Suburban sufferer of immune deficiency fights for insurance coverage

The hassle of driving to St. Charles for a six-hour intravenous infusion every six weeks sounds pretty good to Mary Ellen Karp these days. The 65-year-old retired McHenry kindergarten teacher, who still does some substitute work, suffers from an immune deficiency.

Her insurance plan used to pay for that time-consuming immunoglobulin replacement therapy, which provided her with the antibodies she needs to stay healthy. In recent years, it even paid for a weekly dose that she could administer to herself at home through three tiny needles she injected into her stomach. But she hasn't had a treatment since January because the insurance provider Cigna decided that her therapy no longer was a medical necessity.

"I get a sinus infection and my body can't fight it off, so I end up with bronchitis or pneumonia," says Karp, who last had pneumonia in August. "Sometimes, I think I should just stop subbing, but I truly miss the kids."

Karp has one of the more than 200 rare disorders that fall under the primary immune deficiency umbrella, and many of them are treated with immunoglobulin replacement therapy, which generally is covered by Medicare.

"Most insurance plans cover this therapy," says Emily Hovermale, director of public policy for the Immune Deficiency Foundation, a not-for-profit charity and advocacy group for the estimated 250,000 Americans with some form of immune deficiency. "People can live normal healthy lives with immunoglobulin replacement therapy."

It wasn't always that way. Born in 1971 with severe combined immunodeficiency, David Vetter lived in a plastic bubble to protect him from germs that would have killed him. While he died at age 12, his situation inspired a 1976 made-for-TV movie title "Boy in the Plastic Bubble," which starred John Travolta, and a 2001 comedy film called "Bubble Boy," both of which had happy endings.

A half-century ago, children born with severe immunity issues died as infants. Now bone marrow transplants generally can help them live healthy, normal lives.

"People don't live in bubbles anymore," Hovermale says. "We don't often say 'cured,' but if they get [diagnosed] in the first 3½ months of life, there is a 94 percent survival rate."

Illinois is one of 25 states that automatically test newborns for the disorder. The inherited malfunction of the immune system is something people are born with, but less severe cases often go undiagnosed and untreated for years. Karp says she was diagnosed a decade ago at DuKane Allergy Asthma Associates in St. Charles, and is fighting to resume her therapy coverage.

"We've been fighting her appeal," says Carol Ernst, a registered nurse and director of consumer advocacy with Bio Rx, a national company that had been providing her therapy. "She was on it and it was proved to be effective. It's mind-boggling why they won't cover it now."

While Karp says her appeal was rejected again last week, that decision is still being appealed.

"We encourage any customer not satisfied with a coverage determination to pursue their entire appeal rights," says a Cigna spokeswoman.

That process can lead to a review by an independent physician experienced in the treatment, who studies the case and issues a binding ruling.

People sometimes dismiss a person with immune issues merely "as someone who just gets sick frequently," says Hovermale, who says the Immune Deficiency Foundation works to raise awareness among doctors as well as the public. The group negotiates with insurance companies often and recently helped expand the coverage offered by Blue Cross Blue Shield in Illinois and other states, Hovermale adds.

"It's like a diabetic taking insulin or somebody taking blood-pressure medicine," Ernst says of the immunoglobulin replacement therapy. "It should be covered."

Karp says she's looked into paying for the regimen herself but discovered that a treatment every two months would cost more than she makes through her pension. She's hoping the advocates working on her case will get her treatment restored.

"It made a world of difference," Karp says. "I'd hardly ever get sick."