1. The Issue: PLWH Not In Care

Executive Summary  TOP

HIV care radically shifted in 1996 with the advent of antiretroviral therapy (ART), setting in motion a subsequent decade of outreach work to link infected individuals into potentially life-saving care. Progress is evident. Greater numbers of PLWH are in care and on ART. But many are not. Of the estimated 1,039,000 to 1,185,000 PLWH in the U.S. , a significant proportion are untested, untreated, or both. An estimated one-third who know their HIV status may not be receiving care.

Efforts to get more PLWH in care include a redoubled focus on outreach by the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, in pursuit of its mission to fill gaps in care for underserved PLWH. One such effort is the CARE Act's SPNS, or Special Projects of National Significance, which funded programs in 2001 to investigate ways to better identify and link people into HIV care. Results are mixed. SPNS outreach programs are finding fairly small numbers of new HIV-positive cases and individuals never before in care. They are more successful at finding those who previously fell out of care.

Given these findings, what are the most effective ways to identify and link PLWH into care? This question was the impetus for a 2005 consultation meeting, convened by the Health Resources and Services Administration's ( HRSA ) HIV/AIDS Bureau (HAB) in its role overseeing the CARE Act. In summary, local, State, and Federal representatives shared these observations:

• Complexity of Defining Out-of-Care . Estimating the number of PLWH not in care is complex given data challenges (e.g., gaps in HIV prevalence data).
• In Care is a Fluid Concept . Defining who is not in care is further complicated by the concept of “in care”—a remarkably fluid concept (see the care continuum chart, below). People may be in care but intermittently due to substance abuse or survival challenges like housing. The standard of care is complex and variable as not all patients need certain HIV-related services like antiretrovirals if their disease state does not call for it. Getting regular primary care visits to monitor HIV disease status may be sufficient in their case.
• Numerous Barriers to Care Exist . People are not in care for many reasons. Poverty, health insurance gaps, and substance abuse or mental health problems—conditions increasingly common among PLWH—can forestall entry and retention in care. Fear and stigma, low health literacy, and lack of readiness are others. Data are limited, however, to define the specific mix that keeps people out of care altogether.
• Many Outreach Best Practices Exist . Promising outreach practices have been identified by SPNS and others, like specialized case management, helping clients navigate care systems, and health promotion.
• Some Programs Should Focus on Re-Engagement . With limited resources for outreach, many programs will be more effective focusing on re-engaging people who fall out of care. Some programs will have names and demographic information to help them find and re-engage these clients.

Given these difficulties, should CARE Act efforts focus on sporadic users of care to improve retention? The answer is unclear. Regardless, many outreach best practices exist. They are presented in this report for your consideration.

Investigating Engagement: HRSA/HAB Consultation  TOP

To better understand the challenges of engaging and retaining PLWH in care—and ways to enhance this work—HRSA’s HIV/AIDS Bureau (HAB) convened an April 27-28, 2005 consultation meeting of expert voices from across the nation.  Participants reviewed epidemiologic data on the out-of-care and identified common difficulties and successes of engaging people in HIV care.  Participants also discussed different outreach models and generated ideas and recommendations for ways to refocus the nation’s HIV engagement in care work.  Community, national, and Federal agencies joined staff from HRSA/HAB in the two-day meeting.  Also taking part were Federal partners from CDC, the Substance Abuse and Mental Health Services Administration (SAMHSA), and the National Institutes of Health (NIH).