Assessing concordance of HIV risk behaviors collected by different surveillance systems.

OBJECTIVES: Assess concordance of assigned transmission category between National HIV Surveillance System (NHSS) and Medical Monitoring Project (MMP); assess persistence of behaviors by comparing transmission category to current behavior. DESIGN: Retrospective analysis of HIV surveillance data. METHODS: For 4034 participants in the 2016 MMP cycle, transmission category was assigned in NHSS and MMP by applying a hierarchy to acquisition risk behaviors and selecting the most likely risk behavior that led to HIV acquisition. We assessed concordance of transmission category between systems, the number of persons with an updated transmission category in NHSS after incorporating MMP data, and concordance of transmission category and current behavior. RESULTS: Concordance of transmission category between NHSS and MMP was 87% for men with evidence of male-to-male sexual contact and ranged from 27% to 62% in persons with other transmission categories. Transmission category in NHSS was updated for 9% of persons after incorporating MMP data, mostly affecting those with no identified risk in NHSS. Current behavior aligned with updated NHSS transmission category in 56% of men with a transmission category of male-to-male sexual contact. However, only 8% of men and 5% of women with a transmission category of injection drug use had recently injected drugs. CONCLUSION: HIV surveillance systems can better inform prevention efforts with more complete risk information. Sexual behaviors are more persistent over time than injection drug use. In addition to promoting viral suppression, routinely assessing risk and tailoring prevention activities accordingly can improve health outcomes.

Intimate Partner Violence Experienced by Adults With Diagnosed HIV in the U.S.

INTRODUCTION: Intimate partner violence is associated with adverse health consequences among people with diagnosed HIV, which could have implications for disease progression and transmission. However, nationally representative estimates of intimate partner violence among people with diagnosed HIV are lacking. Investigators used nationally representative data to estimate the prevalence of physical violence by an intimate partner among adults with diagnosed HIV and examine the differences by selected characteristics. METHODS: This analysis included interview and medical record data from the 2015-2017 cycles of the Medical Monitoring Project, analyzed in 2019. Weighted percentages and 95% CIs were used to report the prevalence of intimate partner violence among people with diagnosed HIV (N=11,768). Bivariate and multivariate differences in intimate partner violence by sociodemographic, behavioral, and clinical characteristics were examined using Rao-Scott chi-square tests (p<0.05). RESULTS: Among people with diagnosed HIV, 26.3% reported having ever experienced intimate partner violence, and 4.4% reported having experienced intimate partner violence in the past 12 months. The prevalence of intimate partner violence differed by gender and gender/sexual identity. People who experienced intimate partner violence in the past 12 months were more likely to engage in behaviors associated with elevated HIV transmission risk and have unmet needs for supportive services. People who recently experienced intimate partner violence were less likely to be engaged in routine HIV care but were more likely to seek emergency care services and have poor HIV clinical outcomes. CONCLUSIONS: This study's findings support the need for screening people with diagnosed HIV for intimate partner violence and offering linkage to supportive services. Screening for intimate partner violence among people with diagnosed HIV, coupled with supportive services and counseling, may lead to improved safety and HIV clinical outcomes and decreased need for emergency and inpatient medical services.

Reported preexposure prophylaxis use among male sex partners of HIV-positive men: 2016-2018.

OBJECTIVE: To estimate the proportion of US HIV-positive men who report a male HIV-negative/unknown status (HIV-discordant) sexual partner taking preexposure prophylaxis (PrEP), and the use of multiple HIV prevention strategies within partnerships. DESIGN: The Medical Monitoring Project is a complex sample survey of US adults with diagnosed HIV. METHODS: We used data collected during June 2016 to May 2018 among sexually active HIV-positive men who had at least one HIV-discordant male partner (N = 1871) to estimate the weighted prevalence of reporting at least one partner taking PrEP. Among HIV-discordant partnerships (N = 4029), we estimated PrEP use, viral suppression among HIV-positive partners, and condomless anal sex. We evaluated significant (P < 0.05) differences between groups using prevalence ratios with predicted marginal means. RESULTS: Twenty-eight percent of sexually active HIV-positive MSM reported at least one HIV-discordant male partner taking PrEP. Twenty percent of HIV-discordant partners were reported to be taking PrEP; 73% were taking PrEP or the HIV-positive partner was virally suppressed. PrEP use was lower among black and Hispanic partners compared with white partners (12% and 19% vs. 27%). Fewer black than white MSM were in partnerships in which PrEP was used or the HIV-positive partner had sustained viral suppression (69% vs. 77%). Condomless anal intercourse was more prevalent in partnerships involving PrEP use and in partnerships involving either PrEP use or sustained viral suppression among the HIV-positive partner. CONCLUSION: PrEP use was reported among one in five partners, with disparities between black and white partners. Increasing PrEP use and decreasing racial/ethnic disparities could reduce disparities in HIV incidence and help end the US HIV epidemic.

