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The Tale of My Toe (Nail Fungus)

by Ken Kleinberg | January 18, 2018

Anonymous Guest Post (well, OK, it’s from Ken)

 

What follows is an unpleasant story about a toenail fungus. (Sorry.)

Actually, mine is pretty bad – it’s on most of my toes, and it’s been there for years. My primary care physician was adamant: “Don’t waste your time and money. Most treatments don’t work, some are dangerous, and the fungus will probably come back anyway.” Well, some of the thick nails are ingrown and hurt. Plus, perhaps, I’m vain. Either way, I was going to rid myself of that fungus.

Or so I thought. It turns out the clinical aspects of treatment paled in comparison to negotiating the frustrating world of providers, payers, and pharmacies.

Promises

Off I went to a dermatologist. The most common treatment, I was told, was an inexpensive oral drug called Terbinafine. However, given its potential to damage the liver, a prescription required a prior lab test.

Fortunately, there was a newly approved topical medication, Jublia. (Remember the purple boxing toe on TV ads?) Its manufacturer was eager to gain positive buzz from doctors and patients. My dermatologist sent the prescription to an out-of-state Internet pharmacy he said could offer me the med for free. Since there was no payer to worry about, I didn’t even check the price.

Unfortunately, after the required 10 months of applying Jublia every evening, it had little to no effect.

Wasn’t the provider and payer operating on my behalf? There was no patient-centric approach that anyone had taken here.

Costs

Back with the dermatologist, he turned to Kerydin, another new topical medication. But this one was going to be expensive: A tiny bottle that lasted a few weeks was $500, and the treatment was, again, 10 months.

But there was a twist. The Internet pharmacy explained it could offer Kerydin to me as a self-paying customer for $50 a bottle – but only if I was first denied by insurance. The pharmacy sent the first fill for free, and my provider submitted the claim to insurance.

Now the bureaucracy kicked in. About a month went by. I had already used the initial little bottle. I called the Internet pharmacy, my provider, and my payer. Apparently, my provider sent incomplete info to the payer. Since the Jublia had been free, my insurance company didn’t have a record of it. (That’s a danger with any free or self-paid medication – who should notify insurance?) More information was faxed. I received several calls from the pharmacy asking whether I planned to self-pay.

Finally, the claim was denied. At that point I asked myself, “Why shouldn’t insurance pick up at least some of the cost if my provider believes Kerydin is the best solution for me?”

Eye Openers

The Explanation of Benefits from my payer opened my eyes. It presented a well-organized list of the various treatments for nail fungus, in order of approval, with the length of time each should be tried. Kerydin was at the bottom of a long list – below the Jublia I had tried – and would have taken a few years to reach.

Even though costs were not shown, I certainly never saw anything as comprehensive as this list from my provider. As you can imagine, he was not happy that the payer questioned his judgment and said his office would continue to pursue the matter.

Two more months went by. I had more important things to do in my life – and, after all, I expected the provider and payer to be operating on my behalf. When I called my provider, I was told the woman working on the insurance submission was on vacation, but it looked like she had closed the case! I was not happy about that.

More Evidence Required

A week later the provider’s office manager calls. The case is reopened, but my insurance company requires the provider to take a nail sample and examine it under a microscope.

This surprised me. I had two questions.  Why hadn’t my physician done this before prescribing meds in the first place? Did the insurance company require a sample because it didn’t trust the provider – or because it wanted to stall or frustrate me?

I agreed to drive 20 minutes to the provider, and the office manager told me I wouldn’t be charged for the visit. But when I said I could come at noon, they told me the whole office is closed between noon and 1 for lunch. (I can’t think of another business in town that does that.) After moving the appointment and spending an hour of MY lunch break, the office took the clipping. I hoped for the best.

Even Less Coordination

The very next day, the Internet pharmacy called me. I was pretty excited. But when I asked if they had heard from my provider or payer, they said they were just following up from months ago!

More months passed. I called the payer. –No update. I called my provider. The office was puzzled, as it had faxed the results that same day of the clipping. Whatever process or system that checked for progress – if any – was not working.

I wish I could tell you that I had now started the med, it was working, and that the payer was picking up some of the cost. But no joy yet.

Oh, and did I mention that the latest payer EOB shows that the provider charged for the clipping visit?

Lessons

So what did I learn?

  • Providers don’t always give a complete picture of your options and how things will play out. Even if they do, it doesn’t seem to mesh with what insurance considers best practice or is willing to pay for.
  • Internet pharmacies must have an interesting business model if they can offer a drug for 1/10 what they would bill the payer.
  • Despite the rhetoric in the media, no one involved took a patient-centric approach.

In the end, my primary care physician might have been right from the start to not even try. – But I believe in science, evidence-based medicine, and our ability to work together. This was only a toenail fungus – nothing compared to the serious, chronic, and difficult scenarios that play out with real pain, suffering, and cost every day.

We need to work better, together, to create a converged system where treatment plans and evidence are shared between providers and payers, costs are transparent, information flows with confirmed delivery, and patients are treated like customers. We can and need to do better.

4 responses to “The Tale of My Toe (Nail Fungus)”

  1. Marcia Noyes says:

    Ken, your story is one of tens of thousands with similar outcomes. I question whether we shouldn’t just go back to paying out of pocket and holding only a catastrophic insurance policy for cancer, heart attack or stroke.

    I’m wondering if we all did that, whether or not medical costs would tumble, positive user experiences would increase and we would live healthier lives. The frustrations in dealing with what you have dealt with are no longer worth the cost.

    • Thanks for the reply – you are on to something, and frankly, with such high deductibles and co-pays, for many individuals and families, for non-catastrophic care, it is a self-pay system. One concern is that unless patients shop around, they won’t always know what prices are reasonable –
      the insurance company has helped play a role with that thru their denials. As an interesting addition to the toe story, my provider now says he plans to mix and dispense his own meds and bypass the insurance company and the pharmacy! That again brings up the concern about how what he prescribes makes it into the insurance system and the kinds of checks they do across providers for drug-drug interactions, etc.

  2. Sue Ann says:

    Welcome to the world of pre-authorizations. Your doctor’s office DOES NOT GET PAID TO DO THIS (or referral work either, FYI).

    It’s your insurance, you are the policyholder, and any help your doctor’s office gives you is above and beyond. The pharmacy should have been helping you, but they DON’T GET PAID TO DO THIS EITHER.

    Your Doctor arranged for you to get free samples and tried to work with the pharmacy — which was OUT of STATE — I’m surprised you are even in Network with them.

    Given all of this, are you surprised?

  3. Thanks so much for replying – much appreciated. I do however have to ask about your “does not get paid to do this” and “above and beyond” explanation. The costs of care for many drugs and treatments for those unfortunate enough to need them are beyond what most people can pay without insurance. Isn’t that the whole point of insurance pools? Seems that the doctor is not going to have many patients or get paid much for serious conditions unless they participate in the system which helps to keep them in check. It would be difficult for me to place a claim if my doctor doesn’t provide me with enough information and evidence I need to get paid back. I’ve had some practices tell me they don’t take insurance, and I walk. We recently wrote about the Aetna/CVS deal – that’s an interesting scenario where you could have your meds prescribed, filled, and paid for by the same umbrella entity. Value-based care is certainly the goal here! Thanks again for commenting – it’s a valuable discussion.

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