A Brief History of Pharmacy Benefit Managers (How They Became the “Shady Middle Men” in the Drug Market)

A few more blog changes

This week, I have some significant life events going on, so it’s a rare week when there won’t be an official blog post. But I also want to announce that some changes are coming to this blog, starting now. I will be blogging over at The Incidental Economist (TIE) for a while!

Ever since I got into health policy and discovered that there are smart people writing about it online, TIE has been my absolute favourite health policy blog. It is one of the main hubs on the internet that is facilitating the ongoing international conversation about understanding and improving healthcare systems.

So, I’m going to try out blogging over there for a while and see how it goes. In the meantime, I will share on this blog the link to each of my posts, but definitely TIE is worth following if you are at all interested in health policy. I will continue to be blogging weekly (but maybe not on Tuesdays every time), and my topics and post lengths and writing style will probably be pretty much how they’ve been here. Onward!

Is the pharmacy benefit manager market competitive?

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This last week, I spoke with someone who works at an insurer. When I asked if it’s relatively easy for them to identify the pharmacy benefit manager (PBM) that’s offering the best deal, they said that it is, with caveats.

Quick sidenote: I’m finding kind people to answer my probing questions about PBMs, but I’ve also faced a fair amount of hesitancy in general. I think it’s because they worry what is going to happen with the information they are giving. I’m committed to being as transparent and unbiased as possible about the information I receive, and I’m equally committed to not disclosing any of my sources. So I guess that means I cannot prove the reliability of the information I’m sharing, but it’s worth it as long as I maintain access to good sources to help me understand this stuff!

Remember that for a market to be competitive it needs (1) multiple competitors, (2) the customers need to be able to identify the value (price and quality) of each competitor, and (3) the customers need incentives to choose the highest-value option.

The PBM market fulfills all these criteria pretty well. There are plenty of competitors (three big ones, several midsize ones, and lots of smaller ones). So, when an insurer submits a request for proposal (RFP), they will get multiple offers. Identifying the value of the proposals received is doable, if a bit tricky, as discussed below. And the insurer has incentives to choose the highest-value option–getting a great comprehensive formulary with the desirable meds makes for happy members, and lowering the costs goes to their bottom line (assuming there are no annoying medical loss requirement issues).

Let’s talk about the challenges that come into play when they try to identify the highest-value option. It’s actually pretty straightforward–these are incredibly complex contracts, to the point that regular healthcare consultants are not deeply specialized enough. And PBMs leverage that by trying to define things in ways that save them money. To the extent that, if an insurer wants to identify the best PBM proposal, they will probably need a consultant that specializes in helping insurers contract with PBMs. They need the help of someone who knows all the PBMs’ tricks.

I won’t even get into all the complexities of those contracts, partly because I don’t know many of them and partly because those details don’t change the big-picture incentives I’m talking about.

But the good news is that, with the right knowledge/assistance, insurers are able to make value-sensitive decisions in the PBM market! In fact, apparently many insurers submit an RFP every few years to make sure what they’re getting from their current PBM is still competitive, otherwise they’re probably leaving money on the table.

So, that’s one question answered. More to come.

Transitioning to Value Instead of Volume in the Drug Market?

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In response to some of my recent posts on pharmacy benefit managers (PBMs), as well as my overall interest lately in understanding the drug market better, someone asked what a value-based PBM would look like. Interesting question!

When analyzing healthcare from a “value versus volume” perspective, realizing exactly what we mean by that is an important starting point.

Consider what we mean when we say that healthcare providers are “rewarded for volume.” This is usually interpreted to mean healthcare providers are paid in a fee-for-service way–they deliver a service, they get paid. Which means they make more money when they deliver more services, so the incentive is to deliver as many services as possible.

And when we say that providers are “rewarded for value,” this is usually referring to some form of capitation, which means they get paid per head (that’s where the capit part of capitation comes from). In other words, providers would, for example, get paid a monthly fee for every patient whose care they are responsible for. Which means they make more money when they deliver fewer services (which, theoretically, happens when they are doing the right things to prevent their patients from getting sick).

These two methods of reimbursement are seen as “good” and “bad.” Capitation and its variations have good incentives (to prevent illness) and fee for service has bad incentives.

But they’re not opposites, like two sides of a coin or something. They are actually two different ends of a single spectrum. That spectrum is the “breadth of products/services sold as a single unit” spectrum. (I should come up with a better name for it.)

