Viral suppression among HIV-positive persons is a critical component of HIV treatment and prevention programs because it leads to improved individual health outcomes and reduced transmission.1,2 To achieve these outcomes and ultimately achieve viral suppression, persons with HIV must engage in a continuum of services, including HIV diagnosis, linkage to care and ongoing HIV care, and appropriately timed and consistent antiretroviral therapy (ART).
Attaining a high level of engagement at each step of the continuum of care is essential in a comprehensive strategy to address HIV in the United States. A 2011 review concluded that better testing strategies and more adequate engagement in each step of the continuum improve the care of persons living with HIV (PLWH) and decrease incident infections.3 Data from this review indicated that ∼75% of individuals newly diagnosed with HIV successfully linked to HIV care within 6–12 months after diagnosis, 80%–90% linked within 3–5 years, and ∼50% of PLWH were not engaged in regular HIV care. More recently, analyses based on HIV surveillance data from 14 jurisdictions indicated that optimal levels of engagement have still not been achieved. According to these data, 80% of persons diagnosed with HIV had at least 1 HIV care visit within 3 months after diagnosis. However, only 43% of all diagnosed persons received regular HIV care and 36% achieved viral suppression.4 The low level of viral suppression reinforces the well-documented view that individuals who do not receive regular medical care, also do not receive consistent ART and do not achieve optimal outcomes.
The U.S. Department of Health and Human Services and the Institute of Medicine have developed national indicators for monitoring HIV clinical care and services for PLWH5,6 The National HIV/AIDS Strategy (NHAS) has also set specific targets to achieve by 2015.7 Some of the objectives outlined in NHAS include increasing (1) linkage to clinical care among newly diagnosed patients from 65% to 85%, (2) receipt of continuous care among PLWH from 73% to 80%, and (3) viral suppression among HIV-diagnosed gay and bisexual men, blacks, and Hispanics by 20%. In response to NHAS, the Division of HIV/AIDS Prevention (DHAP) within the Centers for Disease Control and Prevention (CDC) developed a strategic plan that outlines 15 objectives for strengthening DHAP programming and operations.8
HIV surveillance data can be used to measure the linkage to care, retention in care, and viral suppression goals outlined by NHAS, Institute of Medicine, and the DHAP Strategic Plan. Our objective was to examine differences at the state level for each step in the continuum of care using updated surveillance data, which now has data available from 19 jurisdictions.
Data from the National HIV Surveillance System (NHSS) reported to CDC through December 2012 were used to determine the number of persons diagnosed with HIV and the percentages of persons linked to care, in care, retained in continuous care, and virally suppressed. As of December 2012, 19 jurisdictions had met the following criteria for the collection and reporting of CD4+ T-lymphocyte (CD4) and viral load (VL) test results: (1) the jurisdiction's laws or regulations required the reporting of all CD4 and VL results to the state or local health department; (2) ≥95% of all laboratory test results were reported by laboratories that conduct HIV-related testing for each jurisdiction; and (3) the jurisdiction had reported to CDC all CD4 and VL results received since at least January 2010. The 19 areas include 18 states [Delaware, California (Los Angeles County and San Francisco only), Georgia, Hawaii, Illinois, Indiana, Iowa, Louisiana, Michigan, Minnesota, Missouri, Nebraska, New Hampshire, New York, North Dakota, South Carolina, West Virginia, and Wyoming] and the District of Columbia.
Linkage to care was based on data for persons newly diagnosed with HIV during 2011 and was defined as having ≥1 CD4 (count or percentage) or VL test performed within 3 months after HIV diagnosis, including those performed during the same month as diagnosis. A minimum of 9 months was allowed for delays in reporting of case reports and laboratory data to NHSS.
Receiving any HIV medical care (“in care”), retention in continuous care, and viral suppression were based on data for all persons diagnosed with HIV by December 31, 2009, who resided in any of the 19 jurisdictions at the time of diagnosis and were alive at year-end 2010 (ie, persons living with diagnosed HIV; PLWH). A minimum of 18 months delay was allowed for the reporting of deaths to NHSS. In care was defined as having ≥1 CD4 and/or VL result during 2010. Retention in continuous care was defined as having ≥2 CD4 or VL results at least 3 months apart during 2010.
Viral suppression was defined as having a VL result ≤200 copies per milliliter at the most recent VL test during 2010. The cutoff value of ≤200 copies per milliliter was based on the U.S. Department of Health and Human Services–recommended definition of virological failure.9 If multiple VL tests occurred in the same month that could qualify as “most recent,” the highest VL was selected. If the numerical result was missing or the result was a logarithmic value, the result interpretation (eg, below limit) was used to determine viral suppression.
