Health Net Gives a Boy Access to Specialist Care After Lawsuit

With their 4-year-old son’s life at stake, Mark and Kimberly Zembsch filed suit this week against Health Net, contending that the Woodland Hills-based HMO had refused to let the youngster see the one doctor they believe can treat his rare condition.

Jack suffers from metatrophic dysplasia, which causes the spine to twist as its grows, damaging internal organs. The boy lives in Moraga, east of Oakland, but the doctor his parents consider an expert in the disease practices in Delaware.

A spokesman for Health Net, California’s third-largest for-profit HMO, said the company had believed that there were local doctors who could perform the surgeries Jack needed.

On Tuesday, the day after the suit was filed amid unflattering news coverage, Health Net said it had learned that local doctors could not handle the case and therefore it would grant the family’s long-standing request for a referral.

“Basically our focus has been on trying to get Jack the care he needs,” said Dr. Gordon Yenokida, chief medical officer for Health Net. “A rare disease implies that the treatments are rare, but sometimes they are standard.”

The case illustrates how the managed-care model of healthcare -- which offers subscribers relatively low premiums in exchange for access to only a limited number of doctors -- could make it difficult for patients who need specialized care. Typically such plans do not allow for care by so-called out-of-network specialists without the insurer’s approval.

Glenn Melnick, a Rand Corp. economist and USC professor of healthcare finance, said the Zembsch case was interesting because it brought up the issue of out-of-network care in a public way.

“Usually, they handle these things quietly,” he said.

HMO agreements typically require patients to settle complaints confidentially, through regulatory agencies or arbitration. But the Zembsch case became public because under federal law, HMO members who are employed by a church or government -- Mark Zembsch is a deputy city attorney for the city of Berkeley -- can seek remedy through the court system.

In their suit, the Bay Area couple say Jack’s spine is twisting at severe and abnormal angles as he grows. He needs surgery as soon as possible to prevent damage to his spinal cord, heart and lungs. He is expected to have 10 to 20 surgeries over his lifetime and without proper care could die young.

“It’s been so difficult -- it’s a full-time job just staying on top of his medical needs,” Kimberly Zembsch said. “To deal with this from Health Net is like a slap in the face.”

The suit alleges that Health Net repeatedly denied the family’s requests over the last 14 months for permission to see Dr. William Mackenzie, a Delaware specialist in metatrophic dysplasia. Filed in Alameda County Superior Court, the suit also seeks punitive damages.

The suit contends that under Health Net’s policy, “in the event that treatment by a specialist is necessary, the member is entitled to a standing referral to that specialist.”

The family says both Jack’s pediatrician and the head of children’s orthopedics at UC San Francisco referred him to Mackenzie.

“Jack’s case dramatizes what is wrong with the HMO system,” said their attorney, Arnold Levinson of San Francisco. “Health Net has simply stonewalled and ignored Jack’s repeated request for care for the simple reason that they don’t want to pay for it.”

But Health Net spokesman Brad Kieffer said Health Net, until Tuesday, believed that Jack could be treated in San Francisco.

“This has never been about denying care,” Kieffer said. “It’s always been about providing the gold standard of care that Jack needs.”

Jeffrey Miles, former president of the California Assn. of Health Underwriters, an insurance company trade group, said that insurers routinely refer patients out of their networks and that the Zembsch case was rare.

“They don’t want the bad publicity from these things,” he said. “The carriers are just trying to deliver a valued service to the client.”

But others with rare diseases often face similar battles with their HMOs, said Mary Dunkle, a spokeswoman for the Connecticut-based National Organization for Rare Disorders.

“This is certainly something we hear about,” she said, adding that her group had set up an assistance program to help patients with rare diseases pay for expensive medication.

Oblivious to the legal battle being waged on his behalf, Jack is an active boy who likes playing with friends at preschool, playing ball and watching SpongeBob SquarePants. Although he has “physical challenges, he inspires optimism in everyone he meets” with his sunny outlook, Mark Zembsch said.

Jack’s parents said they hoped his case would help others with rare diseases.

“Our first concern is for Jack,” his mother said. “But if Jack can give a voice to children who are in similar situations, we are glad to help.”