By the time Tessie D.* knew she was really in over her head, the stack of medical bills was six inches thick. And like a lot of people who find themselves in her situation, the bills weren’t even hers.

She was home when the call came: Her fiancé, a rock climber, had been in a serious accident while climbing a sheer wall in Eldorado Canyon State Park. John (not his real name) fell 60 feet, breaking ribs, an elbow, and his collarbone and suffering a collapsed lung, among other injuries. Worst by far was the severe traumatic brain injury he had endured, despite wearing a helmet. He’d been evacuated by helicopter to St. Anthony Hospital.

5280 Health January 2018
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“I took my son to see him for maybe the last time,” Tessie recalls. “Even after it was clear he would survive, they didn’t know if he would ever wake up.” Medical bills were the last thing on her mind, especially because John had “good” insurance, through Kaiser Permanente.

Months of hospital care and inpatient rehab followed. In the midst of it all, the bills started arriving. And because of mail-forwarding issues, some of the bills were already in collections by the time Tessie turned her attention to them.

“In the beginning, this was my project, like my job,” she says. It’s a familiar position for many caregivers: dealing as much with the financial side of health care as with the care itself. She spent hours a day on the phone with insurance representatives and providers but got nowhere. “Nothing on the list was getting crossed off,” she says. And somehow the charges were much more than she’d expected, based on John’s policy. Exhausted and frustrated, she just wanted to be done with it. Then a friend found someone who she thought might be able to help Tessie.

Judy Lawten is an independent patient health care advocate in Colorado whom Tessie hired to guide her out of the billing juggernaut. Patient advocacy, a relatively new field in the sprawling health care industry, arose in the past decade to deal with exactly the kind of situations Tessie faced: complex, expensive, intractable health care odysseys that can quickly swamp anyone not used to dealing with the massive, intricate, and sometimes dysfunctional health care system in our country.

Health care reform spurred consumers to focus on costs, and, Lawten points out, millions more people have coverage today because of those changes. But the industry itself is still opaque, even on questions as simple as what a particular procedure will cost. “There is a great effort put forth to make sure we can’t figure it out,” says Trisha Torrey, a former advocate who lives in Florida. Those twin forces—consumers’ increased awareness of cost and the industry’s obfuscation of it—helped create the conditions for a class of advocates who can help patients manage their care.

There’s no one organization that tracks all health care advocates, or even a single definition of the profession. But in 2009, Torrey founded a national organization called the Alliance of Professional Health Advocates to provide support and aggregate resources for practitioners. She says APHA has about 600 members nationwide and roughly 30 in Colorado. (Torrey guesses that the number is growing by about 10 percent a year.)

For a health care advocate, she adds, “there’s no standardized skill set. We have two umbrellas: one is health care—navigating second opinions, clinical trials, even medical tourism. And the other is cost, mostly insurance claims and billing.” Some, like Lawten, are full-service advocates who will do everything from handle insurance issues to attend doctor’s appointments.

“People usually come to me when they’re overwhelmed,” says Lawten, who spent more than three decades as a critical-care nurse and then in the medical device industry before switching careers to co-found Sagemont RN Healthcare Advocates in Boulder four years ago. She only handles insurance issues in the context of broader advocacy work for clients. But the two are often inextricable because, in such a complex system, it’s easy for a patient to make an innocent mistake that can exact a high cost.

Barbara S., a Sagemont client, knows just the kind of assumption that can get a family into billing trouble. In 2016, her husband took his mother to the emergency room for a suspected heart attack. Doctors couldn’t find a specific problem, but offered to keep the woman there under observation. “My husband said, ‘That sounds like a great idea,’  ” Barbara says. But Lawten, who was present (her services can include attending medical appointments), asked the doctor to clarify the meaning of  “under observation,” a formal term that essentially categorizes care as outpatient and can shift additional costs to the patient. “Judy helped us avoid a potentially huge ER bill,” Barbara says.

A few advocates, like Victoria Caras, who founded Aspen Medical Billing Advocates in 2009, have particular expertise in billing and insurance issues. Caras is a former attorney who learned she had an aptitude for health advocacy when she was hit with a ski injury and cancer diagnosis around the same time; she lost her health insurance in the middle of the ordeal. “The biggest challenges aren’t things like billing errors, but rather not understanding how insurance works, how to appeal a claim denial, or negotiating with providers if you think a bill is excessive,” she says. “We probably have access to the same information the client does. We just understand the fine print that is almost impenetrable to most people.”  The intricacies of health care costs—how bills are processed, why some providers are out of network even though they work with in-network hospitals, or misleading terms like “under observation” that carry major consequences—are so vast and myriad that even many medical professionals don’t understand them.