At one end of the spectrum, you have people buying very narrowly defined things. Like if a hospital really did send you a bill for every single nursing task and bandage and bag of saline and tablet of acetaminophen you received while you were there. This is the essence of fee for service–buying narrowly defined things. A doctor visit here, a procedure there.

The other end of the spectrum is buying very broadly defined things. Like paying a healthcare organization an annual fee for covering every single healthcare need that you could possibly have during that year, all inclusive. Every surgery and cancer treatment and emergency department visit etc. would be included.

I’ve written about all this before (way back in 2013!), but the way to figure out where on the spectrum the service should sit (i.e., how broadly defined the product/service should be) is to think about it from the patient’s perspective to see what “job” they want done that it’s fulfilling for them.

The easy example is if someone needs a hip replacement, let’s say they’ve tried all the conservative measures and now their job is simply to get their hip replaced and then recover/rehab from that. So why would they pay separately for the surgeon’s time, the OR time, the anesthesiologist’s time, the medications administered, the hardware used, the physical therapy appointments, the pre-op and post-op appointments, etc., when they could just pay a single lump sum to get their job fulfilled?

When we buy a plane ticket, we don’t pay a separate bill for the airplane depreciation, the fuel, the pilot’s time, the flight attendant’s time, the snack, etc., right? No, we just pay for the single plane ticket that includes all the products and services that go into getting us from point A to point B.

Using that principle of identifying the job to be done and then defining the service as broadly as is necessary to allow the patient to pay a single price for getting that job fulfilled will allow anyone to determine where on the “breadth of products/services sold as a single unit” spectrum anything in the world should sit.

So what about the drug market?

Much of the time, we know pretty well how long we’ll be on a medication. If it’s an asthma med, such as an inhaled corticosteroid, usually the patient will be on it for years or decades, so just knowing how much it costs per month is probably the right breadth of services.

Or, if it’s not a chronic medication, such as a cure for hepatitis C, figuring out the total cost of your direct-acting antiviral regimen is pretty easy if you at least know how much each pill will cost you and how many days (weeks) your treatment course will last.

My point is that the drug market, even though you’re typically buying either a short course of pills or a monthly allotment of them, is already “value based” because the breadth of products is attuned to the job you have for the medication (“keep my asthma at bay for 1 month,” or, “cure my hepatitis C”).

How do PBMs fit into all this?

Well, they’re middlemen. As far as I can tell, even though they’re the ones making the formularies, they aren’t really doing anything to actively shift the breadth of products sold one way or another, which is good because it already seems to be sitting on the spectrum in a good place.

Is there a role for including medications in capitated arrangements so that patients’ diabetes and hypertension and heart failure meds are all included in their annual or monthly fee? I guess that’s possible–it would encourage providers to choose cheaper meds, and it would decrease financially motivated medication nonadherence. So maybe PBMs would be involved in coordinating those efforts.

Ultimately, the big improvements that will change the drug market aren’t so much going to come from optimizations in the volume versus value space, but rather they will come from increasing competition and value-sensitive decisions. And maybe from limiting the degree to which PBMs distort the market? But I’m still figuring that one out.

Maybe This Is How PBMs Started Getting Kickbacks?

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In case you haven’t been following all the riveting posts I’ve been writing lately about pharmacy benefit managers (PBMs), here are the main ones:

Pharmacy Benefit Managers: Kind of a Mystery to Me

I’m Still Confused by PBMs But Trying to Fix That

Why Does GoodRx Exist, and How Does It Work

In the “I’m still Confused by PBMs” article, I went through the step by step process of PBMs coming into existence, which they did by filling a need in the market for companies to help consumers pay the correct copay right up front when they buy a medicine.

This time, I want to think more about how they went from that simple software solution (integrating an insurer’s formulary into the pharmacy’s software system so that it can spit out the right out-of-pocket price on the cash register when a patient buys a medicine) to being seen by many as the “shady middlemen.”

The starting point is the position they found themselves in the market. They were responsible for creating formularies for several different insurers. Their goal, assuming the PBM industry is competitive, is to help insurers have the most generous formulary for the cheapest.

I bet at some point, some young upstart working for a PBM had an idea . . .

Young upstart: “If we want to offer a cheaper formulary than our competitor, why don’t we try to negotiate directly with drug manufacturers to lower the costs of the drugs?”

