HIV Care Retention and the Goal of an AIDS-Free Generation

Laura W. Cheever, MD, ScM; Rupali K. Doshi, MD, MS


February 07, 2013

The Importance of Retention in HIV Care

Identifying people infected with HIV and linking them to HIV primary care with initiation and long-term maintenance of life-saving antiretroviral treatment is an important public health measure that remains an elusive goal for many patients in the United States. The challenge of linking and retaining people living with HIV (PLHIV) in care and treatment can be demonstrated by data from the Centers for Disease Control and Prevention (CDC), which reveal that 18% of PLHIV remain undiagnosed, and only 80% of those diagnosed are linked to care within 3 months.[1] Once PLHIV are diagnosed and initially linked to HIV care, retention in care presents additional challenges, with the CDC estimating that only 56% of linked patients are retained.

Retention in care for patients with HIV is critical because patients actively engaged and retained in care are more likely to be prescribed antiretroviral medication,[2] achieve an undetectable viral load,[3] and ultimately improve mortality.[4] In addition, data increasingly demonstrate that antiretroviral therapy for PLHIV reduces the risk for HIV transmission.[5,6,7,8] Thus, retention in care is directly linked to better health outcomes and decreased likelihood of transmitting HIV to others. Regular clinic visits should also provide opportunities to receive counseling regarding HIV risk and other preventive health services such as vaccinations. Given the difficulty in identifying and linking patients to care in the United States, we cannot afford to lose them once engaged in care.

Are We Maximizing Use of Current Resources?

The Ryan White HIV/AIDS Program is a $2 billion annual federal investment, based on legislation originally from 1990 and reauthorized in 1996, 2000, 2006, and 2009.[9] It was designed to increase access to medical care and support services needed to link and retain uninsured and underinsured PLHIV in HIV care and treatment. The program provides services to more than half a million people every year by funding jurisdictions, medical providers, and support services providers across the United States, territories, and affiliated jurisdictions. The Health Resources and Services Administration's HIV/AIDS Bureau (HAB) administers the program and provides technical assistance to its grantees to achieve the goal of increased access to medical care and support services for PLHIV to retain them in HIV care and treatment.

Although the value of retention in care for those with chronic illness may seem self-evident, there is little in the HIV research literature providing evidence-based interventions to improve retention in care and treatment. In order to frame the policy issues and highlight areas of concern, since 2005, HAB has conceptualized and developed the continuum of care for PLHIV (Figure).[10]

Figure. Continuum for engagement in HIV care. From US Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau.[10]

The lack of proven interventions has spurred HAB to invest in the development of evidence-based practices in order to provide technical assistance to grantees to improve retention in care and treatment. Thus, HAB began a series of Special Projects of National Significance (SPNS) demonstration projects and the In+Care Campaign, a retention initiative through a cooperative agreement with the National Quality Center, to examine best practices and develop service models that promote retention in HIV primary care. The SPNS Outreach Initiative has demonstrated that clinical sites are well-positioned to f find clients who have previously been engaged in care and has demonstrated the utility of system navigators to assist with re-engagement back into care. In addition, through the national In+Care Campaign, Ryan White HIV/AIDS Program grantees are encouraged to measure retention, develop quality improvement projects, and share successes and challenges with others.

The development of a consistent set of measures to examine retention in care is a critical first step for many HIV programs that are working to improve performance. As part of the In+Care Campaign, a set of 4 national measures have been developed to measure retention and treatment success along the HIV care continuum, including linkage and early retention in care for newly diagnosed individuals, retention over 24 months, gaps in care longer than 6 months, and viral load suppression. Three of these measures were recently endorsed by the National Quality Forum for broad national use,[11] and 2 of these measures are part of the concise set of measures proposed by US Secretary of Health and Human Services Kathleen Sebelius in 2012 for use in federally funded HIV programs.[12]

However, as with most behaviorally based challenges, a multilevel approach will be needed to reach the national goals outlined in the National HIV/AIDS Strategy[13]:

By 2015, increase the proportion of Ryan White HIV/AIDS Program clients who are in continuous care (at least 2 visits for routine HIV medical care in 12 months at least 3 months apart) from 73% to 80% (or 237,924 people in continuous care to 260,739 people in continuous care).

It will take PLHIV, family and friends, clinics, community-based support organizations (including faith-based organizations), and local and state health departments working together with a common purpose to achieve the national goals.