Even so, hospitals and insurance companies dabble in the advocate space too. But they’re not the same as independent advocates; for starters, they aren’t hired by the client. Jill T. has multiple spinal meningiomas, a rare—and in her case, recurring—condition that has required regular treatments including chemotherapy, biannual MRIs, and several spinal surgeries. After a 2006 surgery that involved multiple doctors and facilities in Colorado and Utah, and countless calls to her insurer, the company gave Jill a point-of-contact in its health advocate program, but she found it lacking. “I talked to a different person every time,” she says. “The first 15 minutes of every conversation was a rehash of my story.” As with Caras, the learning curve was steep; Jill manages her own care and billing advocacy (“with a shoebox full of bills,” she says), but says she definitely would have used an independent advocate had one been available in 2007.

It took Lawten a solid nine months to sort out Tessie’s billing issues. “It was the most complicated case I’ve done,” Lawten says. “The billing paperwork took over an entire table in my house.” In the meantime, John continued rehab, although he never fully recovered (his family assumed responsibility for his medical care after he was discharged). Through negotiations and identifying mistakes, Lawten reduced the total bill from over $60,000 to under $9,000.

Prospective clients generally have little idea what an advocate can do for them, Lawten says. That might be in part because the field is so new. But the health care industry is so intricate that the role of advocates will likely only grow, Torrey says.

In Tessie’s case, a significant chunk of the balance was due to an improper referral for inpatient rehabilitation. Lawten spotted the error when she looked at the bills, “but the untrained eye wouldn’t have picked it up,” she says. It still took months to fix. That kind of complexity is going to be an unwelcome part of health care for some time. Generally, says Lawten, patients aren’t trying to avoid legitimate bills, even if there’s a little sticker shock. “People want to do the right thing,” she says. Sometimes, they just need someone on their side to make sure the right thing comes at the right cost.

*For privacy reasons, 5280 Health is withholding the last names of sources featured in this story.

How to Find an Advocate

The first national certification test for patient health care advocates will be administered this spring—though it’s not required, and the profession is lightly regulated. Professional training is also limited, and only a few higher-education programs exist, including a master’s degree program at Sarah Lawrence College in New York, the first of its kind. Here, some expert advice for finding an advocate you can trust.

  • Check association memberships. They’re not infallible, but they help weed out pretenders and scam artists. Two options are Alliance of Professional Health Advocates (the organization Trisha Torrey founded) and the National Association of Healthcare Advocacy Consultants.
  • Have a full discussion. An initial consultation should cover your situation in detail. Beware of any advocate who guarantees specific results or who doesn’t ask for more than a bare-bones sketch of your issues.
  • Ask about cases similar to yours and how the advocate helped those clients.
  • Listen to your gut. If you don’t have a good rapport, move on; you’ll be in close contact with the advocate for months or longer, and you’ll be sharing personal information.
  • Protect yourself. You’ll need to get official HIPAA permissions for the advocate to talk to your insurance company and providers on your behalf. Remember: HIPAA permissions can be tailored to limit the disclosure of personal information. To lower the risk of identity theft, do a background check on your prospective advocate. The Colorado Bureau of Investigation offers criminal records searches for less than $7 each.
  • Ask about costs. There are varying fee structures that depend on each specific case. An advocate might charge by the hour, require a monthly retainer, or agree to be paid a percentage of costs recovered. Regardless, you should get a clear outline of the fees and a legal contract to sign that is clear and easy to read.

Be Your Own Best Advocate

Independent advocates can be vital allies in handling complex health care billing issues. But you can also help yourself by following these guidelines:

  • Learn your policy. Know the deductible and coinsurance for in- and out-of-network treatment, and which specific conditions and procedures are and aren’t covered. You’ll get detailed information in your enrollment packet. It’s dense, dull reading, but do it.
  • Check everything and keep records. Is the provider in your network? Ask the provider and the insurer, and get a record of the responses in case the claim is rejected later. Document all communications with insurance companies and provider billing departments.
  • Learn what it will cost and negotiate in advance. Fairhealthconsumer.org helps estimate costs for common procedures. If a provider is out of network, call and get a price quote up front. You may be able to negotiate a discount for cash payment of your portion.
  • Study your itemized bills and Explanation of Benefits (EOB) documents. Coding errors and mischarges are common—as many as 40 percent of bills may contain some kind of error, according to widely cited research by Stephen Parente, a health finance professor at the University of Minnesota. Your EOB tells you what insurance will cover and what to expect when you get a bill.
  • Don’t ignore your bills. They will go to collections and incur additional fees. Call the provider and ask whether there is a discount for cash payment or if they can set up a payment program. Inquire about financial assistance, which may be available at income thresholds well above the federal poverty line.
  • Know your rights. Colorado’s medical insurance Hold Harmless clause [CRS 10-16-705(3)] may offer some protection from liability for “balance billing” or out-of-network (OON) charges at a facility that is otherwise in-network.