On being unintentionally non-adherent

I wonder how many of us have included “better adherence to my prescription drugs” in our list of New Year’s resolutions? The answer is likely near zero. It doesn’t even make health.com’s list of the Top 10 Healthiest New Year’s Resolutions, yet study after study concludes that the negative impact of medication non-adherence on our healthcare system is enormous.

This is the first of a two-part blog on adherence, primarily because it’s such an intriguing topic but also because I made a New Year’s resolution to write more blogs this year.

Think of adherence as quite simply: is a patient outside of a hospital setting taking their prescribed medication(s) with the correct frequency and quantity? Lets scope this discussion to lifelong chronic medications, meaning something you take for the rest of your life to treat a chronic disease or condition, like diabetes, high cholesterol, or multiple sclerosis (MS). I’m going to use MS often for my examples as I have first-hand experience with that. Finally, let’s further simplify things by looking mainly at oral formulations. Some people don’t like needles or other funky ways of administering drugs but most people can swallow a pill.

On the surface, non-adherence seems like a solvable problem. You are told to take a pill every day, you understand the importance to your health and that it will ultimately save you and everyone else time and money … but then you don’t. To put this into economic reality, IMS in their 2013 Institute for Healthcare Informatics Avoidable costs in US health care says “Between $100 and $300 billion of avoidable health care costs have been attributed to nonadherence in the US annually, representing 3% to 10% of total US health care costs.”. This sounds like a problem worth solving that should easily make a top 10 list.

What is wrong with us that we can’t even adhere to this simplest of tasks? Decades of research into why people don’t adhere has resulted in a categorization of the over 200 factors thought to influence patient adherence into those who intentionally don’t adhere (i.e. they choose to not take their pills) and those who unintentionally don’t adhere (i.e. they’d like to take their pills but don’t always). Studies differ on the exact numbers, but the majority of patients belong to the unintentionally non-adherent category. I confess that I am a member of that club.

If you are intentionally non-adherent, then encouraging you to become more adherent likely takes you into the world of behavioral change, and that’s hard. I recall a prominent Boston healthcare venture capital investor telling me that he no longer invests in any company that has a value proposition based on changing either physician or patient behavior as none of his prior bets there were successful.

On the other hand, if you are unintentionally non-adherent, it may not be as hard to improve on your result. I’m going to look at some of the reasons why unintentional non-adherents don’t take their pills exactly as prescribed and what the current approaches are to drive better results. Part two of this blog will look at some of the emerging approaches, largely based on technology for patient engagement. Here are the three most common reasons for non-adherence:

    • I can’t afford my medication
    • I forgot to take my pill
    • I ran out of pills to take

Let’s take a bit of a side trip and look at my situation with respect to my MS medication. I like to consider myself to be informed and conscientious when it comes to my healthcare. I’d be a hypocrite if I did anything but try to be 100% adherent to my MS disease modifying therapy, which costs $93.59 per daily pill and reduces the probability of me having a relapse. I’m also on Crestor. If you asked me what I thought my adherence rate to be, I’d tell you close to 100%. I do travel a lot, don’t have a very routine lifestyle, and have Early Onset Grumpiness, so truthfully I sit at probably closer to 90%. What is that extra 10% worth to the pharmaceutical value chain (pharmacy, distributor, and manufacturer)? Assuming I live for another 30 years, that 10% would amount to over $100,000 of incremental revenue and 36 more trips to the pharmacy and all of the additional front of store purchases that I may make – for one patient only. Find 9 more like me and that’s a million dollars.

But hold the fort. Turns out I’m not as adherent as I thought. In the spirit of Gregory House’s “everybody lies” mantra, I decided to try to measure my actual adherence – but how?

Ideally, there’d be some magic technology that would detect exactly when I took a pill and internet-of-healthcare-thing that data. I remembered the hype back in 2011 around the MIT spinout startup Vitality and their GlowCap smart pill bottle but alas, their website had this message for me: “Thank you for your interest in GlowCaps but we are unable to take any new orders at this time. NantHealth is planning a re-launch of Vitality/GlowCap/GlowPack products and services in 2016. Please check back here for updates.” More on emerging technologies like this in part two of this blog but for a sneak preview, check out the amusing Cheating Death clip on sensor-enabled pills from The Colbert Report back on August 8, 2012.

