Those of us who have spent too much time in hospitals tend to think of insurance companies as cold and heartless, but when I got a call last August from Carolyn M, a former nurse employed as a case manager for my Medicare Advantage plan, something clicked.

Her call was a routine check to see how I was doing following a three-day hospital stay for an epididymitis infection last summer. At the time I was busy farming and wheeling about as well as working my editorial job. Carolyn and I had had no prior contact. But by the end of that first call, she knew not only that I lived on a farm, but also my age, marital status, history as a para and countless other medical facts about me. I also told her I wrote about medical topics and was editor of New Mobility magazine.

She reciprocated by telling me she had more than 30 years nursing experience, having worked all over the nation as a military wife. Her experience was broad — cardiology, poor people, teens with psychological problems, people with SCI, people in hospice who were dying. She had also been a nurse trainer. When I heard of her SCI experience, I knew she would understand my situation, wherever it led.

And three months later it led to an unexpected and frightening place: in bed with a stage IV non-healing pressure sore that required flap surgery and six more months in bed. The underlying bone infection could do me in.

Appeal, then Appeal Again

Carolyn called again, another check-in call, but she knew nothing of my latest crisis. When I told her I was now looking for a plastic surgeon with flap experience, she said that she had worked as a nurse on a floor where an excellent plastic surgeon sent his SCI patients. His name was Dr. B, the same doctor I was already thinking of contacting.

But I had a more pressing immediate need. My primary care physician had ordered home health nurses to care for my wound, and the poor quality low air loss mattress and bed frame my insurance provided for home use was aggravating my shoulder and depriving me of sleep. Carolyn said she would be happy to look into other possibilities and get back to me.

In the meantime I searched online for wound therapy beds. A reputable website, WoundSource, listed 117 models of powered or fluidized wound therapy beds. I had heard of Hill-Rom’s Clinitron air-fluidized sand bed, but I was surprised to find other companies with air-fluidized or powered wound therapy beds — ArjoHuntleigh, Joerns, Stryker, Sizewise, Span-America, MedicusTek, James Consolidated, ROHO and Cork. Air-fluidized bed systems are considered the best, and the most expensive, but for the most part, they can’t be rented for home use. The gold standard — the Clinitron — can only be sold or rented to hospitals and other institutions. This was no help, since I wanted to recuperate in my home with my family, not in a nursing home.

I found another website, Cascade Health Solutions, located in my home state. They also listed more than 100 different models, most of them made by different companies than I had seen on the WoundSource site, many of them much less expensive. How could there be so many choices, and how could prices range so widely, from a few hundred dollars at Cascade Health Solutions to $50,000 on the WoundSource site?

I called Hill-Rom and asked the director of clinical services, Tricia, about the wide disparity of choices, and I told her about my situation and medical history.

“The cheaper ones are pharmacy grade knock-offs,” said Tricia. “They are the equivalent of the poor-quality drugstore wheelchairs you get from McKesson for $150. They’re not medical-grade,” she said. “The larger problem is there are no enforceable industry standards, no testing procedures based on reliable data, so anything goes.”

“But the others are too expensive, even if I pay a 20 percent co-pay,” I said.

“They cost a lot but they’re engineered, based on medical needs, they’re adjustable and computer-smart,” she said. “Listen, you have a stage IV complicated wound with prior scar tissue from an earlier flap. Also peripheral artery disease, a blocked artery in your pelvic region, spinal cord injury for more than 50 years, and diabetes. Your skin is more than 70 years old. Your ability to heal and stay wound-free is not the same as when you were a younger para. You’re in denial. You want to talk about affordability? — the truth is you can’t afford to have another wound like this.”

Tricia was right. But I still couldn’t afford the best beds.

“So what can I do?”

“I’ll let you in on a little secret,” she said. “If you go through multiple appeals and denials and have your surgeon document your need in a very specific way and never give up, you can force your insurance to consider your case on an individual basis, and they will have to cover it for home use if your documented needs match up with the bed’s specific features.”

“So what is Hill-Rom’s best wound therapy bed after the Clinitron?”

“For home use, I would say the P500 with a suitable frame.”

Can a Case Manager be a Patient Advocate?

I called Carolyn and told her what I had learned. By now I knew that most nurses, doctors and insurance employees knew little or nothing about specific wound therapy beds. But when I mentioned the Hill-Rom P500, she said she knew that bed from her nursing experience and had a high opinion of it. She then asked if I had a case manager. The truth is I was skeptical that an insurance case manager could truly care about her patients. I saw them as primarily obligated to keep the company’s costs down.

“No,” I said.

“Would you like me to be your case manager?” she asked.

It was then that I realized I needed help. I needed someone who could navigate within the system. I needed a case manager who could also be a patient advocate.

“Yes,” I said.

Right away Carolyn went to work on trying to get a P500 approved, but it was a long shot at best. She had to navigate through multiple levels of protocol and red tape. She succeeded in getting me a slightly better bed, but my shoulder was getting worse, and good sleep was rare. Most insurance systems automatically deny appeals, and that is exactly what had happened with the P500.

And it wasn’t the last denial. After more than three months of appeals and denials, dozens of phone conversations with Carolyn, three different letters of medical necessity written by Dr. B and persistent phone an email pressure on my part, finally — when it seemed I would be stuck with an inferior bed — surprise! — the approval for a P500 mattress with Care Assist bed frame came in.

“This is great, I’m so happy for you!” said Carolyn. “This is the first time I’ve ever been able to make this happen.”

“Really, the first time?” I asked. “What did we do right?”

“You were a strong advocate. You made your needs known in a specific, instructive way. You weren’t shy. You actually taught me things about spinal cord injury that I didn’t know. And you didn’t give up.”

“And you really did want to get what was best for me,” I said.

I had known from the first day I talked to Carolyn that I liked her, but it never really hit home for me that she could be a committed patient advocate as well as my case manager until the night before my flap surgery. She called at 7 p.m., when she was getting off work, to tell me that she had just convinced her supervisor that my case should be handled as an individual exception, and that getting the bed I needed and wanted was now a real possibility.

I was more than pleased.

Then she said something I never expected to hear from an insurance company employee: “I’ll be praying for you that the surgery goes well,” she said. “And so will my supervisor.”

I paused to let it all sink in. ‘Thanks … that really means a lot to me.”

This is the fifth installment in Journey to the Far Side of Tomorrow, a six-part blog series chronicling our editor Tim Gilmer’s unexpected immersion into the world of flap surgery and all it entails. Read the first installment here,  the second installment here,  the third installment here, and the fourth installment here. Look for the fifth part in mid-April.