Grayson had a normal physical at age one, but months later was rushed to the emergency room and diagnosed with a brain tumor. A pediatric neurologist there told the parents his condition was life-threatening and that he needed to be taken immediately to either Columbia-Presbyterian Medical Center or Yale New Haven hospital.

The tumor was removed, and the trauma is over, but the family spent two years trying to get their insurance company to cover the hundreds of thousands of dollars in hospital bills they racked up. The claims were initially denied because the insurer claimed it was a pre-existing condition. It then said the treatments were outside of their network.

“This is a child who hit his $2 million maximum benefit allowed at age 3,” says Maura Carley, whose Fairfield, Conn.- based firm, Healthcare Navigation, has been fighting the insurer on the family’s behalf. “This is the kind of situation where the family has to have a plan for health-care coverage, because this kid is now uninsurable in the private marketplace.”

Another client had a 7-year old child with leukemia who needed a bone marrow transplant. Both the family and their child’s oncologist wanted the transplant done at Memorial Sloane-Kettering Cancer Center in New York, but the insurance company said having the surgery there would be considered out of network. Instead, it pushed the family to have the procedure done at one of the two centers with which it had a contract: one in the Midwest and another in the south. Carley’s firm appealed to the insurer and persuaded them to allow the family to do the procedure locally.

It is situations like this that have prompted hundreds of companies to come in the scene in the last decade to help people navigate a healthcare industry that at best seems unfair and at worst, can seem Kafka-esque. This growing industry, known loosely as concierge medicine, covers a variety of services, from reviewing people’s insurance policies to assure they’re adequately covered, to offering instant access to a doctor. They not only appeal claims that were denied but can negotiate for coverage before a procedure has even occurred.

The fees charged by these firms vary widely, depending on the level and type of service. MDVIP, a popular concierge medical practice in Florida, for instance, gives patient’s greater access to a doctor for an annual fee of about $1,500. More full-service firms, like Healthcare Navigation and PinnacleCare, not only review coverage and appeal denied claims but actually accompany patients on doctor visits, for $10,000 to $50,000 a year. At the high-end, firms deal not only with a patient’s healthcare but with their wellness, aging and beauty. Some throw in perks like driving patients to the doctor in a limousine and giving them monogrammed robes made of plush Egyptian cotton to wear in the doctor’s office. Elite Personal Physician Services in Beverly Hills, for instance, has packages that range from $10,000 to $150,000. The Miami Institute for Age Management and Intervention in Florida has an annual package that costs $250,000.

Most of their clients are affluent, a group some say is particularly susceptible to having poor health coverage. That’s because health insurance usually comes with a job, and the wealthy don’t necessarily need one.

“My advice to the wealthy is to view health care coverage like they do any other type of risk management,” Carley said. “People with substantial assets should take prudent steps to protect them.”

Carley says she’s seen clients purchase policies that have such low limits per condition that it cannot really be considered coverage. Others obtain policies and have clearly failed to read the fine print. One man was offered a new job but feared leaving his old one because he didn’t want to jeopardize his autistic son’s health coverage. The human resources department of his new company assured him his child would be covered for 90 therapy visits a year. He took the job and when he filed his first insurance claim, it was denied. His insurer said therapy was only available to people with injuries or acute illness. Children born with congenital problems were specifically excluded, the insurer said.

Sometimes modern medicine simply moves beyond what is covered in the policy. Many insurers, for instance, won’t pay for outpatient chemotherapy. And yet most chemotherapy is administered on an outpatient basis. There are also pharmaceuticals now used, which certainly aren’t administered in a hospital. Tarceva, for instance, is a new chemotherapy drug for advanced pancreative cancer that costs $150 a day, and yet few insurers cover it.

One woman, a single mother who raised her children on a seamstress’ salary, signed up with Healthcare Navigation after her chemotherapy was denied. Carley says her firm appealed the denial of the claim but lost. It then took the woman’s case to the New York State Insurance Commission and lost again. In the end, Carley talked directly to the insurer, Empire Blue Cross, into paying for chemo that would be administered in the woman’s home.

“We made a very impassioned plea,” Carley said.

The firms that appeal claims say they rarely lose, but that’s largely because they’re choosy about the appeals they decide to pursue. A lot of people will think they have a claim when they don’t.

Firms that appeal denials say once they determine a procedure is covered by the policy, they look for human errors, like codes that were put into the computer incorrectly or paperwork that was lost by the provider or the insurer. Carley said she was once at a meeting of physicians and they said one of the most common problems they face is getting the insurance company to acknowledge they actually received the claim.

