It’s heart-wrenching to see the long scars, some still deep red, crisscrossing the scalp of 19-year-old Penelope DeMeerleer, who has half a head of thick blond hair and the other half practically mapping out her medical history of 44 brain surgeries.
In Sacramento, across from the State Capitol, Penelope doesn’t play the part of a victim. Except for the dire financial consequences, hers is a story of triumph over insurance executives who tried to screen her out as a hopeless, helpless case – in effect, rationing care by insisting she’d never be able to walk or talk and would likely live life “as a vegetable,” she says.
Penelope was born with a rare congenital disease called hydrocephalus, characterized by the inability of spinal fluids to drain properly. The way it usually works is that spinal fluid moves up the spine, to the brain, and drains back down. In Penelope’s case, the fluid travels up to the brain, and gathers there, causing swelling.
In the last quarter-century, the survival rate for people with Penelope’s condition has improved dramatically, to 95 percent. Intellectual disabilities related to hydrocephalus have dropped significantly – by half. Penelope is a bright, well-spoken young woman who understands and accepts her need for continued care, but she does not accept the financial burden insurance companies put on her family.
Holding a hand-lettered sign that said, “We have insurance and jobs and we still can’t afford our co-pays!” Penelope and her mother said her insurance cost $700 a month when she was a baby, and then went up to $1,200 a month, roughly equal to a mortgage payment.
Penelope’s mother, Pam Tuohy-Novinsky, says: “We pay our co-pays, we pay taxes, we are middle-class, hard-working people. But for 19 years, we’ve been getting deeper in debt to insurance companies just to keep her alive.”
And Tuohy-Novinsky’s convinced that keeping Penelope alive was not what the insurance company had in mind. “In the beginning, Blue Cross-Blue Shield said they expected her to die. They seemed to want her to die…,” Tuohy-Novinsky said, as other activists milled around with signs, buttons, petitions and banners demanding insurance reform. “I believe health care is a civil right — and this is a civil rights protest.”