In this article, we present the results of a series of focus groups with people with disabilities, in which we took a cross-disability, lifespan perspective of disability. Consumers were asked about a broad set of barriers, such as problems with communication, transportation, and insurance, as well as about barriers related to physical accessibility. We used the Institute of Medicine's framework to categorize barriers as either structural, financial, or personal/cultural. Our results suggest that individuals with disabilities experience multiple barriers to obtaining health care and that these barriers are more pronounced for some types of health care than others. In addition, regardless of disability type, consumers consistently spoke about similar barriers. The results underscore the importance of taking a broad perspective when making policy decisions and the need for continued change and improvement in this area.

The purpose of this study was to contribute to the limited literature on newly diagnosed persons living with HIV/AIDS (PLWHA) by describing their retention in HIV primary care and changes in barriers to care over 12 months of follow-up subsequent to enrolling in outreach interventions. Medical chart review and interview data were collected from 104 newly diagnosed PLWHA at baseline, 6-month, and 12-month follow-up. Almost all newly diagnosed PLWHA (92%) had an HIV care appointment in the 6 months post-enrollment. Newly diagnosed persons were more likely to have undetectable viral loads at 6 and 12-month follow-up compared to baseline with 45% undetectable by 12 months. Adequate retention in care (at least one appointment in each 6-month window) was significantly associated with reductions in substance use and improvements in insurance coverage. Improvements in mental health status and the elimination of stigma as a barrier were not associated with retention, but those who reported stigma as a barrier at baseline and continued to report stigma at 6 months had less than adequate retention. These results suggest the need for early and intensive outreach interventions for newly diagnosed persons. Future directions include testing outreach interventions in a randomized clinical trial, and evaluating programs that integrate early HIV identification and intensive outreach to enroll and retain persons newly infected with HIV in care.

This cross-sectional study examined factors associated with the receipt of HIV medical care among people who know their HIV status and are not newly diagnosed with HIV. Interviews were conducted with 1133 HIV-positive individuals between October 2003 and July 2005 who enrolled in 1 of 10 outreach programs across the country. The sample was predominantly non-white (86%), male (59%), and unstably housed (61%), with a past history of cocaine use (68%). Twelve percent had received no HIV medical care in the 6 months prior to the interview. Those with no care were similar to those who received some HIV care in sociodemographic characteristics, but in multivariate analysis were less likely to have a case manager (p < 0.001) or use mental health services (p < .001), had lower mental health status scores (p < 0.05), were more likely to be active drug users (p < 0.01), had greater unmet support service needs (p < 0.05) and reported that health beliefs were a barrier to care (p < 0.001). Interventions to engage people in HIV medical care need to address barriers to care through linkages with mental health, substance abuse treatment and support services, and address the health beliefs that deter people from seeking care.

This paper examines factors associated with engaging socially marginalized HIV-positive persons in primary care using interview and chart review data from 984 clients presenting for services at 10 agencies participating in a multisite demonstration project. The sample was predominantly minority, and many reported drug and mental health problems as well as housing instability. At baseline, roughly half of the participants were engaged in HIV primary care; the other participants were either not at all engaged in HIV primary care or somewhat engaged in care. Those who were somewhat engaged in care were very similar to those who were not at all engaged in care, and significantly different than those who were fully engaged in care across a number of demographic, health status/utilization, and barriers to care items and fared equally poorly with regard to engagement in care at 12-month follow-up. In 12-month longitudinal analyses, 58% of those not engaged at baseline ( n = 517) became more fully engaged in care. In the final multivariate model that controlled for disease stage, decreases in drug use, structural barriers, and unmet needs were associated with engagement in care. Interventions that focus on decreasing structural barriers and unmet support services needs, addressing negative health beliefs and attending to drug use are promising public health strategies to engage marginalized HIV-positive persons in HIV primary care.

Treatment with highly active antiretroviral therapy (HAART) decreases morbidity and mortality for persons with human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) and reduces costs of care. Yet many patients for whom HAART is indicated do not receive it. This study investigated the reasons why certain patients of a community health center with HIV/AIDS did not receive HAART between 1997 and 1998. Medical record reviews were performed to determine which patients for whom HAART was indicated (according to United States Public Health Service guidelines) were not prescribed HAART. Chart reviews and patient interviews were conducted to determine why they did not receive HAART. Of the 88 patients eligible for HAART, 60 (69%) had it prescribed in 1997-1998. Of the remaining 28 patients, 3 did not receive HAART because their provider never discussed it with them. For 6 patients (21%), the provider discussed HAART but did not recommend it; 16 patients (57%) declined HAART although their provider recommended it, and 3 (11%) accepted their provider's recommendation but never started HAART. Patients' most common reasons for refusing HAART were not being ready for strict adherence to a complex regimen (7/16) and fear of side effects (6/16). Other reasons included active drug use, religious beliefs, homelessness, confidentiality concerns, depression, and feeling well without HAART. Providers did not recommend HAART because of active drug use (4/6), lack of engagement with care (2/6) as well as homelessness, depression, and the perception that the patient was doing well without HAART. Providers should be trained to offer all patients the opportunity to develop a plan to address barriers to adherence and the support needed to implement it. Resources should also target the treatment of substance abuse and mental illness to improve the usage of HAART.

Despite the availability and proven efficacy of medical treatment, many individuals living with HIV in the United States today are not engaged in regular HIV medical care or receiving antiretroviral medications. This journal supplement highlights results of a national 5-year multisite Outreach Initiative, funded by the Health Resources and Services Administration (HRSA) in 2001 to "engage people in HIV care, turn sporadic users of care into regular users, and promote retention in care." The introductory paper for the supplement provides background information on the characteristics of individuals who are not engaged in regular HIV care, the barriers they face, intervention options, and the public policy implications of this issue. Interventions to engage and retain underserved populations living with HIV in medical care are essential to ensure access to medical care and to reduce disparities in health outcomes.

Engagement in HIV primary care and the receipt of antiretroviral therapy when clinically indicated offers patients the opportunity to experience HIV disease as a chronic illness. Yet many people, particularly those with comorbid mental health or substance abuse conditions and those who face multiple barriers to care, cycle in and out of care and thus can not reap the life-prolonging benefits of antiretroviral therapy. Although there is evidence about the impact of different interventions on adherence to HIV medications, there is little information about the impact of interventions on engagement or retention in HIV primary care among the hard-to-reach. In this multisite, national study, we contribute new information by exploring the relationship between outreach program contacts and retention in care over a 12-month period among participants in a demonstration project to promote engagement and retention in HIV primary care. We found that when participants received nine or more contacts during the first 3 months of their programs, they were about half as likely to have a substantial gap (defined as 4 months or more) in primary care during the first 12 months of follow-up. This finding remained after controlling for baseline CD4 count. These findings can be used to improve the effectiveness of programs to increase engagement and retention in HIV primary care among the hard-to-reach.

Objectives. We provide an overview of the Health Resources and Services