MULTIPLE SCLEROSIS was diagnosed in 1980, and it slowly chipped away at Bill Budd's life. First he needed a cane. Then a walker. Then a scooter. Now he's a quadriplegic in a wheelchair.

Since that diagnosis nearly two decades ago, Evie Rosen has cared for her husband while championing the cause as a West Coast representative of the National Family Caregivers Association. "Home medical equipment is only as good as the caregiver's request," she says. "Providers need to educate the caregivers, because they make the buying decisions."

A Provider Found Since moving to Santa Rosa, Calif., six years ago, Rosen has been a loyal customer of Empire Hospital Supply, Rohnert Park, Calif. "They deliver, they always get the order right, and they bill direct to Medicare," she says.

Among the products in use are a tilt-in-space power chair, a lift and a standing frame for weight-bearing exercise. Their van has also been converted for wheelchair accessibility.

Rosen has a standing monthly order with Empire for Medicare-reimbursed items such as catheters and leg bags, then supplements it with a cash order. She says caregivers increasingly must purchase additional supplies to offset restrictive reimbursements. "Medicare allows for two leg bags a month," she says. "That's stupid. It will cost them more with all of the infections."

She buys gloves and skin care products in bulk-and deep discounts-at Costco. But she knows where to find personal service. "Not long ago, Empire sent out a man to service Bill's wheelchair, and he filled the tires with air," she said. "As we were driving to a restaurant, we heard a frightening pop and thought someone had shot at us. I stopped the car and discovered one of the wheelchair tires had blown.

"Now Bill's stuck in the van, and it's 6:30 at night, but we called Empire's 24-hour emergency line and the man met us at our house. We used the lift to transfer Bill and exchanged the wheelchair. Before 9 a.m. the next morning, they delivered the chair with the new tire. That's great service."

The Learning Curve Rosen says she learned about medical equipment gradually because her husband's condition progressively deteriorated over the years. A neighbor's 88-year-old husband recently suffered a stroke, and such traumatic events are much harder for the caregiver to deal with, she believes.

"If you've been reasonably healthy, and you haven't dealt with the health care system, there's so much you don't know," she says. "The discharge people give you literature, but you're overwhelmed when you get home. There are so many products people are not aware of."

Rosen and members of her association travel to Medtrade each year to tell providers what caregivers need and expect from them-and the role that the caregiver plays as the patient's gatekeeper. "I know they have so many things to worry about, but they don't see the importance of the person coming into the showroom or calling on the phone," she says. "I'm the customer. Bill doesn't speak to them." HC