Old manager, feeling superior: “But how are we going to do that? You don’t understand that drug manufacturers only negotiate with pharmacy wholesalers. The wholesalers are the only party to which manufacturers sell their drugs. Nobody else buys directly from the manufacturers, so no one else can negotiate with manufacturers.” And then, with a taunting eyebrow raise, “Unless you are suggesting something radical, like that we start backward integrating to act as drug wholesalers as well?”

Young upstart, undaunted: “Not at all. How about this. Why don’t we pay a visit to a drug manufacturer that is selling a medication that has several competitors in the same drug category and make them an offer they can’t refuse. We could tell them we’ll put their medication in the lowest copay tier and all the other medications in that same category will still be in the middle copay tier. They will sell way more of their medicine and make a lot more money. But, in return, they have to pay us a “rebate” for every transaction of their medication that we process. They still make more money because they’re selling so much more of their medication, and we get some of it.”

Old manager, interest piqued: “And how is this going to allow us to offer a cheaper formulary than our competitors?”

Young upstart, gaining momentum: “We’ll simply charge less for insurers to use our formulary. Sure, they’ll have to pay a slightly larger share of the total cost of that specific medicine, but the lower price we offer them will more than make up for that. And the best part is, everyone wins! The drug manufacturer wins by increasing profit, the patient wins by paying a lower copay, the insurer wins by getting a cheaper overall formulary, and we win because we keep some of the rebate!”

Old manager, ever skeptical: “If everyone wins, then where is the money coming from?”

Young upstart: “The money comes from the other drug manufacturers, whose market share goes down. That profit that they’re losing is being divvied up among (1) us, (2) the drug manufacturer we’re contracting with, and (3) the insurers using our cheaper formularies, some of which will be passed on to patients.”

Old manager: “Ok, that makes sense, but this sounds too good to be true. You haven’t mentioned pharmacies yet–how would this impact them?”

Young upstart: “I was hoping you’d ask. This won’t impact pharmacies at all. They won’t even know about this transaction between us and the drug manufacturer. As far as they’re concerned, all they see is that they’re still getting paid the negotiated price for the medication, it’s just that patients are paying less and the insurer is paying more.”

Old manager, nodding: “So the patient pays less but the insurer pays more. Yet the insurer is saving money overall because our formulary is cheaper enough to more than compensate for that.”

Young upstart: “Exactly.”

And that is what I imagine to be the start of PBMs negotiating “kickbacks” with drug manufacturers. It was all in the name of PBMs being able to offer lower-priced formularies to insurers by orchestrating a way to help some drug manufacturers sell more drugs and get rebates/kickbacks/volume discounts in return.

This surely boosted the profitability of the PBMs that started doing it, which, when others heard about it, started doing the same thing.

Eventually, every drug manufacturer started paying some kind of rebate to PBMs, which means it became a zero sum endeavor overall for manufacturers because the net effect of having a higher market share through a specific PBM but a lower market through the others that made deals with their competitors means that they end up with essentially the same market share, the only difference being that now they are paying money to PBMs to avoid losing that market share.

Shady middlemen indeed. But I can’t blame them for doing it–this is what capitalism and competition is all about. It’s just a market failure that this specific strategy turns out to be a cost-increaser in the market.

The Non-financial Reasons for Unwarranted Regional Variations in Care Delivery

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Ever since the start of residency, the Journal of the American Medical Association (JAMA) has been delivered to my mailbox without me ever subscribing to it. They keep threatening to stop sending them if I don’t pay for a subscription, but I keep finding the journals in my mailbox. Usually I will glance at the titles of the articles and read the ones I find interesting. That is why, this week, I am writing about what I read in the viewpoint article, Reducing Low-Value Care and Improving Health Care Value, by Drs. Allison Oakes and Thomas Radomski.

They start the article by talking about how there’s a lot of low-value care delivered in U.S. healthcare, even in the absence of financial incentives for delivering more care. They cite some studies from places like the VA system and the Alberta, Canada, system (my home province!), showing how they, too, deliver lots of low-value care. This is their great encapsulation of that important insight: “The provision of low-value care when financial incentives are not present suggests that there are other motivating forces that contribute to overuse. . . .”

Next, they talk about regional variation, saying that from one region to another, there are “systemic differences in care delivery.” But how could doctors act so differently from one region to another? Their answer, at least in part, is that “organizational culture influences patterns of low-value service use. Individual organizations have distinct overuse profiles.” I like that phrase: distinct overuse profiles.

