At 13, David Denney's body functions like that of a baby. Severe brain damage halted his motor development at 4 months.
Unable to walk, sit up, speak or even eat by mouth, David is cared for by a licensed vocational nurse who feeds him formula through a stomach tube, watching closely in case he retches.
Blue Cross of California, the family's health plan, paid for the nurse for most of David's life at a cost of about $1,200 a week.Then about two years ago, the company decided that David didn't need a nurse anymore -- contradicting the opinions of two of David's physicians -- and it stopped paying.
"He's fragile, very fragile," said the boy's mother, Amparo Denney of Torrance. "It's not humanly possible to do this without help."
As a matter of course, insurers scrutinize what physicians order -- watching for unnecessary drugs, questionable treatments, experimental and unproven therapies, unwarranted surgery.
The extent of treatment denials by insurers is unknown. But patients are contesting them more than ever.
A small fraction of the 18 million Californians in health plans dispute denials. But the number of such disputes involving the state's five biggest plans, including Blue Cross, nearly doubled since 2001 to 1,014 last year, according to statistics compiled by the state Department of Managed Health Care.
Although there is wide variation among the state's biggest health plans, overall about a third of the 4,259 patients who sought reviews over the six-year period succeeded in overturning denials, according to a Times analysis of the data.
Many people who are denied treatment never contest it because they are unaware that they can or are too caught up in their medical crises to bother. As a result, some denials go unnoticed; some draw headlines.
A much-publicized pair of decisions this month by insurer Cigna HealthCare to deny and then permit a liver transplant for a 17-year-old girl from Northridge drew much criticism after she died hours later.
Gerald Denney said he was so frustrated by his inability to persuade Blue Cross to restore his son's nursing coverage that he decided to hire a lawyer rather than contest it through a regulator's independent medical review process.
The family sued Blue Cross this year, seeking to reverse its action. The insurer opted to go to arbitration rather than to court, as was allowed under the Denneys' policy.
Shannon Troughton, a spokeswoman for WellPoint Inc., the insurer's Indianapolis-based parent company, declined to discuss the case while it is in arbitration.
But Troughton said the overall increase in treatment denial disputes reflected a greater recognition within the insurance industry of the importance of independent medical reviews. She said it also showed diligence by Blue Cross in informing members of their review and appeal rights.
In addition, Troughton said, Blue Cross has a team that routinely examines developments in medical science, such as new drugs and surgical procedures, to determine what care is state-of-the-art and should be provided to members. The Medical Policy and Technology Assessment Committee is made up of physicians who work for Blue Cross, as well as doctors who treat patients, and it takes input from experts, she said.
"We review our medical policies annually to help ensure the most up-to-date scientific evidence is reflected in our policy positions," Troughton said. "We continue to monitor and review treatments available to members and update policies as appropriate."
For insurers, the scrutiny is part of the process that keeps a lid on costs and helps safeguard against ineffective, inappropriate and even unsafe treatment.
But for some patients, denials can come as a shock and create great hardship, often at an already tough time.
Many people end up paying for rejected treatments themselves, often going into debt. Some go without the treatment. Others qualify for public programs, and the costs are shifted onto taxpayers.
That's what happened with David Denney.
Desperate for help and fearful that David's condition would rapidly deteriorate without the watchful eye and skilled care of a nurse, the family turned to Medi-Cal. The state of California's program for the poor and disabled stepped in and has paid for 40 hours of nursing care a week ever since.
Because Gerald Denney is a self-employed mortgage broker, the family buys its own health coverage, paying a $2,907 quarterly premium for four, including David's older sister.
The Denneys have continued to pay their premiums, and Blue Cross has continued to cover the family, as well as most aspects of David's medical care, such as physician visits, prescription medications and hospitalizations.
The family said they were happy with the service and coverage Blue Cross provided -- including an expensive wheelchair specially adapted for David -- until they were denied the nursing care they believe is necessary to their son's well-being.
"That's why we got insurance," Gerald Denney said.
A rare disorder
David Denney was apparently healthy when he was born Sept. 1, 1994. A videotape around his first Christmas shows him holding up his head and smiling.
But within weeks, his body control deteriorated rapidly. He stopped nursing and cried nonstop.
