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A frustrating experience with the american healthcare system

the problem

Shortly after moving to Chicago from Vancouver, Canada in 1999 I developed a facial rash. I thought it would resolve on its own, but after several weeks of persistent itching it didn’t, so I went to see a primary care doctor. She told me she thought the rash was the result of dust mites in my apartment.

So I moved. But the rash failed to resolve. When I went back to my primary care physician, she asked me questions about my stress, diet, alcohol consumption, and environment. She told me to stop wearing makeup and then re-introduce one product at a time to see if I was allergic to something I was putting on my face. I spent weeks doing this. Again the rash failed to improve. I went back several times, but no suggestion she made ever made a difference.

Eventually, I became suspicious that she was simply offering whatever random idea came into her head without putting any real thought into it. So I decided simply to use the steroid cream she’d prescribed (it had worked to some extent). I wasn’t happy about exposing myself to the risks of long-term steroid use, but I felt I had no choice.

too little time

I didn’t think much about it at the time, but I now understand why each visit to my primary care physician was so short and why she never outlined a reasoned approach to diagnosing and treating my problem. It wasn’t that she didn’t care. It was that in traditional fee-for-service medicine (where doctors bill a patient’s insurance for payment) primary care physicians have on average only 15 minutes to see their patients, seven-and-a-half of which are often taken up by a nurse measuring the patient’s vital signs. Further, primary care physicians practicing in the fee-for-service model see on average 20 – 22 patients a day and often work late into the night documenting in their electronic medical record all the elements that insurance companies require for reimbursement. The reason my primary care doctor never spent more time thinking about my problem, in other words, was because she simply didn’t have any more time to spend.

searching for a cure

In 2008, after giving birth to my son, the rash became much more severe, so I decided to go to another doctor, a dermatologist. My husband, Dr. Alex Lickerman, worked at the University of Chicago, affording us the ability to receive care from some of the best medical minds in the world, so I felt optimistic about trying again.

The dermatologist spent 10 minutes asking me questions and looking at my face and told me I needed allergy testing. When it came back negative, he told me to avoid dairy and report back. He also thought that my rash might be caused by something in my environment, so when avoiding dairy didn’t help, he told me to stop wearing makeup—again—and then to reintroduce one product at a time. I did as I was told and reported back that my rash remained unchanged.

a lack of access

At no time did I feel confident that the dermatologist was giving my rash more than cursory attention, much less doing any reading in the medical literature to try to puzzle out what it was. Not only did the dermatologist fail to make his thought process transparent, he also remained mostly unavailable to answer my questions. I had no direct phone number or email address with which to reach him. He did do one thing that was helpful, though: at my last visit, he diagnosed my condition as atopic dermatitis.

After the dermatologist told me that he had nothing else to offer me besides the steroid cream I was already using (which was only partially effective) I gave up hope for an effective treatment. Unfortunately, the flares were now coming and going almost weekly and interfering with my sleep. Desperate, I called the medical center again, hoping to find a new dermatologist who would be more aggressive in trying to identify an effective treatment, if not a clearer diagnosis. After several appointments with this second dermatologist—including one where she took a biopsy from my face after her resident said she thought it might be a form of skin cancer—she confirmed it was indeed atopic dermatitis. The best she could offer me, she said, was a drug called Protopic, which works by decreasing cell activity in the immune system. There are numerous risks associated with the use of Protopic, including an increased risk of cancer. In order to avoid exposing my son to the medication, I was instructed to use it only at night.

accepting my condition

The Protopic cream worked. Unfortunately, it only did so after turning my face bright red and causing it to itch uncontrollably for five hours. Using it at night made it almost impossible for me to fall asleep, but two days later my face would return to normal. Unfortunately, the improvement would last only for 1 – 2 weeks and then the rash would flare again. Thinking that this was the best I could hope for, I continued using Protopic for several years.

