Last spring, Wendy Burgess, a 40-year-old neuropsychologist who lives in Raleigh, N.C., was told she should try an experimental stem-cell treatment for her rare form of breast cancer. But her HMO, run by Wellpath Community Health Plans, declined to cover it. Her husband, E.J., also a neuropsychologist, made a personal plea to the HMO's medical director, who rejected the claim yet again.
Exasperated, E.J. called the Patient Advocate Foundation, a Newport News (Va.)-based nonprofit that acts as a liaison between patients and their insurers. Having exhausted other options--including getting Wendy into a research program--he asked for legal counsel to help him persuade the HMO to cover the treatment, expected to cost a minimum of $150,000. Within 10 days, the Burgess' team of lawyers convinced Wellpath to pay for Wendy's treatment, says E.J., who had to pay the lawyers only a "reasonable" fee. "We tried to get in through the normal door, through the research door, and then we went for the attorneys," he says. Tracy Baker, Wellpath's CEO, declined comment because of patient privacy issues.
Frustrated by the managed-care system, consumers like the Burgesses are looking to patient-advocacy groups to help them navigate the confusing and bureaucratic world of health care. The need has become so great that an entire industry has cropped up. Some, such as the 157-lawyer Patient Advocate Foundation, are free or charge a small fee, depending on how much work is required. Others are only available if your company pays from under $1 to $2.50 per employee per month. A third group offers counseling to individuals for a fee that starts at $50.
The trend speaks volumes about the difficult position patients find themselves in these days. While figures on how many Americans use patient advocates are hard to come by, statistics showing dissatisfaction with health-care plans are not. In a recent Watson Wyatt survey of 10,000 employees, just 43% of the workers said they were satisfied with their health plans. Another survey by Hewitt Associates found 54% of the problems employees have with their health-care plans have to do with the administration of the programs.
Companies like CareCounsel of San Rafael, Calif., hope to brighten the picture. Founder Larry Gelb, a mental-health clinician, started CareCounsel in 1997. The goal is to serve as an extension of a company's benefits department by answering questions ranging from how to resolve a claim to what benefits are included in a given plan. It also advises employers on which new health-care plans they might consider. Finally, it acts as a neutral party to help consumers on particularly sensitive issues such as mental-health problems. "The need for these programs would go away if managed-care companies got their act together," Gelb says. "I'm not holding my breath."
Corporate benefits managers who use Gelb's service say they like it because it reduces the number of calls they get each day. Executives at home-furnishing retailer Cost-Plus World Market of Oakland, Calif., started using the service last September and have found it frees them from having to deal with minutiae. Diane Del Conte, Cost-Plus's benefits manager, says employees contact CareCounsel for everything from finding a doctor to determining what procedures are covered in a given plan. Surveys of Cost-Plus employees show that 84% of those who have used it like the service. Plus, at $2 per employee per month, it's cheaper than adding staff. "I'm able to look at global issues like health-care design," Del Conte says. "I wish we had them five years ago."
Even traditional consulting companies such as Hewitt are offering advocacy services. Hewitt set up its system in 1995 after getting what seemed like an endless stream of calls from clients' employees who were having problems with insurance claims. Marie Kobos, Hewitt's practice leader of participant advocacy, says some 37 clients with a total of 1.4 million employees now pay Hewitt about $1 or less per employee per month for the service.
If you don't have access to an advocacy service through your employer, you can call an independent advocate. One of the more experienced ones is Vincent Riccardi, an internist in La Crescenta, Calif., who started the nonprofit American Medical Consumers in 1992. For a starting fee of $50 that increases depending on what the patient needs, Riccardi helps patients who are in the middle of treatment and have questions about what the next step should be. He also advises people who feel they or their family members have been victims of malpractice. And he works with those who feel they were unreasonably billed for a medical procedure. "A lot of times it's a matter of advising the patient that they actually have the ability to challenge things," says Riccardi, also a clinical geneticist.
Like Riccardi, Philadelphia-based Healthcare Advocates caters to individual patients. Started by Kevin Flynn in 1996, Healthcare Advocates also offers its services to employers. Flynn, 33, decided to dedicate himself to helping other patients after he had a tough time getting health-care coverage after he was hit by a car at age 18.
Flynn helps people like Donna Johnson, a 34-year-old outpatient medical receptionist who works at Thomas Jefferson University Hospital in Philadelphia. Late last February, Johnson was scheduled to donate one of her kidneys to her 55-year-old father, Robert Johnson. But the Friday before the surgery was to take place, the transplant center notified them that their insurance, run by UnitedHealthcare, wasn't going to cover the procedure. The reason: The Johnsons wanted the transplant done in the hospital where Donna worked, and it was out-of-network.
The news came as quite a surprise, since both Donna and her father had had extensive tests relating to the surgery at that hospital and all of them were covered by the insurance. For its part, UnitedHealthcare said that Johnson's type of plan required him to use an in-network hospital. A friend of Donna's recommended she contact Flynn. Within three weeks of getting Donna's call, Flynn managed to convince UnitedHealthcare to cover the surgery. The transplant is scheduled to take place on May 7. "It was like a godsend," says Donna, who paid Flynn $200 for the assistance. "It didn't matter how much it was. He came back to us with results."
Results are what's selling thousands of people on patient advocates. The Patient Advocate Foundation helped 157 patients in 1996, its first year of operation. Last year, it counseled 56,075 patients and resolved nearly all of their cases. Says Nancy Davenport-Ennis, the group's founder and executive director: "The managed-care system becomes more complicated every day." Unless that changes, the patient advocates will have a full caseload well into the future. By Laura Cohn