And it’s true. Very true. I’ve worked in the midwest, the northwest, and the mountain west, and I see it. For example, almost no one ordered blood ammonia levels at one hospital, and at another it’s an almost expected part of any workup of confusion, even if the patient has no liver history.

Another example: Just today a colleague was telling me about how if she ever ordered a certain kind of fluids (LR), she would get multiple phone calls checking to see if she’d really meant to order that. Evidence is fairly convincing these days that LR is usually better than normal saline, but that hadn’t caught on at her old hospital. At her new hospital, there’s literally a pop-up warning for anyone who tries to order normal saline that says, “LR is better.” And it offers to switch the order to LR for you.

Another example: At my current hospital, I very frequently see a urinalysis ordered on patients who presented to the ED without any complaints that would make me suspect a UTI. And since urinalyses are commonly falsely positive, those questionable urinalysis orders frequently lead to questionable antibiotic administrations. At other hospitals, the ED physicians’ culture is to have a much higher threshold for ordering urinalyses, and even when they are ordered, the likelihood of treating “asymptomatic bacteruria” is much lower.

Another example: The likelihood of the radiologist reading a chest x-ray as having an opacity that could be pneumonia seems to be different from hospital to hospital. And even if the patient hasn’t had any other symptoms of pneumonia, if they have any sort of respiratory complaint and the chest x-ray report says possible opacity “consider pneumonia,” it seems they always end up getting admitted for pneumonia and started on antibiotics.

These are just a few examples of how the practice of clinical medicine is so different from facility to facility in 1,000 tiny ways. And I understand why it happens.

In residency, your practice patterns are being strongly shaped by what your attendings do. But they’re also shaped, to a large degree, by the personal studying you’re doing and by presentations given at noon conferences and morning reports, where the presenter has spent a lot of time reviewing the newest evidence on the topic. There is a ton of active learning, and your connection to the newest evidence is fairly strong. Although, possibly as a side-effect of this, you also seem to add rare diagnoses to your differential more often, and this probably leads to more low-yield testing.

After residency, working as a regular attending not affiliated with a residency program, the focus is very different. The overall goal of practicing medicine is the same–delivering great care for patients–but there isn’t nearly as much active talk about ways your group might be practicing low-value care. (Instead, ensuring adequate coding and documentation dominates the discussion topics.) The connection to the newest evidence is a lot weaker. And there seems to be more of a focus on avoiding malpractice, which leads to having a lower threshold for ordering tests and scans for common diseases, which also counts as low-yield testing when the diagnosis in question is unlikely in that given scenario.

Individual physicians will still learn new things through personal study, but it’s an uphill battle to justify doing something different than your colleagues. So as you take over your colleagues’ lists of patients when you come on service, and as you take over newly admitted patients from the night before, you are frequently seeing and slowly being influenced by how others in your group are practicing medicine. The practice patterns naturally homogenize. I was once asked by a colleague to send an email to my hospitalist group about the evidence backing up something that I was doing because it was different than the other hospitalists.

This is how particular practice patterns spread and homogenize throughout an organization. Combine those effects with the other active pushes for practice pattern changes that come through leadership communications and EMR integrations (like the “LR is better” pop-up warning), and distinct overuse profiles start to make a lot of sense.

All these cultural factors that lead to systemic but regionally different low-value care delivery will need more than simply top-down Medicare reimbursement changes.

I stand by my solution that, if value-sensitive decisions in healthcare became more widespread, the financial incentives for decreasing low-value care would not only change the macro incentives, but they would be strong enough to induce healthcare managers/clinical leaders to go about finding creative and effective ways to make the organizational changes necessary overcome the cultural factors I’ve talked about in this post.

I’m Still Confused by PBMs But Trying to Fix That

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Last week was the first week in a long time that I haven’t had a Tuesday blog post. Sometimes life happens, and that’s ok. My interest and passion for fixing healthcare continues unabated.

Every time I try to remember the important details about pharmacy benefit managers (PBMs) since writing about them a couple months ago, I have to go back to that post and re-read it. This is annoying to me, and it’s a hint that I haven’t grasped them well enough yet. So this post is me trying to process PBMs more thoroughly.

I haven’t yet talked to anyone who works at a PBM (working on that–let me know if any of you readers have any contacts at one!), but pending that additional information, here is what I understand based on all my research.

But first, a meta thought.

