Why Patients (and Doctors) Delay HIV Therapy

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In the U.S., it has long been known that, even when advised of the benefits of early antiretroviral therapy (ART), a large proportion of patients qualified for treatment will turn it down. In fact, according to the U.S. Centers for Disease Control and Prevention (CDC), of the 902,000 Americans diagnosed with HIV, only 363,000 were actively on ART in 2012.

It was largely assumed that a lack of patient readiness and/or understanding was at the heart of this statistic. However, a study conducted in 2013 by the University Hospital Zurich has shown that the reluctance to initiate ART extends not only to patients but to their doctors, as well.

The study, which was conducted in 34 sites across Europe and Australia, surveyed patients who had been diagnosed with HIV and were under a doctor's care for at least 180 days. Of the patients in the cohort, 67% were diagnosed from one to four years ago, while 28% had been diagnosed five or more years previous.

Among the surveyed physicians, 78% had five or more years of experience treating HIV, while 90% had more than 50 HIV-positive patients in their care.

Previous Barriers to HIV Therapy

Previous surveys had identified that the main barriers to therapy among patients was the high pill burden and high potential for drug-related side effects. Doctor reluctance, meanwhile, was largely influenced by such factors as continually changing treatment guidelines and contradictory expert opinion as to the "correct" time to start ART.

With current generation drugs boasting lower pill burdens and fewer side effect—as well as a movement toward treating HIV at CD4 counts of 500/mL and above—those barriers are seen to be largely removed.

Instead, patients today seem less cognizant of the benefits of early therapy, while doctors feel that many of their patients are simply unprepared to commit to treatment, often delaying ART for, not months, but years at a time. According to the survey:

  • 47% of patients simply "did not want to think about HIV."
  • 50% of those qualified for therapy stated they were "not ready," while 33% felt "ambivalent."

The main reasons cited were either a "lack of symptoms" or the attitude that "I rely on my body to tell me when to start."

By contrast, doctors regularly delayed ART either because they had "not known the patient long enough" or felt the patient was "too depressed" to start. Additionally:

  • 93% of the doctors surveyed believed that current treatment recommendations were appropriate for their patients.
  • However, in real-life practice, only 51% initiated ART for patients with CD4 counts below 500 cells/mL, while only 16% believed that it was appropriate for patients with CD4 counts over 500 cells/mL.

The disparity in these figures highlights more than just a general reluctance among treaters. They may, in fact, reflect lingering doubts among those who have seen guidelines move in one direction in the past, only to retreat a few years later when unforeseen consequences appeared.

Moreover, the apparent incapacity to overcome attitudinal barriers suggests that the traditional dialogue about patient readiness has not yet evolved to reflect the current dismantling of the "HIV exceptionalism" of the past decades, whereby patient autonomy often overrode informed patient care. If this is the case, it may simply be an issue of "playing catch up" as policymakers strive to narrow the gap between clinical evidence and clinical practice.

With HIV testing now recommended for all Americans age 15-65—rather than just those in "high risk" groups—it is hoped that the stigma and misinformation associated with HIV with being significantly lifted.

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