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:
COMPREHENSIVE ADVOCACY
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.
INSURANCE ADVOCACY
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.
MEDICAL ADVOCACY
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.
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