Mother’s Might

Even before her young son was diagnosed with leukemia more than two years ago, Angela Hale was a scrapper.

A petite mail carrier and union shop steward, Hale works two jobs, six days a week, to help pay for son Billy’s extensive medical treatments. Lately, she has acquainted herself with the minutia of pediatric oncology.

When intensive chemotherapy gives Billy--who turns 8 today--bleeding sores in his mouth, searing headaches and intense nausea, Angela Hale holds his hand. When a medicine left Billy paralyzed for months, she lugged his 150-pound wheelchair around and cheered him through physical therapy. And when Billy’s downy blond curls fell out and grew back dull and choppy, she likened the new do to that of TV star George Clooney.

So when Billy’s health maintenance organization refused to pay for his Neupogen--a vital infection-fighting drug--for a month, Angela Hale battled.

With the unqualified support of her husband, Dan Hale, she called her legislators. She called a child abuse hotline. She called her insurer, Blue Shield of California, and called again. And she called the newspaper.

“I’m not a stupid person,” said Angela Hale, 42. “I can’t sit by and ignore his lack of treatment. I can’t take away his pain. I can’t cure him. All I can do is fight for him.”

After three weeks of his mother’s fighting, Billy Hale is once again receiving his Neupogen--the Amgen Inc. drug used to stimulate the production of white blood cells after intensive chemotherapy. That is the period when a leukemia patient’s immune system is so battered that a simple fungal infection or a bout of pneumonia can prove fatal.

Through a spokeswoman, Blue Shield refused to discuss Billy’s situation, citing patient confidentiality laws.

“It’s illegal for me to discuss specifics of any patient’s case,” said spokeswoman Lisa Citron. “We are providing the patient with everything that is medically necessary according to community standards.”

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Billy’s hematologist-oncologist attributes the temporary denial of Neupogen to the insurer’s inflexible guidelines, a paperwork delay and the relative newness of the drug. In the era of managed care, Dr. Janet Franklin said, she has had similar experiences with other health-care providers.

“It’s like Russian roulette,” she said. “You never know what insurance company is going to give you what problems with what medicine what week.”

That explanation isn’t good enough for Angela Hale.

While grateful that her son is receiving Neupogen shots now, she worries whether the pricey drug will be covered after future chemotherapy treatments and an eventual bone marrow transplant.

And she worries whether other parents--who aren’t middle class, white, high school educated and feisty--are getting a similar runaround to the detriment of their children’s health.

“If they’re doing this to me,” she said, “they’ve got to be doing this to other parents, who may not know to fight back.”

Given Neupogen’s cost, the drug does receive scrutiny from insurers, said David Kaye, the associate director of communications for Newbury Park-based Amgen. A week to 10 days worth of the drug is the typical treatment after chemotherapy and it can cost from $1,100 to $1,800. If a patient receives, say, six chemotherapy cycles in a year, the cost can total more than $10,000.

In fact, Amgen has set up a hotline staffed by reimbursement specialists specifically to deal with insurance difficulties.

“We work with health-care providers, doctors, nurses and patients in this day of managed care,” Kaye said. “There are a lot of hurdles to get bills paid.”

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In the beginning, there appeared to be no hurdles in Billy’s way.

His oncologist, Franklin, first prescribed Neupogen when his leukemia relapsed in mid-April after 18 months of remission. The relapse meant two things--Billy’s leukemia was more virulent than usual, and his “cure rate” was slashed to about 30% to 40%.

After his chemotherapy in early May, a small batch of shots arrived at Billy’s home in Simi Valley. Each day for about a week, Angela Hale would gingerly prod her son’s achy body for a good vein and shoot the drug into him. The stinging made the normally good-tempered boy wail with pain.

At home--where he lives with his parents and brothers, Jake, 5, and Bryan, 11, Billy still winces at the memory.

“The shots are yucky,” he said with a small shiver, before returning his attention to the video game “Doom II.”

“We hate these shots,” said Angela Hale. “The first time I gave it to him, I closed my eyes. It’s just that they work.”

Within days of first receiving the Neupogen, Billy’s immune system bounced back. His white blood cell count shot up. He could return to school--which is held at his grandmother’s house in Tarzana with the help of a Los Angeles Unified teacher, to limit Billy’s exposure to infection.

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This intensive treatment regimen--preparation for an eventual bone marrow transplant--continued for months. Meanwhile, a search for a bone marrow donor outside Billy’s family found a near perfect match this summer.

Things were going well until late August, when a Blue Shield bill arrived denying payments for Neupogen.

It read, in part, “The information submitted does not document the necessity of this service.” Without Neupogen to help his immune system, Billy fell a few weeks behind in his treatment schedule.

And he was wide open for infection.

“I just don’t understand the phrase, ‘not a medical necessity’ in this case,” Angela Hale said. “I’m not asking for a face lift, I’m asking for medicine so he can get better.”

The battle for Neupogen soon began. Angela Hale barraged the HMO with phone calls. With the help of her labor union, she considered picketing Blue Shield. Franklin placed numerous calls and sent a packet of information about Neupogen’s use in pediatric oncology to the insurer.

Though Blue Shield declined to discuss the particulars of Billy’s case, the company’s associate medical director for the Bay Area said much thought goes into the determination of what is and is not medically necessary.

Committees of experienced doctors and experts in pharmacology develop treatment guidelines based on the current research, according to Dr. Edward Lukawski. Determinations of what treatments are reimbursed are based on those guidelines and a particular patient’s policy. In some gray areas, the patient’s primary physician is called for guidance.

And some treatments are not covered.

“When we deny [a treatment], we do it responsibly,” he said. “When we do deny, we deny with the full understanding that patients have the right to appeal.”

Eventually, the Hales’ appeal was successful. Late last week, Billy began chemotherapy again. When it was finished, the Neupogen was available.

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The gap-toothed third-grader is again doing what he loves: playing Nintendo, following the Dallas Cowboys and professional wrestling, teasing his brothers and nagging his parents for a dog.

By New Year’s, he could receive his bone marrow transfusion. It will be painful, but worth it, he said.

“I would like to get this thing out of here,” Billy said, pointing to his “main line”--a catheter that is surgically placed in his chest for use in chemotherapy. “First thing, I would jump in the pool. Second thing, I’d go out and eat a million-bazillion tons of lobster, Chinese food and beef jerky.”

His parents also look forward to such a day.

“The bone-marrow transplant is ultimately where we’re going,” said his 42-year-old father. “And we don’t need the insurance company getting in the middle and messing this up.”

Should that happen, though, the Hales say they are ready to fight.