Jennifer L. Fagan

Human immunodeficiency virus transmission at each step of the care continuum in the United States.

IMPORTANCE Human immunodeficiency virus (HIV) transmission risk is primarily dependent on behavior (sexual and injection drug use) and HIV viral load. National goals emphasize maximizing coverage along the HIV care continuum, but the effect on HIV prevention is unknown. OBJECTIVES To estimate the rate and number of HIV transmissions attributable to persons at each of the following 5 HIV care continuum steps: HIV infected but undiagnosed, HIV diagnosed but not retained in medical care, retained in care but not prescribed antiretroviral therapy, prescribed antiretroviral therapy but not virally suppressed, and virally suppressed. DESIGN, SETTING, AND PARTICIPANTS A multistep, static, deterministic model that combined population denominator data from the National HIV Surveillance System with detailed clinical and behavioral data from the National HIV Behavioral Surveillance System and the Medical Monitoring Project to estimate the rate and number of transmissions along the care continuum. This analysis was conducted January 2013 to June 2014. The findings reflect the HIV-infected population in the United States in 2009. MAIN OUTCOMES AND MEASURES Estimated rate and number of HIV transmissions. RESULTS Of the estimated 1,148,200 persons living with HIV in 2009, there were 207,600 (18.1%) who were undiagnosed, 519,414 (45.2%) were aware of their infection but not retained in care, 47,453 (4.1%) were retained in care but not prescribed ART, 82,809 (7.2%) were prescribed ART but not virally suppressed, and 290,924 (25.3%) were virally suppressed. Persons who are HIV infected but undiagnosed (18.1% of the total HIV-infected population) and persons who are HIV diagnosed but not retained in medical care (45.2% of the population) were responsible for 91.5% (30.2% and 61.3%, respectively) of the estimated 45,000 HIV transmissions in 2009. Compared with persons who are HIV infected but undiagnosed (6.6 transmissions per 100 person-years), persons who were HIV diagnosed and not retained in medical care were 19.0% (5.3 transmissions per 100 person-years) less likely to transmit HIV, and persons who were virally suppressed were 94.0% (0.4 transmissions per 100 person-years) less likely to transmit HIV. Men, those who acquired HIV via male-to-male sexual contact, and persons 35 to 44 years old were responsible for the most HIV transmissions by sex, HIV acquisition risk category, and age group, respectively. CONCLUSIONS AND RELEVANCE Sequential steps along the HIV care continuum were associated with reduced HIV transmission rates. Improvements in HIV diagnosis and retention in care, as well as reductions in sexual and drug use risk behavior, primarily for persons undiagnosed and not receiving antiretroviral therapy, would have a substantial effect on HIV transmission in the United States.

Excess Burden of Depression among HIV-Infected Persons Receiving Medical Care in the United States: Data from the Medical Monitoring Project and the Behavioral Risk Factor Surveillance System

Background With increased life expectancy for HIV-infected persons, there is concern regarding comorbid depression because of its common occurrence and association with behaviors that may facilitate HIV transmission. Our objectives were to estimate the prevalence of current depression among HIV-infected persons receiving care and assess the burden of major depression, relative to that in the general population. Methods and Findings We used data from the Medical Monitoring Project (MMP) and the Behavioral Risk Factors Surveillance System (BRFSS). The eight-item Patient Health Questionnaire was used to identify depression. To assess the burden of major depression among HIV-infected persons receiving care, we compared the prevalence of current major depression between the MMP and BRFSS populations using stratified analyses that simultaneously controlled for gender and, in turn, each of the potentially confounding demographic factors of age, race/ethnicity, education, and income. Each unadjusted comparison was summarized as a prevalence ratio (PR), and each of the adjusted comparisons was summarized as a standardized prevalence ratio (SPR). Among HIV-infected persons receiving care, the prevalence of a current episode of major depression and other depression, respectively, was 12.4% (95% CI: 11.2, 13.7) and 13.2% (95% CI: 12.0%, 14.4%). Overall, the PR comparing the prevalence of current major depression between HIV-infected persons receiving care and the general population was 3.1. When controlling for gender and each of the factors age, race/ethnicity, and education, the SPR (3.3, 3.0, and 2.9, respectively) was similar to the PR. However, when controlling for gender and annual household income, the SPR decreased to 1.5. Conclusions Depression remains a common comorbidity among HIV-infected persons. The overall excess burden among HIV-infected persons receiving care is about three-times that among the general population and is associated with differences in annual household income between the two populations. Relevant efforts are needed to reduce this burden.

