Since the discovery of HIV nearly 40 years ago, advances in HIV care and treatment essentially have turned what was once a death sentence into a chronic, manageable disease. The US Food and Drug Administration (FDA) approved the first antiretroviral drug in 1987. Nearly 20 years later, in 2006, the first single-tablet combination antiretroviral therapy (ART) regimen was approved. Since that time, ART regimens have become increasingly tolerable and convenient.
The number of people diagnosed with HIV infection decreased slowly between 2014 and 2018.1 In 2018, the Centers for Disease Control and Prevention (CDC) reported 37,881 new cases of HIV in adolescents and adults in the United States (a 7% decrease compared with new cases in 2014),2 bringing the estimated number of people aged 13 years and older with HIV to 1.2 million.3
The CDC noted, however, that roughly 80% of new HIV cases in 2016 were transmitted by people who were unaware of their HIV status or who were aware but not receiving treatment.1 Only 86% of those living with HIV in the United States at that time were aware of their diagnosis.1 Of those, only 65% were receiving treatment and only 56% were considered to be virally suppressed, which is defined as viral load less than 200 copies/mL.1
Despite the improvements in and simplification of ART regimens, HIV treatment and retention rates remain at suboptimal levels. The low rate of viral suppression is especially disheartening given the protection afforded by maintaining an undetectable viral load.4
Treatment as prevention has been promoted by the CDC and other organizations as a strategy to help end the HIV epidemic.4 Data from a study assessing more than 100,000 condomless sexual acts between heterosexual couples or homosexual couples — in which 1 partner was HIV positive and had achieved durable viral suppression and the other partner was HIV negative — showed no evidence of viral transmission.4
The Undetectable Equals Untransmittable (U=U) campaign is an important part of the HIV care and treatment narrative. Anecdotally, this message has not been appropriately understood or conveyed by many providers of health care specifically those who do not provide direct HIV care and treatment.5
Prescription of and adherence to ART for people living with HIV (PLWH) positively affects their health and decreases transmission of HIV. However, it is challenging to provide timely follow-up for HIV treatment after diagnosis, and, thus, care often is suboptimal. Providers attempting to link PLWH to HIV care and facilitate continued care must use a multimodal approach.
Patients with HIV often have multiple comorbidities that make holistic care difficult. Mental health conditions, substance use disorders, and socioeconomic difficulties often affect PLWH. Although screening patients for these issues is mandatory in HIV clinics funded by the Ryan White CARE Act, privately funded clinics may conduct such screenings less frequently.
Linkage to Care
The relationship between PLWH and their provider(s) and other clinical staff is extremely important. In our clinic, a Linkage to Care Coordinator contacts every newly diagnosed patient. Our practice complies with the HIV care continuum, a public health model that outlines the steps PLWH should go through to achieve and maintain viral suppression.1 The steps include:
- Diagnosis of HIV;
- Linkage to HIV medical care;
- Receipt of HIV medical care;
- Retention in medical care; and
- Achievement and maintenance of viral suppression.
The Linkage to Care Coordinator is a staff member who is well versed in the complex nature of HIV and works to mitigate potential barriers to care, such as lack of insurance, lack of transportation, low health literacy, and other sociodemographic factors. Before creation of the coordinator role, many patients referred to HIV care at our clinic were never successfully linked to care.
Our clinic found that using a Linkage to Care Coordinator increased the number of patients who are linked to care and remain engaged in their treatment and decreased the time from diagnosis to initiation of ART. This staff member uses a clinic-supplied cell phone to communicate with patients via text, providing appointment reminders, troubleshooting issues related to transportation, and opening a pathway of communication that allows patients to reach out to clinic staff in real time.
Education about HIV is an extremely important part of the care model. Although education should be an iterative process, clinic staff members firmly lay the foundation during the patient’s initial visit. Over time, we have learned what is most important for specific populations and tailor education accordingly for each patient. For example, discussing the potential to have a healthy future pregnancy typically is on the agenda for newly diagnosed women of childbearing age.
All patients need to hear that with initiation and adherence to ART, life expectancy is far greater than it was during the early years of the HIV epidemic. Education surrounding a diagnosis of HIV vs AIDS also is important. Patients typically do not realize that AIDS is caused by HIV. In the early days of the AIDS epidemic, a diagnosis of AIDS (CD4 count <200 cells/µL or ≤14%) was considered a death sentence. As knowledge and understanding of HIV advanced, this concept has changed. Patients who are adherent to their ART regimen can expect to live a normal life span.
I enjoy telling my patients, “AIDS is nothing but a number.” Patients tend to be relieved when they realize their lives are not defined by the numbers they have at diagnosis.
Although education is tailored to each patient, I make certain to mention several things to all newly diagnosed patients:
- It is OK to ask questions, and patients may need to ask the same questions several times before they truly understand the answers.
- Patients are the expert on their diagnosis. If patients are educated about their condition, it can ease the stress they may encounter when they hear stigmatizing comments.