Maybe you haven’t noticed in my writings, but I try to describe the problem needing a solution before I discuss that solution. When a solution is presented in the context of a clear explanation of the problem that preceded it, the solution becomes intuitive why it was created rather than coming across as “interesting and comprehensible yet still kind of a mystery as to its purpose or how it fits into the bigger picture.”

For example, before I explain something like bundled payments, I need to clarify the ways that healthcare stupidly separates out so many things that should really be seen as a single job and how that separation of jobs interferes with people being able to compare prices to make value-sensitive decisions.

I believe most healthcare writers fail to coherently explain the problem before they start describing reforms, and it makes healthcare seem way more complicated than it is.

So, what is the context that created a need for PBMs? My understanding is this . . .

When a patient buys a prescription, the price of that medication is the result of a negotiation between the pharmacy and the insurer (unless, of course, the pharmacy and insurer have no agreement, in which case the total price is whatever the pharmacy has set it at). And that negotiated price gets split into two–the patient pays part and the insurer pays part.

At some point along the way, pharmacies and insurers must have decided that it’s undesirable for patients to pay the full price up front and also it’s undesirable for insurers to pay the full price up front.

Think about it. Patients would hate having to pay the full price up front and then get some of that reimbursed by their insurer weeks later. And patients would also hate to pay nothing up front only to get a bill from their insurer weeks later asking them to pay some crazy amount they never would have agreed to. Additionally, either one of those scenarios would create a post-transaction reconciliation nightmare.

The obvious solution would be to get pharmacies to charge patients the correct copayment right up front.

This would require insurers’ formularies and copayment policies to somehow get integrated into pharmacies’ software systems to calculate the price for the patient right then and there when they ring up the medication. This cannot possibly be a straightforward process, especially when miscalculations can cause people to lose tons of money and get very angry. Maybe large insurers have the resources to hire the right people and build the right process knowledge and software, but wouldn’t it be great if companies existed to do this sort of thing for them so they could focus on their core business?

Suddenly, hiring a separate company–let’s call it a “pharmacy benefit manager”–to do this for them makes a whole lot of sense.

Better yet, a large insurer, acting as an entrepreneur, could see this need in the market and create a spin-off subsidiary that could do that job for them and also do that job for a bunch of other smaller insurers. Boost that revenue, right?

Okay, that helped me to process many of the steps I’d skipped the first time I tried processing this topic. I tried to cover too much ground before. I will continue spending a little more time on these topics. I pity the fool who doesn’t find all of this fascinating!

Groups of Passionate People Change the World . . . Join Me?

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Have you ever noticed the electricity and vibrant energy that abides on a university campus? I think it’s more than just the result of thousands of young people collected into one place. It’s the result of big ideas, of people discussing and debating issues they’re passionate about, of them envisioning the world as being different and better through collective action.

I have being going it alone in health policy for too long. This has been useful in some ways–blazing your own trail is the only way to discover new land. But without others on this trail with me who have different opinions, backgrounds, and skill sets, I am not challenged to learn as much or, more importantly, do as much.

I’ve been thinking about this lately because a group of my friends and friends’ friends from medical school recently reconvened (virtually) a discussion group they had from the Cleveland days. (Sorry I missed it guys!) There’s nothing quite like meeting up physically, and maybe one day I can live in a place dense enough with health policy folk to do that, but until then I think virtual is good enough.

So this is my request: If you or anyone you know is passionate about health policy and wants to start talking about it occasionally (maybe quarterly), I want to hear from you. I don’t care if you’re an old retired professor or a young student or just a normal person interested in this topic. As long as you bring passion and questions and an open mind, I want to hear from you. Email me directly at tjaychristensen@gmail.com. And even if you’re reading this 10 years after it’s published, I still want to hear from you.

I don’t know where those talks will lead, but this is how it starts.

Another Article Shows that Price Transparency Tools Don’t Work (Plus My Explanation Why)

I have a bunch of papers I’ve saved to read, and I think it’s time to start going through them.

This one is called Online Advertising Increased New Hampshire Residents’ Use of Provider Price Tool But Not Use of Lower-Price Providers. It’s in Health Affairs, 2021, and was written by Sunita Desai, Sonali Shambhu, and Ateev Mehrotra. I always look forward to reading studies that Dr. Mehrotra was involved in.

Based on the title, you can guess that this paper will be good to challenge my assertions that people can make value-sensitive decisions if they are given the right information. Let’s see what they found!

