Pioneering Private Patient Advocates

To navigate the U.S. health system, it helps to have an experienced pilot.

Diana McKenzie Photo by Dennis Keim

Krista Hughes and Diana McKenzie have a lot in common.

The two women are Alabama’s first private patient health care advocates, a rapidly growing profession formed to find ways to better cope with a health care system plagued by medical errors, such as misdiagnosis, delayed or missing test results, undecipherable medical bills and overworked medical professionals.

Both Hughes and McKenzie have health care backgrounds and have had first-person looks at the problems. And both are admirers of Trisha Torrey, founder and CEO of the Alliance of Professional Health Advocates, a firm that provides information and support to health care advocates nationwide.

As Congress struggles to address health care issues, the Commonwealth Fund, a think tank, recently rated the U.S. health care system as the worst among the 11 developed nations it analyzed as part of an evaluation conducted every three years.

“I had my own run-in with the health care system,” Torrey says. “I had been diagnosed to the point that it had cost me every penny of my savings.”

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Torrey was misdiagnosed as having a rare form of cancer when in fact she had panniculitis, or inflammation of fat cells. She says it took weeks to get the cancer diagnosis and weeks to get an appointment with an oncologist who sent her for blood work and a CT scan, both of which came back negative for any abnormalities.

But the doctor insisted she had symptoms of lymphoma and did not have long to live. She contacted another oncologist, and while waiting to see him, began researching her diagnosis, and “it became very clear to me that I did not have cancer, no matter what those labs and oncologists thought.” Three weeks later, after meeting with the second doctor, she received confirmation that she did not have cancer.

Krista Hughes

Hughes, founder and CEO of Hughes Advocacy in Birmingham, says the doctor’s office of a friend with breast cancer forgot to send a biopsy to the lab for analysis and the woman had to wait several weeks to get the results, “with three small children, right during the holidays.

“And then, at the same time, my dad had a medical error occur, so it just so happened that I had two medical errors going on in my life.”

She says her father had a kidney stone and the physician prescribed 90 tablets of painkiller when he needed a medical procedure.

McKenzie, founder and CEO of  McKenzie Healthcare Advocacy in Huntsville, has been in the health care industry for 23 years, as a nurse, a clinical nursing instructor and a legal nurse consultant.

“I have been on the front line of advocacy during those 23 years, and I have seen from the patient’s perspective how important it is for them to understand all aspects of their health care and be treated with dignity and compassion, and they need to know that there is someone that cares and hears their voice,” McKenzie says.

Private patient advocacy is a relatively new profession, Torrey says. “As a profession, we have only been around for nine years. These things take a long time to grow, and especially in health care, where there was a perception up until a few years ago, that well, that I get my health care for free so why should I pay somebody for it?

“People are just now beginning to understand that they are not getting what they need from the system, and so, as perceptions catch up to reality, that is where advocacy is growing.”

“With the way our health care industry is going right now, with all the unnecessary tests and procedures, patients just don’t know where to go and how to navigate their own health care journey,” says McKenzie, who started her business last April. “I talked to a lot of people in my community…and I found a great need for an individual health care advocate.

“A lot of Baby Boomers have a lot of parents who are aging, and they are lost. They don’t know how to handle their health care, what the insurance companies are going to pay, what doctors to use. I just kind of did my own survey in the community and I got a lot of good feedback that this would be a service people would be interested in.”

While the Hughes and McKenzie programs are the only two private advocacy programs in the state, Torrey says Alabama really isn’t that far behind.

“Everything is relative, of course, but Alabama isn’t like New York, LA, San Francisco, Chicago, and Alabama doesn’t have the same older populations as Florida and Arizona do. In terms of smaller population states, and of course much of Alabama is very rural,” Torrey says.

But, she says, Alabama is not any further behind than anybody else.

“As a matter of fact, I would probably tell you that there are more advocates in Alabama than in some other states, like Mississippi or Louisiana or out in Nebraska or Colorado. I would say Alabama is right in the middle of the pack,” she says.

Most patient advocacy programs are modeled along lines of a law practice or an accounting firm.

“Pricing is done in a variety of ways,” Torrey says. “All these folks are independent, so they do it differently, just like lawyers have different kinds of pricing. The pricing is going to be dependent on the services being provided. They are going to charge something very different to negotiate a hospital bill than they are to sit by your hospital bed and spend time in the hospital or to accompany you on a doctor’s visit to help you understand what the drug side effects might be.

“Certified advocates can charge more than non-certified. Certification is brand new in 2018,” Torrey says. “But I can give you a range across the country. The lowest pricing I have seen is between $75 and $100, and we actually have someone who charges more than $400 an hour, and she’s got a waiting list.”

“I don’t ever discuss my fees,” Hughes says. “When my clients call me, I do it based on their diagnoses. I base it on how much time will be involved, like a lawyer. Some people retain me on an as-needed basis, almost like a retainer.”

“What I try to explain is that the hospitals and insurance companies have their advocate, and they are paid by the hospitals and insurance companies,” McKenzie says. “With me, I am paid directly by my client, so my allegiance is to my client. I have a range. The one to two hour consultation is $250.” Fees are based on the amount of time she expects to spend and the client’s financial situation.

Torrey says a decade ago private patient advocates were not always well accepted by the medical community.

“When we got started, physicians didn’t want an extra person in the exam room, they didn’t want somebody by the hospital bedside,” Torrey says.

“What they have discovered is that we make them look good. In fact, we are not there to get in the way of anything medical they are doing; we are there to facilitate what they are trying to do. So we are the ones who can often get a drug approved; we are the ones who can get the insurance company to pay for something; we’re the ones who can keep the Medicare patients from returning to the hospital before their 30 days are up; we’re the ones that are protecting their patients from some sort of medical error.

“When you need legal help, you call a lawyer. When you need tax help you call a tax preparer. When you need medical help, you call an advocate.”

Bill Gerdes and Dennis Keim are freelance contributors to Business Alabama. Gerdes is based in Hoover and Keim in Huntsville.

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