Socioeconomic, Behavioral, and Clinical Characteristics of Persons Living with HIV Who Experience Homelessness in the United States, 2015-2016.

Homelessness is a substantial barrier to consistent, recommended HIV care, access and adherence to antiretroviral therapy (ART), and sustained viral suppression, thus increasing the risk for morbidity and transmission. We used data from the Medical Monitoring Project for June 1, 2015-May 31, 2017 to estimate the weighted prevalence of homelessness among persons with diagnosed HIV (PWH) (N = 7665) overall and by selected sociodemographic, behavioral, and clinical characteristics. Prevalence of homelessness was 8.5%. PWH experiencing homelessness were > 3 times as likely to have needed and not received shelter or housing services (32% vs. 10%), > 4 times as likely to inject drugs (9% vs. 2%), and > 7 times as likely to engage in exchange sex (10% vs. 1%), respectively, compared with PWH who did not experience homelessness. Homelessness was associated with lower HIV care retention, ART dose adherence, and sustained viral suppression. This analysis demonstrates substantial need for enhanced treatment, care, and service delivery for PWH experiencing homelessness. Research has demonstrated that housing assistance programs improve HIV-related outcomes and diminish HIV risk behaviors; therefore, housing assistance for PWH should be prioritized in public health policies and practice.

A National Behavioral and Clinical Surveillance System of Adults With Diagnosed HIV (The Medical Monitoring Project): Protocol for an Annual Cross-Sectional Interview and Medical Record Abstraction Survey.

BACKGROUND: The Medical Monitoring Project (MMP) is a national population-based behavioral and clinical surveillance system of adults with diagnosed HIV in the United States, and it is sponsored by the Centers for Disease Control and Prevention (CDC). Its purpose is to provide locally and nationally representative estimates of factors affecting HIV transmission risk and clinical outcomes. OBJECTIVE: This study aimed to describe the rationale for and methodology of the MMP, in addition to its contribution to evaluating and monitoring HIV prevention, care, and treatment efforts in the United States. METHODS: MMP employs a stratified 2-stage sample design to select annual samples of persons living with diagnosed HIV from the National HIV Surveillance System and conducts interviews and medical record abstractions with participating persons. RESULTS: MMP data are published routinely via annual reports, conference presentations, and scientific publications. Data may be accessed upon request from the CDC, contingent on the guidelines established for the security and confidentiality of HIV surveillance data. CONCLUSIONS: MMP is the only source of annual population-based data on the behaviors and clinical care of persons with diagnosed HIV in the United States. It provides essential information for monitoring progress toward national treatment and prevention goals and guiding efforts to improve the health of persons with diagnosed HIV and prevent HIV transmission. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/15453.

Discrimination in healthcare settings among adults with recent HIV diagnoses.

The prevalence of discrimination in healthcare settings among HIV patients in the United States is unknown. The Medical Monitoring Project (MMP) is a complex sample survey of adults receiving HIV medical care in the United States. We analyzed nationally representative MMP data collected 2011-2015. We assessed the prevalence of self-reported healthcare discrimination, perceived reasons for discrimination, and factors associated with discrimination among persons with HIV diagnoses ≤5 years before interview (n = 3,770). Overall, 14.1% of patients living with HIV (PLWH) experienced discrimination, of whom 82.2% attributed the discrimination to HIV. PLWH reporting poverty, homelessness, or attending a non-Ryan White HIV/AIDS Program (RWHAP) facility were more likely to report discrimination compared with other groups. Of patients attending non-RWHAP facilities, discrimination was higher among those in poverty (27.5%) vs. not in poverty (15.1%). Discrimination was associated with homelessness regardless of facility type, and was highest among homeless persons attending non-RWHAP facilities. Healthcare discrimination was commonly reported among PLWH, and was most often attributed to HIV status. Discrimination was higher among those reporting poverty or homelessness, particularly those attending non-RWHAP facilities. Incorporating practices, such as anti-discrimination training, in facilities may reduce healthcare discrimination.

Prevalence of Internalized HIV-Related Stigma Among HIV-Infected Adults in Care, United States, 2011-2013.

