When Care is Denied : Bureaucracy and cost controls are the culprits that Californians typically blame when HMOs deny them medical care. Here are two patients’ story: : BILLIE COMER and son RYAN / ‘Experimental’ Problem

“What sport didn’t he play?” Billie Comer asks aloud.

The image in her mind is that of her son, Ryan--16 years old, 6-foot-2, 190 pounds. High school quarterback. School star in baseball, soccer, basketball--before the rare pediatric cancer known as rhabdomyosarcoma attacked his soft muscle tissue and, eventually, killed him.

For Billie Comer, what made matters worse was the refusal of Kaiser Foundation Health Plan, her HMO, to pay for a last-ditch treatment that might have saved Ryan’s life.

“I never expected to have a terminally ill child,” she says today from her home in Pleasanton, outside Oakland. “But that’s when you look to your insurance company to take care of you.”

At issue was a new treatment combining high-dose chemotherapy with autologous bone marrow transplantation. In simple terms, doctors bombard the patient’s stricken body with such powerful drugs that the bone marrow, the source of red blood cells, dies. To restore it, a sample of the patient’s own marrow is taken in advance, stored and re-injected after the chemotherapy is completed.

Bone marrow transplants are controversial in part because they are expensive--the treatment costs more than $100,000. Although proponents say the technique has been used successfully to treat some breast cancers, its effectiveness against other cancers is less clear. Accordingly, it tends to be classified by HMOs and health insurers as “experimental”--a category of treatment that most refuse to cover.

What irked Comer, she says, is that Kaiser never even informed her that the therapy existed; she learned of it from reading an article in the Ladies Home Journal in October, 1990.

When she asked why her doctors had not told her about bone marrow transplants, “they said, ‘You don’t want this, it’s a horrible experience, the death rate is high, it’s experimental,’ ” Comer recalled.

But one reason the treatment’s efficacy against some rare cancers remains uncertain is that there are too few cases to create a clinically valid sample--a situation worsened by the refusal of HMOs and insurers to pay for procedures. Given the rarity of Ryan’s disease, virtually any treatment for it would have been “experimental.”

“The number of patients in the U.S. is always going to be de minimus because of the scarcity of patients at his age,” said Gary L. Tysch, Comer’s lawyer.

Kaiser officials say they recognize that many experimental treatments--including bone marrow transplants--may be beneficial for patients with serious diseases, and they are moving away from a blanket denial of coverage in such cases.

“We recognize there’s not sound data” under many circumstances, said Dr. Ian Leverton, chief of Kaiser’s committee on new technologies. “Some patients actually suffer more than they gain, but some might gain” from an experimental course, he added.

Accordingly, Leverton said, Kaiser now tries to make its decision on covering an experimental therapy after consultations with the patient, his or her primary care physician and specialist, and, in some cases, an independent ombudsman.

“I don’t know how to do it ‘right,’ ” Leverton said. “I don’t think that covering everything is right. But not covering anything isn’t right either.”

In Ryan Comer’s case, Kaiser turned down the family’s request that it pay for a bone marrow transplant although it had paid for other experimental treatments that had not worked. Billie Comer raised the money for the treatment herself and flew with her son to Minneapolis, where University of Minnesota doctors were using it to treat pediatric cancer cases.

By then, Ryan’s cancer was too advanced; four years ago this month, he died.

“We knew going in that Ryan’s chances were slim,” Billie Comer said.

But she says that Kaiser’s resistance to providing the treatment earlier means no one will ever know if it would have been successful.

“You feel that this big corporation chose him to die,” she said. “To me, if a life is saved, that’s worth all the money in the world.”