Gehrig's disease, then ...

Ruth Sheehan, Staff Writer

Doug Phillippi of Carrboro, a talented artist and musician, suffers from Lou Gehrig's disease, which stops the body -- and leaves the mind trapped but intact.
You'd think the disease would be cruel enough.

Nah. Tell a man who can no longer blink his eyes that he doesn't qualify for full prescription benefits.

Better yet, tell him his coverage has been canceled.

Now, that is cruel.

Starting in January, Phillippi's case was turned over to Humana insurance company, which contracts with the state to provide Medicare coverage.

But some Medicare patients, including Phillippi, are also covered by Medicaid -- in his case because of catastrophic illness.

He was diagnosed with the debilitating disease at age 36.

Now he's 47, confined to the bed, unable to move any part of his body. In addition to full-time, round-the-clock nursing care, Phillippi relies on a host of medications, some outrageously expensive, to control his disease and make him more comfortable.

Through the end of 2007, a month's supply of each prescription cost $3, thanks to that combination of Medicare and Medicaid.

But in January, when Phillippi's wife, Stephanie, went to pick up his drugs, the pharmacist handed her a bill nearing $1,000.

Figuring it was some glitch in paperwork, Stephanie Phillippi paid $600 for the most critical of her husband's medications and headed home.

There was a glitch all right.

Humana has refused to acknowledge Doug Phillippi's Medicaid status -- despite calls and faxes from his Medicaid caseworker. Not to mention more than a decade of receiving services.

Four months later, Stephanie Phillippi believes the "glitch" is intentional.

"They've thrown up one roadblock after another," she said. "I'm ready to pull my hair out."

Phillippi, who has weathered many health care horrors during her husband's long decline, finally sought help from advocates she met while lobbying for universal health care at the General Assembly.

Adam Searing and Jack Holtzman of the N.C. Justice Center, who normally focus solely on big- picture issues, got involved.

They spent hours on the phone trying to get Doug Phillippi's Medicaid status straightened out with Humana operators who refused to give their full names and refused to give direct call-back numbers.

To no avail.

Last week, a representative of Humana asked Stephanie Phillippi to fax a power of attorney.

As of Friday, Humana was still "verifying" that document while promising U.S. Rep. David Price's office that the problem has been fixed -- something a call to the pharmacy proved untrue.

On Tuesday afternoon, a spokesman for Humana, Jim Turner, told me the Phillippi situation didn't sound right and promised to call me back today with answers.

But earlier Tuesday, Stephanie Phillippi received a letter from Humana that said her husband's coverage has been canceled.

All she could do was laugh at the absurdity.

Doug Phillippi is running out of medications, his emergency stash long since depleted.

His wife finds herself facing this question: What medicines does my husband absolutely need right now?

Worse yet: What medicines can he do without?


ruth.sheehan@newsobserver.com or (919) 829-4828

http://www.newsobserver.com:80/news/story/1087534.html