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Medication Adherence: The Final Frontier

February 13, 2013

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 ...

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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 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."
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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)

Paul Sax is Clinical Director of Infectious Diseases at Brigham and Women's Hospital. His blog HIV and ID Observations is part of Journal Watch, where he is Editor-in-Chief of Journal Watch AIDS Clinical Care.


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6 Reasons Why People Skip Their HIV Meds
Word on the Street: Advice on Adhering to HIV Treatment
More HIV Treatment Adherence Research


This article was provided by Journal Watch. Journal Watch is a publication of the Massachusetts Medical Society.
 

Reader Comments:

Comment by: Wayne Stump (Toronto, Ontario, Canada) Fri., Feb. 22, 2013 at 12:14 am EST
Dear Dr. Sax:

Many thanks for your comments, as always. I had the pleasure of meeting you in person at the 2006 International AIDS Conference held in Toronto, Ontario, Canada, where I live. I have taken a great interest in the matter of medication adherence, particularly in the context of HIV infection, as a person living with HIV infection. I know the importance of adherence to antiretroviral medications because of the biological nature of HIV (its ability to mutate in the presence of moderate antiretroviral "pressure" (less than adequate adherence, or suboptimal antiretroviral regimens such as ZDV monotherapy) versus maximal antitretroviral pressure (as in what is possible with optimal adherence to today's effective antitretroviral medications). I was reminisciing with a friend about my first HIV antiretroviral regimen of zidovudine 500 mg per day (in 1991) taken in five 100 mg doses taken four hours apart, and the difficulty I found this when I was still working full-time, and even lost my dosette (it fell out of my pocket when I was climbing a telephone pole a telecommunications technician). I am amazed at the progess with the newer HIV antiretroviral meds (one pill, once a day, for example--unfortunately I'm still taking more than that number of pills twice a day, but nonetheless still very grateful for these medications!) I'm happy that in addition to studying the best new HIV antiretrovirals, physicians have also understood the human challenge of taking these with minimal error (either totally missed doses or delayed doses). Thank you for your continued interest in this challenge and please accept my very best wishes,

Wayne Stump
Toronto, Ontario, Canada
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