more so, than in-home care: $7,000 to $9,000 per month. The Kocoureks also believe that institutional care would not be the best arrangement in terms of Kristen's quality of life. Moreover, says Joanne Kocourek, the health plan won't pay for the costly vitamin supplements because lower dose--and less expensive--supplements are available over the counter. It also will not pay for the physical or occupational therapy that clinicians believe would help develop both Kristen's and Annalies's delayed motor skills, arguing that the children's parents are responsible for such therapy. There are other snags that the family has run into. One is the insurer's refusal to commit itself in writing when denying or granting coverage. The other is the family's financial status--it is "too well off" to qualify for public aid, but they do not have enough money to pay many medical bills out of pocket. "It has been a battle all the way," Joanne Kocourek says with a sigh.
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