After Elsa Newmyer's surgery last year went terribly wrong, she was laid up in a hospital bed for months. Dozens of medical bills, some 30 pages long, began piling up. Her husband, Larry, who had to manage the payments, was overwhelmed.
"The health care bureaucracy is crippling," said Newmyer, 62, a retired teacher who lives in Washington, D.C. "There are lots of layers to get to the right person. So you end up paying bills just because you've run out of energy."
In desperation, she turned to a patient advocacy firm, Patient Navigator, which helps coordinate care, do in-depth clinical research and find appropriate doctors. A professional there examined Newmyer's bills, checking for errors, and ultimately negotiated lower payments. The amount saved was at least $10,000, Newmyer said.
As patients like Newmyer struggle to cope with the dizzying demands of a trillion-dollar health care system that generates most of its revenues from older people, they are increasingly turning to patient advocates for help. The profession, officially seven years old, now has about 650 advocates, including doctors, and is growing rapidly, according to the Alliance of Professional Health Advocates.
Patient advocates are springing up to handle everything from finding doctors for hard-to-diagnose diseases to negotiating medical payments with hospitals and doctors and pressing insurance companies to cover claims.
"Nobody teaches us to be smart patients and advocate for ourselves," said Trisha Torrey, founder of the health advocates organization. "So people need somebody to hold their hand. We're boots on the ground."
The rise of this new cottage industry reflects not just the difficulties of navigating a complex health care system, but the unequal power relationships between providers and insurers on one side of the equation, and patients and families on the other, said Lisa McGiffert, director of the Safe Patient Project at Consumers Union.
Moreover, despite efforts to rein in costs, the system is still driven by a pay for service model, which encourages excessive procedures and inflates prices, she added. "We've been sold a false model, like having too much imaging," McGiffert said.
Finding an effective patient advocate isn't easy. Currently, there is no certification, and anyone can qualify. Courses are being offered at over 30 universities and colleges, but there are no common guidelines. As a starting point, Torrey said, patients should ask potential advocates whether they have handled similar cases.
McGiffert agreed, suggesting that patients should ask for referrals from at least three previous clients. She also encouraged choosing someone without a stake in the system. "A patient advocate hired by a hospital or health plan probably won't be the best person," she said.
Advocates can be costly, which makes selecting a good professional even more important. The hourly rate ranges from $100 to $450, especially as more doctors come into the field and more research is required to determine the value of emerging treatments.
"Specialty illnesses take some real digging," said Elisabeth Schuler Russell, founder and president of Patient Navigator. The firm, which charges $150 an hour, scours academic literature and reviews drug trials to uncover more information, among other tasks.
Schuler Russell, a former foreign service officer, taught herself to navigate the medical system when her daughter was diagnosed with an inoperable brain tumor. "There's no guidebook or lifeline, she said.
In the case of Newmyer, Patient Navigator's advocates also helped her find a doctor at the Cleveland Clinic to handle a rare illness that threatened her life as well as a good local gastrointestinal doctor and nutritionist. They even attended internist appointments with her.
"Patients can focus on their own healing," Schuler Russell said. "We save them stress, time and money."
Jane Morrison, 67, had a good experience working with a patient advocate when she was employed by IBM. So Morrison, who lives alone and is housebound, turned to a patient advocate again when medical bills began piling up.
"My advocate has saved me thousands of dollars," said Morrison, who lives in Roswell, Georgia. Her advocate also helped her sign up for Social Security and hire a more trustworthy caregiver. "She has connected me to resources, and checked in to see if my nursing care is going well," she added. "When you're ill, you're not up to embracing details."
Many patients find it hard to negotiate for themselves. "They have more traditional, accepting patient roles," said Judith Hibbard, a professor of health policy at the University of Oregon. "Advocates can help in a number of ways."
Some doctors, seeking to challenge the increasing bureaucratization of health care, have changed roles. "Part of medicine was being pushed out by insurance companies," said Dr. Annette Ticoras, who became a patient advocate two years ago. "I knew I had to do something."
Ticoras, who charges $200 an hour, now helps people understand complex medical explanations, especially ones for complicated diagnoses. She also accompanies people to hospitals, books medical appointments and researches the best doctor for rare diseases or clinical drug trials.
Families can be effective advocates, she said, but they are not always experienced. And as patients' medical options multiply, choices can be more difficult, said Ticoras, who lives in Columbus, Ohio.
"Patients are demanding full disclosure of their options," she said. "Previously, you were instructed by the doctor."
Kathy Schmidt, 59, started working with Ticoras a year ago. Schmidt had been sick for over eight years, and bedridden most of that time. "When I called a doctor, I got the runaround for weeks," Schmidt said. She said she endured surgeries she didn't need. "I needed someone who was an expert and could work through the medical jargon."
With her permission, Ticoras talked directly to Schmidt's doctors. As a result, Schmidt ended up having a final surgery that solved her health problem.
For people with chronic illnesses, advocates can be particularly helpful, McGiffert said. Another reason to hire outside help is when you are being pressured by insurance coverage. "But if you have a good health plan, you might not need one," she said.
With digital processing of medical bills, it is now possible to have them analyzed online. Using crowdsourced data, the patient advocacy site Copatient lets consumers upload their bills for review, get a free report, and then opt to use an advocate to negotiate savings. Copatient receives a share of the savings.
More than 20,000 patients have registered for Copatient, which began three years ago.
"Many consumers aren't aware that you can negotiate bills," said Rebecca Palm, co-founder of Copatient. "So we do a lot of work to educate the market."
Newmyer has regained her pre-surgery health and is out and about in the world again. "I'm profoundly grateful," she said.