Anita Creamer: Not the ending, but happiness to report

Victoria Chavez knows she won't be able to deal with her luggage at the airport. So she's already shipped two months' worth of clothes to Chicago, where she is to enter a pioneering autologous stem cell program next week to treat the progressive systemic scleroderma that's robbing her of breath and life.

She's arranged for oxygen to be available for her on the plane, at the airport when she arrives and at her hotel. And she's lined up an aunt from Oregon, Sylvia Zamora, to be her caregiver during her treatment at Northwestern Memorial Hospital.

"What a nightmare to get all this different stuff taken care of," says Chavez, 46 and the mother of a 17-year-old daughter.

But one of her worst nightmares is over.

On March 12, she learned that California's Department of Managed Health Care has overturned previous refusals by her health care provider, Kaiser Permanente, to cover the stem cell transplant.

The decision, which can't be appealed, compels Kaiser to pay for her treatment.

"I was so prepared for a denial," says Chavez. "I couldn't wrap my head around all this for a few days."

As you learned here Feb. 24, she and her husband, Bob Meindl, had mortgaged their Cottage Park house to pay for her treatment, and they were raising more funds through the National Foundation for Transplants.

Despite their struggle to come up with the $300,000 needed to pay for her treatment, they were lucky, really, because they had resources to tap and family and friends willing to help them.

Some people don't.

In her independent medical review, a panel of doctors unanimously agreed that the stem cell treatment – though still in the clinical trial stage – is likely to be more beneficial to Chavez than any standard available therapy.

In separate written decisions, the three panel members cited the severe deterioration of her lung capacity as her disease has progressed. And all three mentioned her Kaiser rheumatologist's previous letter of support for the stem cell transplant.

"Really, what they're saying is that the standard available treatments for this irreversible condition are very inadequate," says DMHC Director Cindy Ehnes.

"So experimental treatments that have promising clinical results are sufficiently valid and credible. This particular situation warrants the availability of this treatment."

All Californians enrolled in health insurance plans have the right to seek binding second opinions through the DMHC – although, as Ehnes says, the public seems largely unaware of that right.

"We feel really good when we're able to help families like this," she says.

Now Chavez is able to concentrate on what matters most: getting through the grueling treatment, which involves killing her immune system with massive doses of chemotherapy before her own stem cells can be transplanted.

"People get little infections and fevers, and you have to go on antibiotics," she says. "I'm a little worried, but the doctors say they'll handle it."

These days, she's spending a lot of time online making hotel reservations for relatives who want to visit her in Chicago – and posting her thoughts on her blog, www.victoriasmiracle.blogspot.com.

"Maybe my blog can help other people out there who are trying to learn about this," she says.

Chavez plans to use the $12,600 raised by her fundraising committee to pay for her living expenses in Chicago.

And she and Meindl plan to re-apply to their home loan the $90,000 in equity they've taken out of their house.

"It cost us $8,000 to do the refinance," she says. "My husband was like, 'They put us through all this.'

"But this is a good thing."

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.