A terrifying case of botulism left Jessica Sklar feeling helpless. In addition to being paralyzed by the toxin last fall and spending nearly six months in the hospital, the college professor often felt disconnected from her caregivers and out of control of her own medical decisions.
About four months into Sklar's hospital stay, her relatives in Michigan found what she needed: a health advocate, part of an emerging industry of professionals who specialize in navigating the health care bureaucracy. The family hired Seattle-based Allied Health Advocates to ensure Sklar's interests were represented.
For $150 an hour, the company provides experts who work exclusively for the patient - not the hospital, insurance company or any other interest. Allied hires medical professionals as contractors to help clients navigate insurance bills, translate medical lingo, or even ask the right questions along the way. Advocates are usually nurses, nurse practitioners, physician assistants, or they have other relevant experience.
Beth Droppert and Robin Shapiro founded Allied in 2008. Both have had their own experiences paddling the murky waters of health care. Shapiro helped her father during a serious illness. Droppert, a nurse, often used her professional expertise to advocate informally for family members and friends.
They wanted to create a company that would help people become more involved in their care, and take back some of the power that can be lost with a dire diagnosis.
"Think of a financial planner," Shapiro said. "You can do financial planning and budgeting on your own ... but for some people it really helps to have a financial planner so you are thinking ahead proactively about the consequences of your choices."
It's a new business model that has picked up momentum around the country in the past five to 10 years.
Allied is benefiting from that trend: Its 2012 revenue grew year-over-year by 120 percent. While the company declined to share revenues, it projects roughly 80 percent growth for 2013.
For Sklar, a math professor at Pacific Lutheran University, her advocate entered her care process just as she was weaning off a ventilator. The hospital made it clear she would need to move to another care center for the next phase of recovery, and Sklar, now 39, had no idea where to go.
Beck Royer, a physician assistant and patient advocate for Allied, personally visited and researched a number of places around the Seattle area, finally recommending a care center that Sklar was thrilled with.
From the time Sklar's family hired Royer, the advocate started meeting regularly with Sklar's care team. Royer coordinated with the patient's nurse practitioner, social worker, physical therapist, occupational therapist, respiratory therapist and the nurses. Most importantly, she was a liaison between the team and Sklar, communicating any frustrations or desires along the way.
"My role is not to diagnose and prescribe," Royer said. "My role is to advocate, listen and communicate for the patient with the team."
At one point, Sklar was prescribed a medication she would have to take for several days, when there was an option for a one-dose treatment. Despite her protests, the doctor was insistent. Royer's intervention put a stop to that.
"Often Jess would say, 'I don't feel like they're listening to me,'" Royer said. "So my role would be to bring in the nursing team or the social worker or whatever just so we could figure out from Jess what it was she meant by that."
Sklar, who is now back in her Seattle home and walking again, called Royer a "cheerleader and a voice of reason."
"She was an advocate, but she was also a mensch, a friend," Sklar said. "I only wish we had known about her sooner. It would have been in some ways a much better experience."
Health advocates can help with the many smaller but overwhelming elements of a serious accident or illness. Whether it's finding someone to build a wheelchair ramp, negotiating insurance coverage for a confusing bill, or making the dozens of calls often required to navigate medical bureaucracy, advocates are paid to do it.
The national Alliance of Professional Health Advocates estimates as many as 250 independent professionals are offering health advocacy services in the U.S., although no official count exists.
According to the job-search site Indeed.com, the number of job listings for patient advocates has grown more than 225 percent since 2006. It's still a small number - those job listings make up less than half a percent of the site's posted opportunities for all fields.
But as the medical industry undergoes reform, the confusing climate could make this a good time to enter the health advocacy business.
The concept is gaining popularity among people with aging parents on opposite sides of the country, Droppert said. The intervention of an advocate can sometimes help a family member stay in the home longer, or negotiate a lower cost of care with insurance companies and care providers.
Shapiro, the co-founder of Allied, is also the chairwoman of the recently formed Washington State Health Advocates Association (WASHAA). That group, like its national counterparts (the National Association of Healthcare Advocacy Consultants and The Alliance of Professional Health Advocates) has a keen interest in defining best practices and professional standards for advocates.
Right now, the industry is so new that no regulations or accreditation standards exist.
Only a few schools, including Sarah Lawrence College in Bronxville, N.Y., offer legitimate patient advocacy programs, said Elisabeth Schuler Russell, president of NAHAC and founder of a Maryland-based advocacy company, Patient Navigator.
The National Association of Healthcare Advocacy Consultants (NAHAC) has created a code of ethics that all members must sign, and it's forming a steering committee charged with developing nationally recognized credentials.
An employee benefit?
As the industry gains momentum and legitimacy, Droppert and Shapiro hope employers might use Allied as a supplement to existing health benefits for employees.
Mike Edminster, the chief financial officer at Hoquiam-based agricultural company Anderson & Middleton Co., suffered a severe stroke in May 2012. Months later, Edminster was hitting a wall in his care, so his employer hired Allied to help. "It's a horrible thing for him," said Rick Middleton, president and CEO of Anderson & Middleton. "We all feel for him and his family, obviously. But also it's rough for the company. He's a critical part of our business and he's been there for a long time."
Doctors removed part of Edminster's skull to relieve pressure on his brain. For about six weeks he wore a helmet, waiting for a customized plate to arrive so doctors could close his skull and move him into rehab.
Repeatedly, Edminster faced pressure to leave the hospital to begin rehab in the helmet - without his skull being closed up. Doctors, the insurance company, and everyone he talked to said the company that manufactures the necessary piece was behind on orders.
"It felt like we were going down a river on a raft," Edminster said. "We were navigating waters we didn't really understand and weren't prepared to navigate."
Then Anderson & Middleton hired Allied. Droppert handled his case personally, asking questions and making calls. Edminster soon had the part and the surgery he needed.
He faced a similar problem while recovering at the rehabilitation center.
"The insurance company wanted us to be out of the facility and at home," said his wife, Lark Edminster. "They were pushing for an early release, and we had to fight that."
Again, Allied worked with the insurance company, gaining Edminster enough time that he felt physically well enough to go home and continue his therapy on an outpatient basis.
The help from Allied didn't make the recovery itself any easier, but it gave Edminster and his wife the ability to focus on just getting him well.
"We were still on the raft, but now we had a guide to help us," Edminster said.
He's still going through physical therapy and isn't back at work yet, but Middleton is confident he will return, and grateful for Allied's intervention.
"They stepped in and helped (the Edminsters) navigate the hospital, the health plan, the insurance, all of that," Middleton said. "They found a path through it. And from an employer's perspective it gave us comfort ... that there was something we could do that could help them."
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