February 13th, 2013

Medication Adherence: The Final Frontier

Treatment of HIV has become so amazingly effective that when it fails, it’s no overstatement to say that it’s usually because the patient is not taking the medications.  There are all kinds of provider-related reasons for this — inadequate patient education, prescribing and dispensing errors, failure to address language or education deficits — but here I want to focus on the patient-related causes.

In other words, on non-adherence.

(This used to be called “non-compliance.”  That term has become un-PC; for some reason non-adherence is viewed as nicer. Please explain.)

Non-adherence in HIV care comes in a variety of flavors, including:

  1. Denial — “I feel fine, so why should I take those medicines?  Yes, you tell me I have HIV, but I don’t really believe it’s a dangerous condition, or even that I have it, since as I said, I feel fine.
  2. Stigma — “I won’t take those medications because each dose reminds me that I have HIV. And that makes me feel awful again and again, so until we can solve that problem, no chance I’m taking HIV meds.”
  3. Chaos — “You say I should take these medications, but how can I do so when my life is so horribly complicated because of family issues [or addiction or other medical problems or psychiatric disease or homelessness or …], so I’m going to ignore that recommendation to go on meds, and take my chances.”
  4. Deceit — “I’m taking the medications exactly as you prescribed.  I rarely, if ever, miss a dose.  Yes, my pharmacy told you I have not refilled my one-month supply of meds since 2009, but that doesn’t change the fact that I’m taking the medications exactly as prescribed.  I told you that already.”
  5. Hypersensitivity — “I get side effects to everything.  Literally everything. So I might leave the office today with a prescription, but I won’t fill it, because it will make me sick. Look, when I told you this, and you said that all medicines might have side effects, you proved my point.”
  6. Sicko — “Sure, I’ll take the medications if insurance covers the cost.  But I lost my insurance, so rather than investigate getting on COBRA or an AIDS Drug Assistance Plan (ADAP) or some other program to keep me covered, I just stopped my meds. And that was 6 months ago.”

I’m sure there are others, but this list covers most of them. Note that these are not mutually exclusive, and some of the knottiest adherence problems come when more than one of the above is operative. Note also that I’m not counting the people who simply disappear from care — the “engagement in care” or “linkage” issue — which is a huge problem and responsible for lots of the drop-off in the infamous treatment cascade.

But the multifactorial nature of poor adherence is one reason why studies of adherence interventions so often have negative results. How can any single intervention address all of these factors?

Another reason for the negative studies is that the vast majority of patients do take their antivirals correctly — and this good med-taking behavior is probably especially common among those with the wherewithal to sign an informed consent for a clinical study. Most of these folks don’t need any help at all, so the intervention looks no better than the control; this study is an excellent example.

Yet if we can’t identify ahead of time the small fraction of our patients who will be non-adherent — and study after study says we can’t — how can we target our interventions to the people who need them the most?

(Next up:  An Adherence Intervention that Actually Works — But There’s a Catch)


4 Responses to “Medication Adherence: The Final Frontier”

  1. Michele H says:

    t’s great to have a classification like that. I’m currently working with someone who is a combination of 1 and 3 and 5. Hypersensitivity may not be the exact term, more like intolerance. It’s true it must be hard to take meds every day that make you feel lousy, when missing will only kill you in the distant future which can seem very far.

    I have lost a few patients just because they wouldn’t take their meds for any of the reasons you listed. I always say to myself that in some countries, they’d give anything to have access to these meds, but here, psychosocial issues seem to be part of the HIV epidemic. Maybe we should have some of the “deniers” watch a movie with endstage patients on it (since these patients are not so visible anymore), and cartoons of rapidly replicating virions, and sign off that they saw the movie and understand what the consequences of nonadherence are.
    Best, Michèle

  2. Christie says:

    Where would cognitive disability be classified. This weekend I had a patient that knows he has HIV but does not know recall the medications he takes, runs away from home on a constant basis, leaving family frantically looking for him. He cannot be institutionalized or which institution would take him. He shows up at Emergency room,time and time again, returns home and repeats the cycle. His popular phrase is “sorry I donot remember’ to almost everyone question.

  3. Holly says:

    Also a major problem is under-diagnosed, or poorly treated mental health disorders. Until there are better ways to link our patients to mental health providers with experience in treating HIV patients, this will continue to be a huge problem.

  4. David Ferris says:

    Sadly #6 is more + more common these days, with the economic downturn + the expense of the medications to the State. I need to start keeping track every time one of my patients shows up off meds due to “insurances issues.” Medicaid managed care plans now contract with pharmacy benefit managers — giant for-profit corporations — to create an extremely complex system that is a challenge for even health care professionals to navigate, much less the marginalized population these companies are supposedly “managing.” I know you agree and read your recent Annals article on generics to save $1B and know you meant to say “despite all efforts to investigate” instead of blaming the patients for this dangerous new trend. Thanks and apologies for the criticism b/c I know this blog is supposed to be fun!

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