After his parents took him to several specialists, a genetic test that took three months to complete determined that David had glutaric acidemia Type 1. The rare disorder allows harmful levels of amino acids to build up in the blood. It can cause seizures, brain damage, coma and death.
David still smiles. But he lost the ability to hold up his head and can't do anything for himself.
His mother believes he can signal "yes" by nudging her with his right arm and "no" with his left. But she's not sure.
To prevent David's muscles from atrophying, the nurse who has cared for him since he was 2 gives him regular exercise, moving his arms and legs, which alternate between rag-doll floppiness and stiff twitching.
David also has trouble swallowing, so even a trip to a doctor can become life-threatening. While his mother drives, his nurse rides in back with David, prepared to intervene if he chokes on his own saliva.
She also monitors David's frequent seizures, administering a cocktail of drugs in an effort to keep them at bay. If David is in a seizure for too long, paramedics must be called to administer oxygen and he must be given a Valium suppository to try to bring the seizure under control until they arrive.
"This is not something you'd want a baby sitter to do," Gerald Denney said as he rolled David's stiff body onto one side to dress him in a clean T-shirt after he threw up much of the evening's formula. "He needs a nurse."
The description of David's care is based on observations and interviews with the Denneys and David's nurse, as well as the lawsuit and exhibits filed with it, including doctors' evaluations and Blue Cross' letters to the Denneys. The company declined to discuss David's care and its view of the case with The Times even though his parents said they would sign a form waiving their privacy rights and giving Blue Cross permission to do so.
According to the suit filed in Los Angeles County Superior Court, Blue Cross approved a home nurse for David about a year after his diagnosis and confirmed that decision at least once a year.
For example, in a Jan. 24, 2003, letter attached as an exhibit to the Denneys' suit, Blue Cross told the family:
"This certification is part of our utilization management program to evaluate the medical need for health care services. Our goal is to enable you to receive the medically necessary treatment in the medically appropriate setting. The services listed above [a home nurse] have been certified as medically necessary."
The dispute began in March 2006, when Blue Cross told the Denneys in two letters that their nursing service claims for the previous month had been denied retroactively because they exceeded their plan's "maximum yearly benefits."
The Denneys said they were surprised, because they believed the care was well within their benefit limits, and raised an objection to Blue Cross.
Then, in early April, another letter from Blue Cross arrived, informing the Denneys of a different basis for the denial: The medical necessity of a nurse's care "cannot be established with the information provided."
The Denneys said they could not understand what had changed.
They sent a letter from David's pediatrician, explaining that he needed a nurse to monitor his neurological status, especially the ongoing seizures; to ensure that he did not aspirate vomit during his hourlong stomach-tube feedings; to administer medications for the seizures, spasticity and dystonia (which causes involuntary repetitive movements and contortions); and to prevent pressure sores, ulcers and contractures by moving and exercising his body. David's neurologist sent a letter concurring.
The Denneys asked Blue Cross to reconsider.
In a letter dated May 18, 2006, Blue Cross told the Denneys that it was sticking by its decision.
The letter identified the Blue Cross medical director who conducted the appeal as an obstetrician-gynecologist. The Denneys said they couldn't fathom why the appeal had been considered by a physician outside any of the areas of expertise involved in David's treatment: pediatrics, neurology, genetics and orthopedics.
"It's as bad misconduct as I have seen," said Mike Bidart of Claremont, the lawyer representing the Denneys.
"For 8 1/2 years to put in writing that treatment is medically necessary and then out of the blue to say it is not, is bad faith at its worst," he said.
Government safety net
The Denneys did the right thing in turning to Medi-Cal for help, said Stan Rosenstein, chief deputy director of healthcare programs for the state Department of Health Care Services, which oversees the program. "Medi-Cal is really there as a safety net," he said.
Medi-Cal covers not only the poor but also disabled people with medical needs that exceed or are outside the scope of their private coverage.
Of the 6.6 million Medi-Cal beneficiaries in California, 4% have some form of private insurance, Rosenstein said.
To obtain assistance from Medi-Cal, applicants must have a denial letter from their private insurer. Medi-Cal usually accepts those denials without question, Rosenstein said.
"Since we are dealing with such high volumes, we don't routinely have the ability to second-guess a payer's denial," Rosenstein said.
"However, when we hear of a case like this, we take it very seriously."