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California and the West

Billy's Bills

When Son Was Denied a Costly New Drug, a Mother Fought Back

October 02, 1997|KATE FOLMAR | TIMES STAFF WRITER

SIMI VALLEY — Even before her young son was found to have leukemia more than two years ago, Angela Hale was a scrapper.

A mail carrier and union shop steward, Hale works two jobs, six days a week, to help pay for her son Billy's extensive medical treatments.

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 'do to that of TV hunk 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.

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 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 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's the period when a leukemia patient's immune system is so battered that a simple fungal infection or 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."

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's not a good enough explanation for Angela Hale.

Although grateful that her son is receiving Neupogen shots now, she worries about 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 assertive--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 can cost $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.

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

Franklin first prescribed Neupogen when Billy's 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 parents Angela and Dan Hale, 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," Angela Hale said. "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 to limit Billy's exposure to infection.

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.

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