The background to this study is that price transparency efforts are “plagued by low consumer engagement.” Typically less than 15% of people actually use whatever price transparency tool (usually a website) was provided, and often the number is much lower. So the question is, are so few people using these price transparency tools because they don’t know they exist, or is it for some other reason? Possible other explanations the researchers provide include patients just plain not being interested in using the price transparency information, and patients wanting to use the information but being unable to for some reason.

To answer their question, the researchers launched a “large targeted online advertising campaign using Googe Ads to increase awareness of and engagement with New Hampshire’s price transparency website.” Then, if the ads drove awareness of/traffic to the price transparency website but the claims data still did not reveal any changes in how often patients select lower-price providers, they could conclude that awareness isn’t the main contributor to the ineffectiveness of price transparency websites.

They created ads for three specific services: emergency department visits, physical therapy services, and imaging services, all chosen because they’re generally shoppable (yes, that includes emergency department visits, because the authors acknowledge that a high percentage of ED visits would be more amenable to urgent care!) and because their cost is typically low enough that people will not meet their deductible by receiving the service, which means they’ll usually be paying out of pocket for some percentage of the service.

The ads took people straight to the NH HealthCost website, which uses as its source data actual negotiated prices between provider-insurer diads (oh, the magic of all-payer claims databases!) (gag clauses be damned), although it doesn’t plug a patient’s exact plan or year-to-date spending info into the website to give an exact out-of-pocket cost; the best it can offer is an “estimate of procedure cost” and it also gives a “precision of the cost estimate” (low or high).

After spending $39,000 on ads over the course of 6 months, the website traffic went up from 265 visits/week to 1,931 visits/week. People who clicked on the ads spent, on average, about 30 seconds on the site. I just tried going to the site myself, and 30 seconds is definitely not enough time to truly search for a procedure and use the results to choose a provider. But maybe they returned later and spent more time on the website, which is plausible since the non-ad-related visitors typically spent more time than that.

Voila, awareness can drive traffic to a price transparency website! They cannot exactly calculate what percent of all patients who used one of those three services during the study period visited the website, but best-case estimations are 77% of ED visits, 13% of imaging services, and 54% PT visits. The true numbers may be much lower. But still, it’s enough that you’d think there would at least be some measurable difference if going to the website impacted provider selection.

Nope. Not at all. When compared to other states (as a control group, using a difference-in-differences analysis), there was absolutely no measurable impact on provider selection.

Before reading this paper, I was a little surprised at the title. But now, having read the paper and checked out the website myself, I’m not surprised.

Think about it this way: Have you ever compared Amazon prices on your phone when shopping at a brick-and-mortar store? I think a lot of us do that. Americans seem to be very interested in saving money and getting the best value as often as we can. But if we’re at Walmart and the best we can get when we pull up Amazon on our phones is, “This item will cost approximately $10 less than what you’re seeing right now in Walmart, and the precision of this estimate is low. Also, we can’t say anything useful about the quality of this product since there are no helpful reviews.” How influential do you think that would be for people? It almost seems like the risks of ending up with a more-costly or lower-quality product are high enough that you might as well go for the sure and familiar thing right in front of your face. I suspect it is the same with provider decisions.

The investigators summarized this perfectly when they said, “Our findings emphasize that awareness of prices does not simply translate into price shopping and lower spending. There are numerous barriers to using price information. People might not know the details of their benefit design to infer their out-of-pocket expenses. Customized out-of-pocket spending estimates may be critical.”

Agreed. They nailed it. And another thing is critical: easy-to-understand and relevant quality information. I’ve still never seen a real-world research study that’s been able to give patients both exact out-of-pocket prices and relevant quality information side by side. Those two details, plus insurance plan designs that require patients to pay more if they choose a higher-priced provider, are all essential to actually impacting patient decisions about where they will receive care.

Think of these efforts to get patients to alter their provider decisions as a bridge. This bridge has to span a deep chasm 30 metres wide. If the bridge uses three piles, each supporting a 10-metre long deck, the only way to cross to the other side is by having all three of those decks in place at the same time. Even if you build two of the three decks, almost nobody is going to cross that bridge. Likewise, very few patients will risk choosing a different provider than the default one (the nearest one, the one their friend recommended, the one their doctor mentioned, the one they’ve gone to before, etc.) unless they have all three of those pieces in place.

