Your Guide To The Medical Maze

Advocates can help with research, cutting red tape, and making decisions

About a year ago, Ann Principe saw worrisome symptoms in her 75-year-old mother. "Her short-term memory was gone. She was forgetting her own granddaughter's name," the 47-year-old Kensington, (Md.) woman recalls. Principe sought help. Instead of calling one of her mother's half-dozen doctors, she phoned the family's health advocate -- a new breed of adviser who guide patients through the medical maze.

The advocate, who works for Baltimore-based Pinnacle Care International, gathered medical records and consulted with each of the woman's doctors. The recommendation: Cut back on some of the medications, the combination of which could be causing memory problems. Now, says Principe, her mother is "fully aware of what's going on and feels well."

The health advocate is just the latest sort of personal adviser the busy professional can enlist. In a time of serious illness, these advocates can help research new treatments that doctors may not know a lot about, cut through the medical bureaucracy, and perhaps help frame medical decisions more objectively than stressed out patients and their family members. Advocates aren't just there to help you heal but also to keep you healthy. Richard Rossi, 50, co-founder of Vienna (Va.)-based Envision EMI, a developer of educational programs, recently plunked down $10,000, plus a $5,000 annual retainer, to sign on with Pinnacle. "For a healthy person like me, it's all about optimizing health," he says.

As a private, for-profit provider, Pinnacle is at a fast-growing end of the health advocacy business. There are other sources of help. Various nonprofits offer similar advice for free. So do some hospitals, clinics, and insurers, though some advisers work for those institutions so their advice may not necessarily be objective.

By hiring your own advocate, you're banking on getting highly attentive service. Just be aware that this is an unregulated industry. As a result, there's a lack of uniformity in advocates' services, credentials, and fees. Advocates may have medical backgrounds, hail from the insurance industry, have social work degrees, or be former patients who have learned from their own experiences. While some focus on resolving insurance disputes, others aim to facilitate medical decision-making. Some specialize in managing care for particular diseases, such as cancer. The high-end providers even throw in concierge-type amenities: For example, Pinnacle advocates will call to remind clients to take their medication, even several times a day.

If you're interested in retaining an advocate, seek referrals from doctors, other patients, and the nonprofits that specialize in the disease or medical condition you're trying to treat. Ask what services you'll receive, fees you'll pay, and whether your advocate receives money from doctors, hospitals, or other sources that could compromise objectivity, says Marsha Hurst, director of the health-care advocacy master's degree program at Sarah Lawrence College in Bronxville, N.Y. If you're in the market for a health advocate, here are the types of services available:


Among advocates offering a wide range of services, Pinnacle, founded in 2002, offers perhaps the most personalized -- and expensive -- care. Clients, along with spouses and children under age 23, are assigned an advocate who is typically a nurse or social worker, although about 10% are doctors.

To expedite diagnoses, Pinnacle can arrange back-to-back appointments with specialists. Advocates research doctors' credentials and success rates. They also investigate clinical trials and help clients select treatments. To get patients to the front of the line with booked-up specialists, advocates ask the 51 unpaid doctors on Pinnacle's medical advisory board to pull strings at renowned centers such as Johns Hopkins and The Cleveland Clinic. Advocates attend examinations to take notes and ask informed questions. The company locates nutritionists, experts in alternative medicine, and cosmetic surgeons.

Pinnacle charges a one-time initiation fee of $10,000 to $30,000 per family, which covers costs that include gathering medical records and a detailed two to five hour consultation. Clients also pay an annual retainer of $5,000 to $25,000. (Where a client lands on the spectrum of fees depends on the level of service selected.) While the fees include a comprehensive "executive" physical for one family member, clients or their insurers are responsible for all other medical bills. By assuming much of the burden for paperwork and medical research, Pinnacle aims to help the busy executives it caters to stay focused on business.

There are less costly alternatives. The nonprofit Center for Patient Partnerships at the University of Wisconsin Law School serves people with chronic or life-threatening illnesses for free. The center can help resolve insurance disputes and negotiate lower medical fees. Advocates also look into treatments and help finagle appointments with specialists, says Meg Gaines, who founded the center in 2001.

Some other comprehensive services contract with employers, who provide advocacy as a perk for employees. At least one, Health Advocate of Plymouth Meeting, Pa., also works for individuals for $125 an hour. "We're not promoting this, but we try to avoid turning someone away," says executive vice-president Martin Rosen.


Some advocates focus on assisting with insurance-related matters. One such organization is the nonprofit Patient Advocate Foundation of Newport News, Va., which also helps resolve financial problems precipitated by illness. Its services are free, but you've got to have a chronic or life-threatening illness to qualify. Alternatives include Healthcare Navigation, a Fairfield (Conn.) firm that charges from $80 to $200 an hour.


Some patients may want an advocate who specializes in a particular area of medicine. Dr. Gail Gazelle, an assistant clinical professor at Harvard Medical School, works mostly for those with chronic or incurable diseases in her Boston practice, Palliative Care Associates. Meanwhile, a majority of clients of HKS Patient Advocates of New York are battling cancer.

Be aware that advocates with a medical specialty may not provide much help with insurance paperwork. Still, they often do more than facilitate medical decisions. Gazelle, who charges $200 an hour, says she's often called in when patients "are getting close to the end and have a lot of questions." She gives clients her cell-phone number and gently suggests strategies to help families cope.

When sickness strikes, it's helpful to have someone in your corner to help you make informed decisions. Like Ann Principe, you may discover an overlooked solution to a medical problem. At the very least, you'll be able to spend more time where it counts -- getting well or helping the patient.

By Anne Tergesen

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