Determined to survive, alumna battles for coverage, treatment

Alyssa Olsen's body was killing itself, and her insurance company wasn't willing to stop it.

Olsen, a 24-year-old Seattle University graduate, has common variable immune deficiency, or CVID, a genetic disorder that causes her antibodies to attack the tissue of her organs and leaves her vulnerable to bacteria and viruses. Without treatment, she was given two to three years to live. And treatment—a potentially life-saving bone marrow transplant—costs $400,000.

"I am a 24-year-old in a 90-year-old body," Olsen wrote on a Web site that publicizes her quest for insurance coverage.

Her insurance company, Regence Blue Shield Washington, denied the treatment because it is considered investigational, or not yet proven to have a high rate of success.

Olsen—whose maiden name, Alyssa Stonex, may be more familiar to Seattle U—works at the nonprofit American Diabetes Association. Her husband, Kyle Olsen, is a police officer and a fellow Seattle U graduate. They can't afford to pay for her treatment without insurance and donations.

So Olsen appealed twice to Regence and was rejected both times. When her case was reviewed, she was having diagnostic surgery while Kyle pleaded in front of an insurance panel for her life.

Determined to continue fighting the rejections, Olsen filed an appeal, and some friends helped her contact the media.

It turned out to be an effective strategy.

Within 36 hours of a story about Olsen airing on KOMO 4 News, Regence's medical director, Dr. Joseph Gifford, invited Olsen to his office.

After the KOMO story, the public responded by commenting on the story and calling or e-mailing Regence. Seattle U students and alumni spread the word on Facebook.

Gifford said Regence was flooded with e-mails and calls from people angry about Olsen's rejection.

"He said only two of them dropped the f-bomb," Olsen says.

"It was surreal to watch the reaction," Olsen adds. "To know that so many people actually cared left us speechless."

On Aug. 4 Olsen was told by Regence that coverage of her transplant had been approved in the amount of $200,000.

A devastating prognosis

It wasn't always apparent that Olsen's life was in danger because of her disorder.

In fact, though she had been sick often in her childhood, Olsen wasn't diagnosed with CVID until she was 12 years old. She had already been diagnosed with Chron's disease, caused by the immune system attacking the gastrointestinal tract, seven years earlier.

While CVID is a common disorder, affecting one in every 50,000 people, the severity of Olsen's is uncommon. Her lungs have been hit hardest, operating at half their capacity, and she also has problems with her liver. Her heart beats twice as fast as normal. Olsen's speech is often interrupted by a small cough, usually followed by a polite "excuse me."

Olsen came to Seattle University in 2003 and majored in public affairs. She was active at the school, serving as an orientation adviser and a student government executive.

But in her junior year, Olsen started struggling. She barely had the energy to go to class. By her senior year she was diagnosed with Type I diabetes, too.

Meanwhile, she had "fallen head over heels" for Kyle, who she met at a study group that turned out to be a setup by her friends. They were married in Sept. 2007, shortly after her graduation.

While susceptible to illness, Olsen didn't realize her organs were suffering inside.
"It had been so long that I had been battling all this," she says, "that I was used to being miserable."

When the newlyweds started thinking in February about getting pregnant, they visited some doctors to examine possible complications due to her disorder. Doctors ran tests and delivered a prognosis that "devastated" Olsen: Without treatment, she would be dead before she turned 27.

A long road to recovery

After Regence decided to cover part of Olsen's bone marrow transplant, Olsen was told she would have the procedure Nov. 10. The transplant, while a relatively simple procedure, requires considerable preparation. Afterward, Olsen will have a 100-day recovery in isolation. She will need 24-hour care, and at any sign of sickness, will have to be admitted to the hospital.

Though Regence is partially covering her transplant, Olsen still has $200,000 to pay. She'll be enrolling in the insurance plan offered through her work that does cover preexisting conditions.

Olsen has also received $13,000 in donations from friends, family and strangers.
She feels lucky to have such support, especially amid the health-care debate. As someone with chronic illness whose work involves supporting those who are chronically ill, Olsen says she sees European health-care systems as models for U.S. reform.

"I can't wrap my brain around why Americans think they're so different they need to have private insurers," she says.

"Based on what I've seen, the federal government would do just as good of a job."

Joshua can be reached at editor@su-spectator.com