HIV-infected U.S. adults have reported internalized HIV-related stigma; however, the national prevalence of stigma is unknown. We sought to determine HIV-related stigma prevalence among adults in care, describe which socio-demographic groups bear the greatest stigma burden, and assess the association between stigma and sustained HIV viral suppression. The Medical Monitoring Project measures characteristics of U.S. HIV-infected adults receiving care using a national probability sample. We used weighted data collected from June 2011 to May 2014 and assessed self-reported internalized stigma based on agreement with six statements. Overall, 79.1% endorsed ≥1 HIV-related stigma statements (n = 13,841). The average stigma score was 2.4 (out of a possible high score of six). White males had the lowest stigma scores while Hispanic/Latina females and transgender persons who were multiracial or other race had the highest. Although stigma was associated with viral suppression, it was no longer associated after adjusting for age. Stigma was common among HIV-infected adults in care. Results suggest individual and community stigma interventions may be needed, particularly among those who are <50 years old or Hispanic/Latino. Stigma was not independently associated with viral suppression; however, this sample was limited to adults in care. Examining HIV-infected persons not in care may elucidate stigma's association with viral suppression.

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 Administration's HIV Infection Listings.

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.

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.

Behavioral and clinical characteristics of persons receiving medical care for HIV infection - Medical Monitoring Project, United States, 2009.

PROBLEM: As of December 31, 2009, an estimated 864,748 persons were living with human immunodeficiency virus (HIV) infection in the 50 U.S. states, the District of Columbia, and six U.S.-dependent areas. Whereas HIV surveillance programs in the United States collect information about persons with a diagnosis of HIV infection, supplemental surveillance systems collect in-depth information about the behavioral and clinical characteristics of persons receiving outpatient medical care for HIV infection. These data are needed to reduce HIV-related morbidity and mortality and HIV transmission. REPORTING PERIOD COVERED: Data were collected during June 2009-May 2010 for patients receiving medical care at least once during January-April 2009. DESCRIPTION OF THE SYSTEM: The Medical Monitoring Project (MMP) is an ongoing surveillance system that assesses behaviors and clinical characteristics of HIV-infected persons who have received outpatient medical care. For the 2009 data collection cycle, participants must have been aged ≥18 years and have received medical care during January-April 2009 at sampled facilities that provide HIV medical care within participating MMP project areas. Behavioral and selected clinical data were collected using an in-person interview, and most clinical data were collected using medical record abstraction. A total of 23 project areas in 16 states and Puerto Rico were funded to collect data during the 2009 data collection cycle. The data were weighted for probability of selection and nonresponse to be representative of adults receiving outpatient medical care for HIV infection in the United States and Puerto Rico. Prevalence estimates are presented as weighted percentages. The period of reference is the 12 months before the patient interview unless otherwise noted. RESULTS: The patients in MMP represent 421,186 adults who received outpatient medical care for HIV infection in the United States and Puerto Rico during January-April 2009. Of adults who received medical care for HIV infection, an estimated 71.2% were male, 27.2% were female, and 1.6% were transgender. An estimated 41.4% were black or African American, 34.6% were white, and 19.1% were Hispanic or Latino. The largest proportion (23.1%) were aged 45-49 years. Most patients (81.1%) had medical coverage; 40.3% had Medicaid, 30.6% had private health insurance, and 25.7% had Medicare. An estimated 69.6% of patients had three or more documented CD4+ T-lymphocyte cell (CD4+) or HIV viral load tests. Most patients (88.7%) were prescribed antiretroviral therapy (ART), and 71.6% had a documented viral load that was undetectable or ≤200 copies/mL at their most recent test. Among sexually active patients, 55.0% had documentation in the medical record of being tested for syphilis, 23.2% for gonorrhea, and 23.9% for chlamydia. Noninjection drugs were used for nonmedical purposes by an estimated 27.1% of patients, whereas injection drugs were used for nonmedical purposes by 2.1% of patients. Overall, 12.9% of patients engaged in unprotected sex with a partner of negative or unknown HIV status. Unmet supportive service needs were prevalent, with an estimated 22.8% in need of dental care and 12.0% in need of public benefits, including Social Security Income or Social Security Disability Insurance. Fewer than half of patients (44.8%) reported receiving HIV and sexually transmitted disease prevention counseling from a health-care provider. INTERPRETATION: The findings in this report indicate that most adults living with HIV who received medical care in 2009 were taking ART, had CD4+ and HIV viral load testing at regular intervals, and had health insurance or other coverage. However, some patients did not receive clinical services and treatment in accordance with guidelines. Some patients engaged in behaviors, such as unprotected sex, that increase the risk for transmitting HIV to sex partners, and some used noninjection or injection drugs or both. PUBLIC HEALTH ACTIONS: Local and state health departments and federal agencies can use MMP data for program planning to determine allocation of services and resources, guide prevention planning, assess unmet medical and supportive service needs, inform health-care providers, and help focus intervention programs and health policies at the local, state, and national levels.

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.

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.

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.

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 one's 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.

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.

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.