- By understanding HIV in general terms, patients can become advocates for decreasing HIV stigma without disclosing their HIV status. Patients diagnosed with HIV may have a hard time accepting their HIV status. A patient’s inability to disclose their HIV status to members of their support system has been documented to decrease retention in HIV care.6
- “What are 3 things you need the answer to today so that you can sleep tonight?”
The questions I typically receive often are extremely simple to answer and provide tremendous relief. They range from, “Can I still have sex?” to “How will I obtain my medicine if I lose my insurance?” No matter the questions asked, this initial education lays the foundation for a successful provider-patient relationship.
Special Attention to Comorbidities
People living with HIV are at increased risk of comorbidities that can decrease their ability to remain engaged in HIV care and maintain durable viral suppression. Common comorbidities in PLWH include mental health and substance use disorders. Although these disorders are treatable, many PLWH are uninsured or underinsured and do not have access to specialists to treat these conditions. Special attention to routine screening for these conditions should be part of routine HIV care and follow-up appointments.
Using modules in the electronic health record, our clinic employs the Patient Health Questionnaire (PHQ) to screen patients for depression (Table). Initially, the 2-item tool (PHQ-2) is completed; if a positive result is obtained, then the nursing staff is prompted to complete the PHQ-9. The General Anxiety Disorder 7-item (GAD-7) scale is used to screen for anxiety. Both the PHQ-2 cascaded to the PHQ-9 (if needed) and the GAD-7 are used on a routine basis but no less than annually.
Patients who need additional evaluation for depression or anxiety are referred to a mental health coordinator, who determines what services would provide the most benefit and initiates referrals as needed. Available services include evaluation and treatment by a psychiatrist and counseling and therapy provided by a licensed clinical social worker.
Impact of COVID-19 on Retention in HIV Care
The coronavirus disease 2019 (COVID-19) pandemic shifted much of the HIV care provided at our clinic to telehealth. Patients’ fears of contracting COVID-19 and organizational guidelines changed the ability to perform in-person visits. Although the physical examination is an important aspect of HIV care, over the past year we have found that it may not always be the most important aspect of care.
Since adopting telehealth modalities, the clinic experienced an increase in adherence to follow-up appointments. Despite the need to use nontraditional means to conduct laboratory assessment, including facilitating blood testing at off-site and drive-through locations, viral suppression rates have remained largely unchanged, averaging 87% to 88%. In addition, the number of patients receiving therapy and counseling provided by an in-house licensed clinical social worker increased after the transition to telehealth.
Linkage to care and adherence to follow-up care in HIV treatment are important for improving health outcomes for PLWH and decreasing the number of new HIV infections. Strategies to increase retention in HIV care and treatment must use a multipronged approach individualized for each patient. Patient-provider relationships are extremely important and are begun during initial linkage to care. This relationship is further solidified through continued education and clinician-guided patient empowerment.
Screening to identify comorbidities that may affect treatment adherence is paramount to providing patient-centered care. Identifying potential barriers to treatment adherence, including undiagnosed or untreated comorbidities, also positively affects outcomes. Providing care that is fluid and meets the changing needs of PLWH, such as offering telehealth options, also can improve outcomes and increase trust between patients and providers.
The provider’s role is to offer relevant, patient-appropriate education within a context of trust. They also must be open to providing HIV care and treatment that is congruent with the patient’s healthcare goals and objectives. The primary goal must always be that the patient is considered and empowered to be the expert of their diagnosis.
Aubri Hickman, DNP, APRN, FNP-C, AAHIVS, is the Director of the Ryan White Program at the University of Mississippi Medical Center’s Adult Special Care Clinic, in Jackson; Deborah Konkle-Parker, PhD, FNP, FAAN, is Professor of Medicine, Department of Medicine, School of Population Health and the Harriet G. Williamson Chair of Population Health Nursing at the University of Mississippi Medical Center in Jackson.
1. What is the HIV care continuum? US Department of Health and Human Services. Updated February 4, 2021. Accessed February 14, 2021. https://www.hiv.gov/federal-response/policies-issues/hiv-aids-care-continuum
2. Centers for Disease Control and Prevention. Diagnoses of HIV infection in the United States and dependent areas, 2018: diagnoses. Updated May 7, 2020. Accessed February 14, 2021. https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-31/content/diagnoses.html
3. Centers for Disease Control and Prevention. Estimated HIV incidence and prevalence in the United States, 2014-2018. May 2020. Accessed February 14, 2021. https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-supplemental-report-vol-25-1.pdf
4. HIV Treatment as Prevention and U=U. HIV Medicine Association. Accessed February 14, 2021. https://www.hivma.org/clinical-practice/hiv-treatment-as-preventions-uu/
5. Prevention Access Campaign. Consensus statement. Accessed February 22, 2021. https://www.preventionaccess.org/consensus
6. Moitra E, LaPlante A, Armstrong ML, Chan PA, Stein MD. Pilot randomized controlled trial of acceptance-based behavior therapy to promote HIV acceptance, HIV disclosure, and retention in medical care. AIDS Behav. 2017;21(9):2641-2649. doi: 10.4007/s10461-017-1780-z