Then one day in 2011 while presenting to clients in a meeting I began to feel my neck getting hot. Over a span of minutes, the rash crept up my neck and onto the side of my face. One of my clients suddenly exclaimed, “Rhea, there’s something wrong with your face!” I explained it away with a wave of my hand, saying, “Yes, I sometimes get this. It’s nothing.” But I knew I had to leave the meeting before my rash became wet and I developed the overwhelming urge to start clawing at it.

i break down

When I got home I broke down in tears and told my husband I couldn’t take it anymore. I told him I refused to use the Protopic any longer, that I couldn’t live with the rash, and that I needed his help to find a solution. I asked him to delve into the medical literature to find every study related to atopic dermatitis and to come up with a new plan. I needed to know that someone was going to investigate every last possibility to find out if my condition could be cured. I knew it was long shot, but I would at least finally be able to know in my heart that if there was nothing more to be done we had done everything there was to do and that it was now time for me to focus on living with a chronic skin condition instead of trying to cure it.

my doctor gets to work

So the next day I went out with our son so my husband could find and read all the latest research on my condition. When I returned home at the end of the day, he presented me with a list of nine ideas backed by research that he thought might help, which he’d wrote down on a piece of paper in order of the least invasive, cyanocobalamin (vitamin B12) cream, to most invasive, an acid wash. He wrote a thoughtful email detailing his findings, which I immediately sent to my dermatologist.

i’m cured

After two days, I heard nothing back, so I called and left a message asking my dermatologist to write a prescription for the first medication on the list, the cyanocobalamin cream, which a small, but well-done study in the British Journal of Dermatology had suggested might help. After hearing nothing back again, I finally gave up on my dermatologist and turned back to my husband, who agreed to write the prescription himself. After only two weeks of using the cyanocobalamin cream my rash—at long last—completely disappeared. A year later, I stopped the cream only to discover to my surprise and delight that I was cured. The rash never came back.

what i learned

What my frustrating medical experience showed me in stark terms was this:

1. Our medical system is broken in many ways, but perhaps none more significant than the way it limits a physician’s time.
2. The gap between the cutting edge of research and routine clinical practice is much larger than anyone realizes.
3. The fee-for-service world in which physicians rely on insurance reimbursement for payment incentivizes all the wrong things:
   • Overutilization of healthcare resources
   • Inefficient utilization of healthcare resources
   • Oversized patient panels

doctors need time

Because of these misaligned incentives, primary care physicians, who care for 20 – 22 patients a day, are often able to do a good job—but rarely a great job. A patient with a difficult-to-diagnose condition requires a doctor who has the time to take a thorough history, perform an in-depth physical exam, think carefully and critically about their patients’ problems, and scour the medical literature when the answer isn’t immediately obvious. Patients need doctors trained at the best academic institutions in the country who treat them like family, doctors who make themselves available to answer their calls 24 hours a day, who answer their emails promptly, and who take the time to outline their thinking and proposed plan of action with complete transparency. What I needed was concierge medicine without the exorbitant price tag. That type of care is now available and is called direct primary care.

doctors need to read

Studies show it takes 17 years for basic medical research to be translated into routine clinical practice. Seventeen years! The reasons for this are complex, but in my mind, one of them is almost certainly connected to the reason that two dermatologists were unable to help me: they simply never read the study in the British Journal of Dermatology that held the key to my cure. Why? Because the system in which they practice—fee-for-service—doesn’t give them the time. Yet it took my husband less than four hours to find the study and suggest an intervention that cured me after thirteen-and-a-half years.

the medical system is broken

Why do most people feel they aren’t being heard by their doctors? Because doctors simply don’t have adequate time to listen to them! As a result, doctors are burning out at an alarming rate and performing at an even lower level. Patients are frustrated, over-utilize the medical system, and are often subjected to interventions that are unnecessary and expensive—expensive for the patients and expensive for their company if they’re insured through a self-insured company health plan.

direct primary care is the solution

In direct primary care doctors have more than enough time to spend with each patient, the opportunity to practice the best medicine possible, and the emotional space to care for their patients like family. Direct primary care is just like concierge medicine except with a price tag that’s roughly equivalent to a monthly cell phone bill. I was being cared for by my husband in exactly the same manner he’s now able to care for his patients at his direct primary care practice, ImagineMD. In fact, my experience was one of the reasons he started it.

I’m convinced that the type of care afforded by direct primary care is what we all should demand from our doctors—not just that they spend more time with us but adequate time. That they spend the time they need to produce the amazing results our modern healthcare system and research infrastructure promises, the time to find and apply the most cutting-edge treatments that exist.

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