So, this study is useful in showing that awareness can drive a lot more traffic to shopping tools. That’s an important insight. But it was not designed to be a test of how much giving patients all three decks of that bridge will impact their provider selections. I doubt I will ever see a significant change in provider selection as a result of a price transparency effort until patients have all three of those required pieces of information at the same time. Which makes me mourn all over again that CMS did not fund the study I designed for the Utah Department of Health. It would have been the first to build that bridge and then watch what happens to patients’ provider selection and prices and quality in the market.

“The Doctor Said I’m Crazy”

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This last week of work, I had a lot of patients with functional disorders, and it has motivated me to help more people in this world understand functional disorders and the people who experience them, which will probably be all of us at one time or another.

First, let’s start with my favourite thing: an exhaustive, mutually exclusive categorization.

I categorize all symptoms into three broad groups: organic, functional, and malingering.

Organic symptoms are caused by the body. For example, if you have a bowel obstruction and your stomach is super distended, that will trigger the nausea receptors in your GI tract, and you will have significant nausea.

Functional symptoms are caused by the mind. These symptoms are felt just as surely as organic symptoms are, it’s just their source is different. For example, if you have a major psychological stressor, it will activate nausea receptors in your cerebral cortex, and you will feel nausea just like if you had a bowel obstruction. The common symptoms of functional disorders that I see all the time are pain (anywhere, but often abdominal pain, chest pain, back pain, headaches), generalized symptoms (fatigue, weakness), psychological symptoms (brain fog, depression, anxiety), GI symptoms (nausea, diarrhea), and neurologic symptoms (altered sensation, focal weakness). Any of those symptoms could come from an organic source or a functional source.

Malingering is straight up lying. The person doesn’t have symptoms, they’re just making them up so they can get something. For example, if someone really likes the high some IV diphenhydramine plus promethazine can give them, they’ll say they have nausea and itching and that the oral versions of those meds don’t work.

I believe malingering is rare. But functional symptoms are very common.

Sometimes symptoms are a mix of organic and functional. And sometimes the symptoms started out as organic but perpetuate as functional.

Functional disorders are diagnoses of exclusion, meaning we have to exclude the other likely organic causes before we can give the diagnosis of a functional disorder. This is because we currently have no lab test or imaging modality that will be definitively diagnostic for a functional disorder. Sure, we can find objective things as a result of functional disorders; people will truly get diarrhea, which is pretty objectively identifiable. And people will get metabolic alkalosis if their functional nausea has been causing them to throw up all their body’s acid. But no test will be able to definitively identify the cause of that diarrhea or that nausea.

Because functional disorders are diagnoses of exclusion, patients will first get worked up for increasingly rare organic disorders until, eventually, the doctor determines that even though there’s still a small chance they’ve missed something organic, the likelihood of the patient’s symptoms being from an organic disorder is small enough that it’s no longer worth further testing, and they should instead proceed with trying to treat the functional disorder to see if that resolves the symptoms. This means that, sometimes, the diagnosis of a functional disorder will be wrong. That’s the nature of the statistics of diagnoses of exclusion.

When a doctor gives a functional diagnosis, they’ll usually say something like, “All of your tests came back negative; I think it’s being caused by stress. You need to see a psychiatrist or a therapist.” And what the patient hears is either, “I don’t believe you’re having nausea,” or, “I think you’re crazy.”

And what does the patient do next? They find another doctor. The workup starts all over again. Increasingly rare causes are tested for. The patient Googles their symptoms and finds all sorts of things online that lead them to request testing for rare disorders, which are often expensive and/or invasive.

Sometimes, if the second round of testing turns something up, they are even more convinced the first doctor was horrible. And they latch onto that diagnosis, even if there’s a good chance it was a false positive or only explains a part of their symptoms.

I try to avoid all of that by explaining to patients the three categories of disease and then being very clear about two things. First, that functional disorders are not malingering; I tell the patient I am absolutely not saying they are making up these symptoms. I tell them functional symptoms are felt just as truly as organic symptoms are felt. Second, I tell them that it’s normal for our minds and bodies to cope in any way they can with something, and often that means creating physical symptoms. And with that understanding that it’s caused by the mind, the treatment is to see a professional who can pull that stress/trauma/hurt out of their mind and help them process and resolve it. That is the only effective treatment for what they have, and it will resolve their symptoms after that core cause is treated.

The challenge is finding a professional who can accomplish that because there’s still so much we don’t understand about the mind and how to help people process those things. Finding the right one and the right treatment modality may take several tries. But it is possible to cure functional disorders!

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