Walking the Health Care Labyrinth

As soon as she arrived home, Elisabeth Russell knew something was wrong with her two-year-old daughter: Claire was walking funny, dragging her left foot. She called her pediatrician, who agreed to see Claire the next day. After a flurry of tests and CT scans, doctors sat Elisabeth down and spoke words a parent hopes never to hear: “Your daughter has a brain tumor.”

Lightheaded with shock, Elisabeth collapsed. Once she came to, she sat frozen, struggling to decipher what the jargon-jabbering specialists were telling her and her husband. But what it boiled down to was this: “They said there were no survivors of this kind of tumor; that my daughter had, at most, six months to live,” she recalls. Feeling desperate and anxious to do something, Elisabeth started calling the top brain tumor specialists in the country, pleading with receptionists and nurses to speak to someone, anyone, who could help. Within a few days, the evidence she’d gathered convinced her that Claire’s only option was radiation, and shortly thereafter her daughter started receiving treatment five days a week.

At that point, Claire’s condition had deteriorated and she could no longer stand up. Initially, the radiation appeared to have no effect, and the tumor continued to grow. But five months into treatment, the tumor began to shrink. Claire began to stand on her own, and scans revealed that all that was left of the tumor was scar tissue. Claire survived, bucking the first medical team’s prognosis.

Five years later, Elisabeth was discussing her daughter’s recovery with her pastor. Was Claire’s remission a miracle? And if so, what could she do to repay this karmic debt? The pastor’s reply: “Help other people going through the same thing.”

Leading the Way

Elisabeth Russell has been a pioneer in a new and increasingly necessary profession: She’s a patient navigator, guiding people through the terrifying maze of decisions they must make when caught in the complexities of America’s health care system. Some people call her because they suffer from a mystery ailment that a parade of physicians have been unable to diagnose. Others have received a grim prognosis, and doctors claim there is no cure. Still others are simply drowning in information and options that doctors are too rushed (or don’t understand well enough) to explain, or they are fighting with insurance companies that have stuck them with hefty bills. Where America’s health care system fails, Elisabeth deftly steps in to find solutions that can save her clients’ lives, and to protect their dignity as they navigate a sometimes inhumane system.

A petite 54-year-old who dresses in pantsuits and pearls, Elisabeth has no medical training. For 22 years, she served as a diplomat for the U.S. Department of State, guiding congressional delegations and briefing governmental officials including President George W. Bush. But after her daughter’s cancer woke her up to the nightmarish state of America’s health care system, she retired from her diplomatic life to pursue patient navigation full time. Working from her Colonial-style home in Vienna, Virginia, with her English springer spaniel, Jack, at her feet, she founded Patient Navigator, LLC, in October 2004. At first, Elisabeth’s family was skeptical of her new profession. “They thought I was crazy,” she admits.

Since then, Elisabeth has helped nearly 400 patients get answers they wouldn’t have found otherwise. One was a woman in her 20s with debilitating pain who came to her after doctors could not pinpoint the cause. “She’d been through what I call the ‘specialist shuffle,’ where they couldn’t pass her fast enough to another specialist,” Elisabeth recalls. “She didn’t fit in any box—her endocrinologists knew one thing; gastroenterologists, another—but no one was looking at the whole medical record.” So that’s what Elisabeth did: She pored over a stack of paperwork, then dived into research online. Eventually she helped the patient point her specialists toward studies that helped them unravel the mystery of what was plaguing her: a rare immunodeficiency called Sjogren’s syndrome. With the appropriate treatment, the woman’s pain has subsided and she’s now doing well.

In addition to finding ways to scale medical brick walls, Elisabeth assists with financial and billing challenges. For example, a New Jersey man received a $27,580 bill for treatment at a rehabilitation center that his health insurer had said would be covered. After he called Elisabeth in a panic, she began a months-long appeals process that led to the state’s insurance commissioner—who ruled that the insurer should cover the bill.

An Emerging Field

Most people don’t even know what a patient navigator is, but that may soon change. Every week, Elisabeth gets dozens of calls and emails from people wanting to enter the field (practitioners also call themselves patient advocates). Currently she employs three part-time navigators who, like her, fell into the profession after personal encounters with the health care system’s shortcomings. In 2009, Elisabeth was a founding member of the National Association for Healthcare Advocacy Consultants (NAHAC), which now has more than 300 members across the country. “We’re just at the point of appearing on people’s radar screens,” says NAHAC founder Joanna Smith. “The most common comment I get is ‘I found you on the Internet. I didn’t realize a profession like this existed.’” Soon, though, “I think the dam will burst and people will become aware that this service is out there.”

In the meantime, Elisabeth hopes her story will teach all of us that there is a way out of the morass of America’s health care system. For a hopeful reminder of this fact, all Elisabeth has to do is look at her daughter, who is now 16 and wants to become a nurse. It’s a new era of patient advocacy, Elisabeth says. “The days of just assuming the doctor knows everything, or assuming the system will get it right, are over. People must become educated health care consumers to avoid slipping through the cracks.”

Advocate for your own health

Baffled by jargon-slinging doctors or surprise medical bills? These tips help get the answers you need.

1. Don’t ambush your doc

If you’ve done research online and want to discuss it with your physician, keep in mind that she hears about patients’ Google searches daily. She may be skeptical of self-diagnosis. Bring a printout of the research, or better yet, email or fax it beforehand so she has time to read it over and give it some thought.

Don’t just settle for the first surgeon or oncologist you meet. Many health problems last for years and the treatment you get can have life-changing consequences. So if you feel like your questions or concerns are brushed aside, consult someone else. And don’t assume your doctor is the only agent of change in this equation. Instead of asking, “What can you do?” ask, “What can we do to improve the outcome here?”

3. Hire some help

If you think you need a patient navigator (also called patient advocate), go to the National Association of Healthcare Advocacy Consultants, whose members are bound by a code of ethics. NAHAC members don’t actually make diagnoses or recommend treatment. Instead, they present options that may help point you and your physician in directions you wouldn’t have considered on your own. Also, ask whether your navigator receives money from insurers, hospitals, or other sources because this might compromise her objectivity.