One is a new mother whose infant son requires around-the-clock medical attention. The other is a retired police officer who needs a specialist nearby to help treat a chronic illness.
Like millions of Americans across the country who have had disputes with their HMOs, these two Californians had neither the energy, the time, nor the willingness to pursue a lawsuit. They simply wanted their problems to be fixed.
So Nicole Breslin, 29, of San Jose, and Gerry Goldshine, 47, of Rohnert Park, turned to the state agency whose job it is to hear their complaints and try to do something about them: the California Department of Managed Health Care.
As Congress continues to debate new patient protection bills, experts say it is not the bills' most politically charged feature--the expanded rights to sue--that will directly affect most of the 175 million Americans in private health plans. Rather, the most important element in the congressional debate "is securing the right to a second opinion about your case," said Sara Rosenbaum, a professor of health law and policy at George Washington University in Washington, D.C.
A little more than a year ago, the California legislature established the Department of Managed Health Care to do just that. While 41 other states have enacted laws providing outside review of HMO complaints, the agency serves the country's largest HMO market--23 million members. While HMO complaints are handled by a variety of regulatory agencies in other states--typically, state departments of insurance--the managed health care agency is the only stand-alone agency of its kind in the country. "I have said from the beginning that we would not be impartial, that we would be admittedly pro-patient," said director Daniel Zingale, a former AIDS activist.
Many health policy experts and legislators across the country believe that the California agency offers perhaps the best glimpse of how expanded patient rights may play out for most Americans.
Based on interviews with patient advocates, health care lobbyists and policymakers around the state, there is a broad consensus that the department is largely fulfilling Zingale's pledge to create a consumer agency that is responsive to patients and effective in addressing their concerns. Observers said the agency has responded swiftly to cases that involved medical emergencies, has cut through HMO red tape to end delays in providing care and has quickly resolved misunderstandings between plans and patients. They say the department is a vast improvement on its predecessor, the Department of Corporation, another state agency that handled HMO complaints previously.
At the same time, advocates say there are many patients receiving substandard care whom the department cannot or does not help, either because the cases involve a thicket of disputed facts or because patients haven't presented their case effectively. "We hear the same thing from advocates around the country," said Ron Pollack, executive director of Families USA, a health consumers' rights group based in Washington, D.C., which has been active in the patients' rights debate. "These external review boards are trying to be objective, and many consumers just don't have the capacity to present their case like health plans do."
Nicole Breslin can talk about the department at its best. Last November, Breslin and husband, Christopher, gave birth to their first child, Christopher Liam, a child whose 91/2 pounds belied creeping degenerative muscle disease. Pale and ominously passive, the boy didn't squirm; he flopped. His breathing was uneven, his bones unusually soft. After weeks of testing, and surgery to correct his lung function, the Breslins still had no diagnosis. All they knew for certain, she said, was that their son would need a team of pediatric specialists to ensure his survival.
The new parents assumed their insurance was solid, for they were double-covered: Nicole had a Cigna HealthCare of California policy through her former job, and Christopher had recently enrolled in Kaiser Foundation Health Plan.
But in fact the double coverage proved problematic; an agreement between insurers providing joint coverage prompted the child's transfer from Cigna's care to a Kaiser facility in the middle of treatment. The Breslins couldn't bear the thought of moving their son. "We'd already moved him once, and after all he'd been through, we didn't want to have him poked and prodded and reexamined yet again," she said.
The stalemate put the baby's coverage, and his life, in the balance, the Breslins thought.
Desperate, Nicole called her legislator's office and learned about the health agency's HMO Help Center, which operates a 24-hour consumer hotline.
After reviewing the family's case, an agency lawyer informed the health plans that they could not deny or interrupt coverage because of problems coordinating care.
The boy would be covered, as long as he stayed in the hospital.
"I honestly don't know what we would have done without the department," said Nicole Breslin. The consumer hotline is the nerve center of Zingale's department, staffed by about 100 people, including customer service representatives, nurses and lawyers. If a health plan refuses to pay for care, or strings along the patient for more than 30 days, case managers can issue a formal complaint requesting that the health plan justify its position. And when doctors disagree about whether a procedure is medically necessary, by law the department must send the case to an independent panel of specialists, whose decisions are binding.
The department also has broad powers to intervene if it concludes that there's been a major violation, and Zingale has not hesitated to use them. Among the department's significant actions in its first year:
* In May, 2000, Zingale decided to fine Kaiser Permanent $1 million for failing to provide adequate care to a 74-year-old woman who later died of complications from a ruptured aneurysm. Kaiser is appealing the fine.
* In February, the department forced PacifiCare of California to pay overdue claims it owed to doctors and others in its networks.
* In May, the department took over daily management of Maxicare Health Plans, a statewide HMO with some 275,000 members, which is having severe financial problems.
