Speaking truth to the power of insurers…

But don’t feel sorry for Penelope. That’s not what she’s after today at Tuesday’s Health Care for America Now protest in Sacramento. Today, she’s taking on the role of an articulate, proud, sign-waiving activist for real, meaningful health care reform in one of HCAN’s rallies against the insurance industry’s heavy-handed influence on health reform in Washington.

Hundreds of people supporting strong health care reform showed up for protests and “die-ins” in Sacramento, San Francisco, Los Angeles, Santa Ana and San Diego. Some even staged a “crime scene” with actors and yellow tape (saying “It’s a crime to deny care”) to illustrate the raw mortality statistics: In the U.S., one uninsured person dies every 12 minutes, and 45,000 uninsured die every year.

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.

But Penelope’s mother found a doctor who believed she’d improve and wanted to make her better. So in a way, Penelope illustrates what happens when the insurance companies don’t win after deeming patients’ medical conditions too grave (and expensive) to treat.

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.

She needs a surgically implanted cerebral shunt to help the fluid drain back down and regular monitoring to make sure it is working properly. Such shunts are a medical device not much improved since their development in the 1960s, and about half of all shunts fail within two years, requiring further surgery to replace them.

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.”