Health-Related Beliefs and Decisions about Accessing HIV Medical Care among HIV-Infected Persons Who Are Not Receiving Care

In the United States, the publically supported national HIV medical care system is designed to provide HIV medical care to those who would otherwise not receive such care. Nevertheless, many HIV-infected persons are not receiving medical care. Limited information is available from HIV-infected persons not currently in care about the reasons they are not receiving care. From November 2006 to February 2007, we conducted five focus groups at community-based organizations and health departments in five U.S. cities to elicit qualitative information about barriers to entering HIV care. The 37 participants were mostly male (n = 29), over the age of 30 (n = 34), and all but one had not received HIV medical care in the previous 6 months. The focus group discussions revealed health belief-related barriers that have often been overlooked by studies of access to care. Three key themes emerged: avoidance and disbelief of HIV serostatus, conceptions of illness and appropriate health care, and negative experiences with, and distrust of, health care. Our findings point to the potentially important influence of these health-related beliefs on individual decisions about whether to access HIV medical care. We also discuss the implications of these beliefs for provider-patient communication, and suggest that providers frame their communications with patients such that they are attentive to the issues identified by our respondents, to better engage patients as partners in the treatment process.

Sexual risk behaviour and viral suppression among HIV-infected adults receiving medical care in the United States

Objective:To describe the prevalence and association of sexual risk behaviours and viral suppression among HIV-infected adults in the United States. Design:Cross-sectional analysis of weighted data from a probability sample of HIV-infected adults receiving outpatient medical care. The facility and patient response rates were 76 and 51%, respectively. Methods:We analysed 2009 interview and medical record data. Sexual behaviours were self-reported in the past 12 months. Viral suppression was defined as all viral load measurements in the medical record during the past 12 months less than 200 copies/ml. Results:An estimated 98 022 (24%) HIV-infected adults engaged in unprotected vaginal or anal sex; 50 953 (12%) engaged in unprotected vaginal or anal sex with at least one partner of negative or unknown HIV status; 23 933 (6%) did so while not virally suppressed. Persons who were virally suppressed were less likely than persons who were not suppressed to engage in vaginal or anal sex [prevalence ratio, 0.88; 95% confidence interval (CI), 0.82–0.93]; unprotected vaginal or anal sex (prevalence ratio, 0.85; 95% CI, 0.73–0.98); and unprotected vaginal or anal sex with a partner of negative or unknown HIV status (prevalence ratio, 0.79; 95% CI, 0.64–0.99). Conclusion:The majority of HIV-infected adults receiving medical care in the U.S. did not engage in sexual risk behaviours that have the potential to transmit HIV, and of the 12% who did, approximately half were not virally suppressed. Persons who were virally suppressed were less likely than persons who were not suppressed to engage in sexual risk behaviours.

Using HIV Surveillance Data to Monitor Missed Opportunities for Linkage and Engagement in HIV Medical Care

Monitoring delayed entry to HIV medical care is needed because it signifies that opportunities to prevent HIV transmission and mitigate disease progression have been missed. A central question for population-level monitoring is whether to consider a person linked to care after receipt of one CD4 or VL test. Using HIV surveillance data, we explored two definitions for estimating the number of HIV-diagnosed persons not linked to HIV medical care. We used receipt of at least one CD4 or VL test (definition 1) and two or more CD4 or VL tests (definition 2) to define linkage to care within 12 months and within 42 months of HIV diagnosis. In five jurisdictions, persons diagnosed from 12/2006-12/2008 who had not died or moved away and who had zero, or less than two reported CD4 or VL tests by 7/31/2010 were considered not linked to care under definitions 1 and 2, respectively. Among 13,600 persons followed up for 19-42 months; 1,732 (13%) had no reported CD4 or VL tests; 2,332 persons (17%) had only one CD4 or VL test and 9,536 persons (70%) had two or more CD4 or VL tests. To summarize, after more than 19 months, 30% of persons diagnosed with HIV had less than two CD4 or VL tests; more than half of them were considered to have entered care if entering care is defined as having one CD4 or VL test. Defining linkage to care as a single CD4 or VL may overestimate entry into care, particularly for certain subgroups.

Medication-Related Barriers to Entering HIV Care

Early entry to HIV care and receipt of antiretroviral therapy improve the health of the individual and decrease the risk of transmission in the community. To increase the limited information on prospective decisions to enter care and how these decisions relate to beliefs about HIV medications, we analyzed interview data from the Never in Care Project, a multisite project conducted in Indiana, New Jersey, New York City, Philadelphia, and Washington State. From March 2008 through August 2010, we completed structured interviews with 134 persons with no evidence of HIV care entry, 48 of whom also completed qualitative interviews. Many respondents believed that HIV care entails the passive receipt of medications that may be harmful or unnecessary, resulting in reluctance to enter care. Respondents voiced concerns about prescription practices and preserving future treatment options, mistrust of medications and medical care providers, and ambivalence about the life-preserving properties of medications in light of an assumed negative impact on quality of life. Our results support the provision of information on other benefits of care (beyond medications), elicitation of concerns about medications, and assessment of psychosocial barriers to entering care. These tasks should begin at the time a positive test result is delivered and continue throughout the linkage-to-care process; for persons unwilling to enter care immediately, support should be provided in nonmedical settings.