For all that, there are some patients who feel the department has failed them. Gerry Goldshine is one. Goldshine has Crohn's disease, a chronic affliction in which the body attacks its own intestines, causing intestinal blockages, severe stomach cramps, disabling diarrhea and other symptoms. "Some days are better than others, some months better than others," Goldshine said. "But you need to have a gastroenterologist you can see when the disease flares up."
About the time the Breslins were haggling with their insurers, Goldshine learned that visits to his longtime gastroenterologist would no longer be covered; the doctor had terminated his relationship with Goldshine's health plan, PacifiCare of California.
Goldshine called customer service and asked for a replacement. He was referred to a doctor in San Francisco--more than an hour's drive from his house.
"That's just too far to go," he said. "To be honest, all I really wanted was for them to say, 'Go ahead and see your regular doctor, and we'll cover you until we find someone else."'
No such luck. By mid-March, frustrated with the delay, Goldshine called the HMO Help Center. A case officer contacted the health plan a few days later, and PacifiCare assured him that it had a gastroenterologist with an office in Petaluma, near Goldshine's home.
But when Goldshine called the Petaluma office, he learned that the doctor would not be seeing patients there for a couple of months. Even then, office hours were unpredictable, he said. "I was told that the doctor would be spending only two weeks a month in Sonoma County, and they couldn't tell me in advance which weeks those were," he said.
And there the matter stands. Though the department hasn't officially closed the case, it has not taken any action either, and Goldshine is now paying out of pocket to see his original doctor. "I was a police officer for 20 years," he said, "and if I let a case drop like this, I would have been fired."
Asked about the case, Zingale acknowledged that the patient is in a tough spot. "If at all possible," he said, "we should be able to get people in to see the doctors they want to see."
At the same time, he said, Goldshine's situation has problematic elements: Namely, there was no medical emergency; and, in the end, there was no clear violation of state rules governing HMOs.
In fact, patient advocates say, it's often difficult to pinpoint violations, even when it appears likely that a patient is receiving substandard care. "The department is relying at least partly on the health plans' account of what happened to patients," said John Metz, chairman of the California Consumers Health Care Council, a nonprofit advocacy group in Oakland, "but they have no way to verify the facts provided by the plan."
The result, said Metz, is that some cases go in favor of the HMO because it's not clear what happened. "If the department takes no action, that's a decision in favor of the plan," he said, "and often we think that's the wrong decision."
Barbara Reagan, chief of the HMO Help Center, acknowledged that it's not always clear from reviewing the information consumers and plans provide what exactly happened. "We cannot get involved in every 'he said/she said' case if there's no evidence of a violation" by the plan, she said. The agency is required by law to take action on complaints in 30 days.
And the workload is enormous. The agency said its customer service representatives field about 6,000 calls a month and file 300 to 400 formal complaints. (An automated phone system takes an additional 9,000 to 10,000 calls a month.) The volume is so high that, during peak hours, calls sometimes bounce to an outside answering service, staffers said.
That doesn't surprise advocates who have worked consumer hotlines. According to a study commissioned by Shelley Rouillard, who runs the Patients' Rights Hotline in Sacramento, an advocacy outfit serving four Central Valley counties, almost 60% of hotline calls take between 30 minutes and five hours to handle. The average for those calls: an hour and a half. Even quick-resolution calls--35% of the total, according to the survey--take an average of 17 minutes, she said.
"The way the HMO Help Center hotline is set up, they don't have time to help every patient prepare his or her own case," said Rouillard, who advised the HMO Help Center on its hotline. "They're trained to do quick resolution, to take care of the urgent cases and advise consumers on how to be their own advocates."
Yet when it comes to advocating for oneself, the deck is still stacked in favor of health plans, patients' rights experts agree. The plans deploy medical directors, lawyers and other paid professionals to argue their side, Pollack says. Patients, however, are often sick, confused and unfamiliar with the legal and medical fine points that pertain to their case.
Some of the most time-consuming cases that Rouillard's outfit handles, for example, involve standoffs in which a patient needs a highly specialized surgery and believes that the HMO's doctors lack sufficient expertise.
The plan is not technically denying care; it has board-certified specialists in place. The question is whether those doctors are among the best ones to perform the procedure. "In these cases, people need a lot of help in order to make a convincing appeal to the health plan," she said, "and the DMHC can't do that for you. They're not authorized to do that."
Yet if departments are to make managed care actually work for American consumers, Pollack said, then they'll need not only a strong leader, like Zingale, and a clear mandate to advocate for patients, but lots of help, from patient consultants like Rouillard. In bills being debated by Congress, Families USA has sponsored amendments authorizing federal money for patient assistant programs throughout the country. "We know these patient assistance programs can make a big difference for people," he said, "and they can often get things solved before they reach external appeal."