Every breath is precious

From the California statehouse to the presidential race, health care reform is a hot political issue. But for 46-year-old Victoria Chavez, the need for reform isn't political.

It's a matter of life and death.

She's fighting her health insurance company for the treatment that provides her only real hope for long-term survival.

Like so many other desperately ill people before her, she's trying to scrape together funds for her care – asking strangers for help and refinancing the Cottage Park house she shares with her husband and 17-year-old daughter.

She spends most of her time at home, hooked up to her oxygen tank. Every breath is precious.

Chavez was diagnosed in 2003 with systemic scleroderma, an autoimmune disease affecting up to 300,000 Americans in which the body produces too much collagen. In her case, the illness is creating what amounts to a tough inner shell of scar tissue in her lungs, hardening them, gradually reducing her ability to breathe.

Doctors say the prognosis for people like her – patients with progressive systemic scleroderma affecting the lungs – is limited.

"I don't want to die," says Chavez. "You wait, and you suffocate."

The disease is irreversible, although chemotherapy can slow its progression. It's also incurable under current medical protocols, but Chavez has been accepted into a groundbreaking autologous stem cell transplant program at Chicago's Northwestern Memorial Hospital that shows promise in treating autoimmune diseases.

Her treatment there begins March 24.

But her health care provider, Kaiser Permanente, has repeatedly denied her request for coverage of the transplant, which will cost $160,000 to $300,000.

In a prepared statement, Kaiser Permanente officials say their doctors don't think the transplant procedure is appropriate for Chavez.

"Our physicians will continue to seek out and make available alternative treatment options that they believe would benefit Ms. Chavez," the Kaiser statement says. "This could include other clinical trials that may be more appropriate for her condition."

Victoria Chavez doesn't have time to wait. So she's raising the money herself.

Good up to now

Unlike 50 million Americans, Chavez has medical coverage – good coverage. Her 71-year-old husband, Bob Meindl, is a retired California State University, Sacramento, professor who's been a Kaiser Permanente client for decades. Chavez has been a Kaiser patient for the past 15 years.

When Meindl was diagnosed with bladder and kidney cancer last fall, he says, Kaiser provided excellent care. Likewise, Chavez says her Kaiser doctors have been caring and professional. And Kaiser readily covers the 10 medications she takes to help her survive, at a cost that Meindl estimates at more than $40,000 a year.

But according to Harvard Medical School research, half of bankruptcies in this country result from high medical bills – and three-fourths of those cases involve people with health insurance.

Last year's "Sicko," up for a best documentary Oscar tonight, tapped into Americans' growing dissatisfaction with an insurance industry that costs them a lot yet routinely denies them care in the most drastic situations.

"I saw 'Sicko,' " says Chavez, "and I thought, 'Where was I when Michael Moore was recruiting stories for that movie?' "

Fair or not, it's easy to believe that insurance companies sometimes gamble with our lives, waiting for the desperately ill to die instead of paying for the treatments that can save them.

So many in dire straits

Someone you know has probably been in the same situation. The Bee constantly receives requests from families who can't afford the treatment that will save the lives of ailing loved ones.

As I was reporting this story, for example, I received an e-mail about a boy named Joseph Quant, a Natomas first-grader diagnosed with inoperable brain cancer. His medical insurance doesn't cover all the costs of his care, and the family is looking for help.

About the writer:

• Anita Creamer's column appears Wednesdays, Fridays and Sundays in Scene. Reach her at (916) 321-1136 or acreamer@sacbee.com. Back columns: www.sacbee.com/creamer.