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Provider Perspective #1: Tips for Addressing “HIV Fatigue”

Dr. W. David Hardy shares his clinical experience and insight for addressing “HIV Fatigue”, an issue that may occur among HIV patients that have received long-term treatment and even newly diagnosed patients.

As we know from clinical experience, maintaining a behavior change over a long period of time is challenging. It requires ongoing and conscious prioritization and enforcement in spite of competing demands and interests. “HIV Fatigue,” or “Treatment Fatigue,” refers to patients’ intentional or unintentional drift away from antiviral medication adherence, safer sex practices, and other behaviors to prevent transmission.

This fatigue not only harms the patient’s health, but can put others at risk as well. Potential consequences of HIV Fatigue include:

  • Reversion to previous or new behaviors of medication nonadherence
  • High-risk sexual behaviors
  • Drug use
  • Loss of a sense of personal responsibility to halt HIV transmission
  • Viral resistance to medication
  • Increased probability of HIV transmission
  • Growing numbers of new HIV infections

Beginning with Physician Behaviors

How do we prevent or address HIV Fatigue in our patients? By starting with our own behaviors. If we as health care providers convey monotony and cynicism, we can expect our patients to do the same. It is critical to consistently check our own thinking, attitudes, and practices when providing HIV care. You may have given your well-rehearsed HIV talk countless times, but remember a newly diagnosed HIV patient is hearing it for the first time. Deliver it with patience and compassion each and every time.

Tips for Addressing Fatigue in “HIV Veterans”

While modifying our own behavior is a manageable first step, changing our patients’ behaviors is more challenging. Let’s begin with long-time treated patients, sometimes called “HIV veterans” or “legacy patients.” Often, these are the patients for whom we have the least concern. However, just because a patient has reported perfect adherence for 10 years does not mean that he or she is immune to HIV Fatigue.

To identify and address HIV Fatigue in HIV veterans, consider doing the following:

  1. Discuss medication adherence at every visit. Never assume that past adherence ensures future adherence. By discussing adherence at every visit, you might discover that your patient has a lapse in insurance coverage or pharmacy benefits.
  2. Discuss sexual and drug use behavior with all patients. Never assume that elderly, divorced, widowed, or religious patients don’t have sex. Remember that living a full life with HIV commonly includes sexual activity.
  3. Discuss the positive aspects of living longer with HIV infection. Focus on the significant life events (e.g., births, marriages, job promotions, travel), which patients would not have experienced had they not adhered to treatment.
  4. Discuss opportunities for and potential benefits of HIV diagnosis disclosure. Many long-surviving patients carry the psychological burden of well-suppressed but undisclosed infection. Encourage patients to relieve this burden and protect others through disclosure.
  5. Reinforce a sense of personal responsibility. Encourage long-term survivors to serve as ambassadors in the effort to end AIDS by maintaining their own good health, keeping their virus suppressed, and championing safer sex and drug use practices.

Tips for Addressing HIV Fatigue in Recently Diagnosed Patients

Patients diagnosed with HIV in the past 3–5 years face a number of unique challenges to adherence. The HIV landscape is very different today from that of the early days of the epidemic. Most current patients are unfamiliar with the ravages of HIV and AIDS seen in the 1980s and 1990s, and so they might not share a similar sense of potential mortality. Meanwhile, many of the once well-funded AIDS service organizations that provided basic necessities have closed down or have reduced capacity at the same time that the proportion of newly HIV-diagnosed patients living in poverty are increasing.

Following are innovative approaches that HIV care providers may use to address the fear, embarrassment, and isolation that these patients experience:

  1. Devote additional time and clinic visits to build a relationship. Prior to initiating antiretroviral therapy (ART), build a solid educational and interpersonal foundation with your patient.
  2. Link your patient to a support organization. Work with the counselors at AIDS service organizations to find the most appropriate, trusted support group for your patient.
  3. Link your patient to an experienced and trusted HIV veteran. Establishing a relationship with a fellow patient as a mentor may provide your newly diagnosed patient with the non-medical assistance that only a HIV-positive person can supply.
  4. Discuss your patient’s knowledge of and comfort with safer sex and drug use practices. Don’t assume that this knowledge is common to all at-risk persons. If your patient understands the practices, but is having trouble negotiating with partners, arrange time to role play the scenarios.
  5. Begin to instill a sense of healthy respect for HIV. Empower patients not to fear or forget their infection, but to actively suppress it with simple, modern medicines and a positive attitude of self-worth and self-care. Discuss the consequences of unsustained ART adherence to their health and their partner’s health, such as risk of viral breakthrough, treatment failure, decreased CD4+  T cell count, increased HIV morbidity and mortality, and HIV transmission.
  6. After ART is initiated, discuss adherence at every visit. Identify real or potential adherence challenges, which resulted in or may result in missed medication doses, and troubleshoot with your patient to address those challenges. Check in on these solutions at subsequent visits.
  7. Begin to instill a sense of personal responsibility. Start encouraging newly diagnosed patients to participate in the effort to end AIDS by adhering to treatment and practicing safer sex and drug use. Compared with non-adherence or inconsistent adherence, sustained ART adherence has profound effects on overall health, such as consistently suppressing viral load, maintaining high CD4+ T cell counts, preventing AIDS, prolonging survival, and reducing risk of HIV transmission to almost zero.

Published: September 25, 2017

Related Resource

Claborn KR, Meier E, Miller MB and Leffingwell, TR. A systematic review of treatment fatigue among HIV-infected patients prescribed antiretroviral therapy. Psychol Health Med 2015;20(3):255-65.

About the Author

W. David Hardy, MD

Dr. W. David Hardy joined Whitman-Walker Health in Washington, DC in October 2015, as Senior Director of Evidence-Based Practices, leading the Research Department at this historic, HIV and LGBT-focused community-based health center. He serves as ACTG CRS Leader, MACS/SHARE Site PI, DC Cohort Site Co-PI, DC CFAR Member and Co-Investigator for the DC Martin Delaney HIV Cure Collaboratory (BELIEVE).  Prior to joining, he served as Professor of Medicine at the David Geffen School of Medicine at UCLA and Chief of the Division of Infectious Diseases at Cedars-Sinai Medical Center in Los Angeles. He also served as chief medical officer of a biotech company called Calimmune overseeing two phase I trials of gene-modified CD4+ T cells and stem cells as a strategy to cure HIV infection.