Coding errors apparently cause an enormous amount of denials. One patient had heart surgery, but instead of inputting the surgical code, his cardiologist’s office put in the code for a minor lab test. The result was that his insurer paid the provider only $80 instead of $20,000.

“ MY ADVICE TO THE WEALTHY IS TO VIEW HEALTH CARE COVERAGE LIKE THEY DO ANY OTHER TYPE OF RISK MANAGEMENT.” –MAURA CARLEY

“It happens all the time,” said Nora Johnson, director of education and compliance for Medical Billing Advocates of America, which also appeals claims on behalf of consumers.

Johnson says that according to the National Fee Analyzer, a hefty one-third of all claims filed contain coding errors. In addition, providers will sometimes invert a couple of figures in a patient’s social security or insurance identification number resulting in benefits being denied, she said.

The reimbursement policies of insurance companies are actually driving some doctors into concierge medicine. Cheryl BryantBruce was an M.D. with a family practice before launching a concierge medical practice. She says she was tired of insurers meddling in her business.

“Insurance companies were telling me how to practice medicine,” BryantBruce said. “I know what’s best for my client, and they’re telling me you’re going to do it this way because it’s cheaper.”

Her firm, Elite Personal Physician Services, aims for the high-end of medical concierge. Clients don’t just receive 24-hour access to doctors but have a team of specialists focused on their total well-being. The firm employs nutritionists, massage therapists, nurse practitioners, a neuropsychologist, and a celebrity spray tanner Jimmy Jimmy Coco, all of whom will go to the client’s home, office, or vacation residence, even if it’s half way around the globe. BryantBruce is even learning Greek so she can speak to her Greek clients in their native language.

Bryant Bruce believes that most disease comes from a mismatch between a patient and his or her environment. As such, clients receive a weeklong assessment that includes a complete physical and stress test, and a thorough nutritional assessment that includes an inventory of the client’s pantry and utensil drawer. Clients are also accompanied to their favorite fast food joint and restaurant, so the firm can understand not just what they eat but how. Clients submit to a wardrobe assessment, to determine what colors they’re picking and whether their closet is organized, as well as a psychological interview. In the end, they are given a 10- to 30- page report that spells out a lifestyle plan for optimizing their overall well being.

Bruce Spector, Chairman of PinnacleCare, based in Baltimore, says the burgeoning field of concierge medicine is the result of people becoming enormously frustrated with the state of the healthcare system.

“It’s an understatement,” Spector says. “And so there are now a lot of companies and services out there to address that frustration.”

He says “concierge medicine” used to refer to the small doctor practices that charged an annual retainer for access. But he says that is just one small part of this developing sector. WebMD is another, as is a company like MedJet, which provides emergency medical evacuation programs for travelers.

”All of these companies are doing things so that affluent families can have a better experience in the healthcare field,” Spector said.

His firm provides a whole host of services, from advanced diagnostic and genetic testing to storing stem cells. They also provide helicopters for evacuation in emergency situations, and locate the relevant medical research that can assist people who are gravely ill. And every patient gets a relationship manager, who will guide them on which doctors to see, schedule appointments, even accompany them to those appointments and take notes. Spector says handholding can be the difference between life and death.

“We go way beyond that for people who want the most comprehensive management support for medicine,” Spector said. “Not only do we do the research, get the access and manage it, but you don’t wait on lines.”

One client had recurring cervical cancer that had progressed so far, doctors refused to take her on as a patient. But her relationship manager found a surgical oncologist at Johns Hopkins who was willing to treat her. The doctor performed a difficult six-hour surgery to remove a tumor that was wrapped among her arteries and veins. He had one of the country’s leading vascular surgeons on hand so that they could actually remove the arteries and veins in
order to get the tumor out. After undergoing three more rounds of chemotherapy, the patient’s relationship manager accompanied her to her last CT-scan, where she was told her cancer had finally gone into remission.

While PinnacleCare’s practice serves mostly individuals, Spector says the firm also has a fair number of corporate clients, though they serve only the executives, or what he referred to as the C-Suite: the CEO, the CFO, the COO. The company will hire his firm because if someone in the executive’s family gets sick, it’s in the company’s interest to have a firm like Pinnacle, rather than its CEO, accompanying that family member on all of those doctor’s appointments.

“We take it off their plate,” Spector said.