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Basu: Fighting for life, finding financial ruin
By REKHA BASU
REGISTER COLUMNIST


December 1, 2006
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In October, Rose Stark finally "went bonkers."

Physically exhausted, emotionally and financially drained, the 56-year-old was already looking at a future with no respite or hope. Then she got word her health plan wouldn't cover an overnight nurse for her severely disabled husband.

It was the last straw.

Stark's husband, Chris, is in an advanced stage of ALS, or amyotrophic lateral sclerosis. The degenerative disease saps the body's muscle strength but leaves the mind intact. Confined mostly to bed or to a powered wheelchair, Chris can't walk, eat or breathe on his own. His arms are useless. He uses a catheter. And as of this spring, the 57-year-old is on a ventilator, requiring round-the-clock care to suction the secretions that collect in his lungs.

Rose was working all day and then caring for her husband all night, an equation that after a while didn't compute. Her insurance company, Wellmark Blue Cross and Blue Shield (which is also her employer), had already stretched its normal coverage to pay for a daytime nurse, but drew the line at covering nights.

So Rose, who is strong and solid and always ready with a quip or a hug, was suddenly unable to function. "I just fell apart and was sobbing," she said. "I couldn't think. I was just a total wreck."

She needed to go on short-term disability herself.

ALS is a disease that can easily break your spirit, your strength, your bank account and your heart. And just when you're at the end of your rope emotionally and physically, you also have to negotiate baffling mountains of paperwork and regulations and battle insurers and the government.

Chris was diagnosed three years ago, but has been on a ventilator only since May. Without it, he'd be dead. Most patients live only two to five years after diagnosis. With it, he could last months or years more.

But most insurance plans won't pay for more than an hour or two of skilled nursing care a day at home, and most hospices won't admit people on ventilators.

Wellmark would pay for Chris to be in a skilled nursing facility, but there's only one in the Des Moines area that takes patients on vents - and only three beds designated for them. It has a waiting list. And with one nurse to 11 patients, it couldn't meet Chris' needs anyway, Rose says. He can't call out for help, so he just clicks his tongue. Someone has to be there to hear.

Rose could quit her job to care for her husband. But then no one would be earning.

When she finally cracked under the stress, a doctor put her on Prozac and sleeping pills. But what good are those if you don't have the time to sleep? So she took out a second mortgage on their home and cashed in some of her IRA to pay the $43 an hour for an overnight nurse.

Rose is a secretary, and Chris was a custodian. Despite being of modest means, they planned for the future, with health insurance and retirement accounts. Now those are working against them. There is help available from the state, either through Medicaid (Title XIX) or something called the Physical Disability Waiver from the Iowa Department of Human Services. But not only has Rose been told she'll have to wait at least eight months for either, her IRA disqualifies her. She'll need to wipe out some assets before she can qualify. Even then, she learned she could be required to repay the state after her husband's death.

Social Security benefits, at least, are now being expedited for people with ALS. Chris is on disability. But other parts of the system also need to adapt.

Most of the talk about the health-care crisis centers on the uninsured. But even with insurance, a health crisis of this magnitude can be financially crippling. With a cure or even treatment for ALS still a long way off, it's basic day-to-day maintenance that can bankrupt you.

Politicians will make an ideological crusade out of keeping a severely handicapped person like Terri Schiavo alive against her apparent wishes. But here's Chris Stark, who, even in his severely compromised state, chose life. And where did that leave him? In a financial free-fall, his wife at the end of her resources.

So far, no one is campaigning at their bedside.


Tell us about it
Rekha Basu writes about human rights, civil liberties, foreign affairs and other issues. She wants to read your comments and suggestions about this column.

REKHA BASU can be reached at rbasu@dmreg.com or (515) 284-8584.

http://desmoinesregister.com/apps/pb...5/1035/OPINION