Understanding People Who Have Never Received HIV Medical Care: A Population-Based Approach

A substantial number of people living with human immunodeficiency virus (HIV) have never received HIV medical care despite the benefits of early entry to care. The United States has no population-based system that can be used to estimate the number of people who have never received HIV care or to monitor the reasons that care is delayed. Although local efforts to describe unmet need and barriers to care have been informative, nationally representative data are needed to increase the number of people who enter care soon after diagnosis. Legal requirements to report all CD4 counts and all HIV viral load levels (indicators of HIV care) in most states now make national estimates of both care entry and non-entry feasible. The Centers for Disease Control and Prevention (CDC) and five state and local health department jurisdictions are testing and evaluating methods for a standardized supplemental HIV surveillance system to characterize HIV-infected people across the U.S. who have not entered HIV care after their diagnosis. This article reviews the context, rationale, and potential contributions of a nationally representative surveillance system to monitor delays in receiving HIV care, and provides data from the formative phase of the CDC pilot project.

The influence of perceptions of HIV infection, care, and identity on care entry

The benefits of accessing HIV care after diagnosis (e.g., improved clinical outcomes and reduced transmission) are well established. However, many persons who are aware that they are HIV infected have never received HIV medical care. During 2008–2010, we conducted 43 in-depth interviews in three health department jurisdictions among adults who had received an HIV diagnosis but who had never accessed HIV medical care. Respondents were selected from the HIV/AIDS Reporting System, a population-based surveillance system. We explored how respondents perceived HIV infection and HIV medical care. Most respondents associated HIV with death. Many respondents said that HIV medical care was not necessary until one is sick. Further, we explored how these perceptions may have conflicted with ones identity and thus served as barriers to timely care entry. Most respondents perceived themselves as healthy. All respondents acknowledged their HIV serostatus, but many did not self-identify as HIV-positive. Several respondents expressed that they were not ready to receive HIV care immediately but felt that they would eventually attempt to access care. Some stated that they needed time to accept their HIV diagnosis before entering care. To improve timely linkage to care, we suggest that during the posttest counseling session and subsequent linkage-to-care activities, counselors and service providers discuss patient perceptions of HIV, particularly to address beliefs that HIV infection is a “death sentence” or that HIV care is necessary only for those who exhibit symptoms.

Missed Connections: HIV-Infected People Never in Care

Objective. Clinical interventions that lengthen life after HIV infection and significantly reduce transmission could have greater impact if more HIV-diagnosed people received HIV care. We tested a surveillance-based approach to investigating reasons for delayed entry to care. Methods. Health department staff in three states and two cities contacted eligible adults diagnosed with HIV four to 24 months previously who had no reported CD4+ lymphocyte (CD4) or viral load (VL) tests. The staff conducted interviews, performed CD4 and VL testing, and provided referrals to HIV medical care. Reported CD4 and VL tests were prospectively monitored to determine if respondents had entered care after the interview. Results. Surveillance-based follow-up uncovered problems with reporting CD4 and VL tests, resulting in surveillance improvements. However, reporting problems led to misspent effort locating people who were already in care Follow-up proved difficult because contact information in surveillance case records was often outdated or incorrect. Of those reached, 37% were in care and 29% refused participation. Information from 132 people interviewed generated ideas for service improvements, such as emphasizing the benefits of early initiation of HIV care, providing coverage eligibility information soon after diagnosis, and leveraging other medical appointments to provide assistance with linkage to HIV care. Conclusions. Surveillance-based follow-up of HIV-diagnosed individuals not linked to care provided information to improve both surveillance and linkage services, but was inefficient because of difficulties identifying, locating, and recruiting eligible people. Inefficiencies attributable to missing, incomplete, or inaccurate surveillance records are likely to diminish as data quality is improved through ongoing use.

Nearly Half Of US Adults Living With HIV Received Federal Disability Benefits In 2009

The effects of HIV infection on national labor-force participation have not been rigorously evaluated. Using data from the Medical Monitoring Project and the National Health Interview Survey, we present nationally representative estimates of the receipt of disability benefits by adults living with HIV receiving care compared with the general US adult population. We found that in 2009, adults living with HIV were nine times more likely than adults in the general population to receive disability benefits. The risk of being on disability is also greater for younger and more educated adults living with HIV compared to the general population, which suggests that productivity losses can result from HIV infection. To prevent disability, early diagnosis and treatment of HIV are essential. This study offers a baseline against which to measure the impacts of recently proposed or enacted changes to Medicaid and private insurance markets, including the Affordable Care Act and proposed revisions to the Social Security Administrations HIV Infection Listings.