I could always just write it down but if I’m going to forget or am too busy to take a pill then I’m going to forget or be too busy to write that down. So I then went to measurement based on prescription possession. If I could get data on how many pills I actually got from my pharmacy over a long period of time then that would be a reasonable proxy to how adherent I am. Sure, that doesn’t tell whether I actually took the pill or not but I’m going to be no better than that measurement. So I went in search of an app that could do that. My main criteria being that I wanted it to be based on actual real pharmacy dispensing data and not data that I had to enter and therefore potentially “lie” about. My second criterion was that the app needed to be independent of a particular pharmacy or a particular drug. I’m not that loyal to my pharmacy so I want the data to be available to me regardless of which pharmacy I use. Turned out to be harder to find than I thought. I ended up choosing the My Medicine Cabinet membership benefit of innoviCares, as it was able to scoop up my historical prescription history for my Crestor and give me a report card on my adherence. I was shocked and dismayed at the result:

Wait … what … one star? I thought I was better than that. A one star innoviCares score means that I am on average, 8 to 14 days late on a 90 day prescription, which means I’m closer to 80% adherent. That’s still pretty good for an asymptomatic condition like high cholesterol and probably better than the vast majority of patients but I should be doing better.

I have no reason to believe I’m any different on my other medications as they are in the same drawer/travel bag and I get them from the same pharmacy. That $100,000 left on the table is now $200,000 as well as a lot of lost sales of chips and magazines from those extra pharmacy visits I don’t make.

This made me wonder why my physicians and my pharmacy do not engage me more on my adherence. Sadly, my physicians don’t have the data. They could and should … but they don’t. That’s why they always ask me what medications I am on (even though they have prescribed them) and sometimes, but rarely, whether I am taking them, as I should. To which I reply with a confident “yes” – everybody lies.

Providing I go to the same pharmacy, they have the data and should be able to engage me on my adherence, but they don’t either. This is somewhat surprising since, on top of the positive healthcare reasons, they stand to gain more from frequent repeat business. Historically, some pharmacies have participated in programs like those from Rx Canada that are paid for by big pharma to incent pharmacists to engage patients on their refill reminders but they tend to be for a specific drug. Pharmacy chains and banners are also starting to adopt patient engagement software (e.g. TELUS Pharma Space and Health QR) but they don’t meet my criteria of being independent of the pharmacy. There are also emerging apps like POP Rx, but they don’t (yet) meet my criteria of automatically using real pharmacy data. Ironically, I used Google Health back in 2008 while I was still living in Boston and it met both of my criteria … but Google shut that service down in 2011 due to “lack of widespread adoption”. Sigh.

I can categorically say that cost is not a factor for me in my adherence as I pay for a good drug plan that covers the majority of the cost of my drugs and I can stomach my out of pocket co-pays. But that is not true for many Canadians. Even with a drug plan, too many people will balk at getting a refill due to their co-pays. Patient benefit cards and programs like innoviCares help with that and, through engaging patients, have been shown to correlate with higher adherence. STI’s recent “STI Reimbursement Programs Correlate with Higher Medication Possession Ratios” discussion paper demonstrates a 30% relative improvement in medication possession ratio (MPR) over a 12-month period for patients benefiting from a reimbursement solution program.

With respect to helping me to remember to take my pill, the current state of the art seems to be the daily text message, although I’ve started to use the Pill Alert app and it gives me reminders via my Apple Watch. I was skeptical at first and thought the daily reminder would just be annoying, but I have to admit that it does work on occasion. Amusingly though, my MS medication text alert arrives every day at 8:47 AM, sometimes twice and from 9 different phone numbers each with different area codes and all containing the same “please lot into your account” spelling error. I’m sure there’s an explanation for this.

Finally, the main reason why I don’t adhere, because I’ve run out of pills, is usually related to getting a prescription renewal and not a refill. Refills are generally easy to do and I feel in control of those. It’s when my current prescription runs out of refills and I need to get a new prescription that things go all pear shaped. I recently stopped adhering to my Crestor for over a week while I watched my pharmacy duke it out with my physician’s office over lost faxes. Frustrating but if that was for my MS medication, then I would need to go back and repeat the whole initiation process at considerable time and cost to everyone.

To wrap up part one of this blog, tackling unintentional non-adherence is worth doing. Current and historical approaches are inadequate and haven’t really moved the yardstick much. The promise lies in increased adoption of technology in patient engagement, which I’ll tackle in part two.


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