Linkage to Care
In the 19 jurisdictions, 15,449 persons were diagnosed with HIV during 2011 (Table 1), representing 37% of persons diagnosed in the United States. Of these, 79.8% were linked to HIV medical care within 3 months after diagnosis. By jurisdiction, the percentage linked to care ranged from 71.6% in Georgia to 100% in North Dakota.
In Care/Retention in Continuous Care
A total of 338,959 persons were living with diagnosed HIV at year-end 2010 in the 19 jurisdictions (Table 1). Of these, 214,734 (63.4%) were in care during 2010. By jurisdiction, the percentages ranged from 41.2% in Illinois to 74.5% in Iowa (Fig. 1). Meanwhile, 172,371 (50.9%) of PLWH were retained in continuous care during 2010. The percentages, by jurisdiction, ranged from 24.6% in Illinois to 58.8% in Iowa. Overall, there was a 12.5% difference between the percentages of persons in care (63.4%) and those retained in care (50.9%). The largest difference by jurisdiction was in West Virginia (54.0%–33.3%), followed by North Dakota (61.5%–42.0%), and Michigan (69.4%–51.2%).
Of the 338,959 PLWH at year-end 2010, a total of 147,015 (43.4%) persons' had suppressed VL during 2010 (Table 1). By jurisdiction, the percentages ranged from 14.3% in Delaware to 55.7% in California. Of persons with a VL test, 72.7% had suppressed VL with a range from 50.2% in Delaware to 87.9% in North Dakota. Overall, there was a 7.5% difference between the percentages of persons retained in care (50.9%) and those with suppressed VLs (43.4%). The largest difference by jurisdiction was in Delaware (28.0%–14.3%), followed by Georgia (43.6%–31.5%), and New York (58.3%–47.1%).
Our findings indicate that 80% of newly diagnosed persons were linked to care within 3 months after HIV diagnosis. Although this estimate is lower than the NHAS target for linkage to care, 7 jurisdictions have met or surpassed the 2015 goal of 85%, and several others are within 5% of the goal. Across most jurisdictions, the percentage linked to care was generally higher than what has been reported in other studies.3,10,11
A large percentage of PLWH in the 19 jurisdictions were not receiving ongoing care. Only 63.4% had 1 care visit in 2010, and 50.9% were retained in care in 2010. Care utilization varied substantially across the 19 jurisdictions, but across many jurisdictions, the percentages retained in continuous care were lower than findings from other studies.3,4,10,11 All areas fell well below the NHAS goal of 80% of persons receiving continuous care necessitating substantial improvement to meet the 2015 goal. Across all jurisdictions, the percentage of persons who had suppressed VL was higher (43.4%) than an earlier estimate (36.2%).4
In all jurisdictions except New York, there were large differences between the percentages of persons who were in care and those retained in continuous care, and somewhat smaller differences between the percentages retained in care and virally suppressed. In 3 jurisdictions (Minnesota, North Dakota, and West Virginia), the percentage of persons with suppressed VL was higher than that for persons retained in care indicating that persons may be in care but do not meet the retention in care definition of having ≥2 CD4 or VL tests at least 3 months apart in a given year. To monitor disease status and the response to treatment, CD4 and VL testing is recommended every 3–4 months, after the initial care visit. However, among those who are clinically stable, CD4 may be monitored less frequently.9,12
Several factors may impact success at each step of the continuum. For example, social and economic barriers can affect access to and retention in care, including lack of health insurance,13,14 poverty, unemployment, homelessness, food insecurity, lack of transportation, lack of social support, mental health, substance abuse, and lower education.15–18 Our analysis is one of the first explorations of state-level data to identify gaps in the continuum of care; additional analyses are needed at the state-level that further investigate the continuum by demographic and behavioral characteristics, as well as social determinants of health. Such future analyses will help identify disparities in care and treatment and may assist in targeting prevention and care efforts.
Our analyses are subject to several limitations. Our estimations of linkage to care, retention in care, and viral suppression were based on data from 19 jurisdictions and therefore may not be representative of the United States. Second, we calculated the percentage linked to care based on the population of persons diagnosed during the most recent year (2011). We did not have data available to determine whether all prevalent cases had been linked to care within 3 months after diagnosis. Therefore, linkage to care estimates could not be presented as part of the continuum of care in Figure 1. Also, this analysis included PLWH in the jurisdictions based on residence at diagnosis. Laboratory reports may have been missed if PLWH moved to an area outside the 19 jurisdictions.19 Finally, treatment data are not available in NHSS, so we were not able to assess the relationship between ART and viral suppression; instead, we measured viral suppression among PLWH.
HIV surveillance programs within state and local health departments are essential for monitoring and interpreting levels of engagement across the continuum of care at the population level. The ability to measure these outcomes using surveillance data is dependent on the quality and availability of laboratory data; several additional factors also influence which jurisdictions can be evaluated. First, state regulations need to support the reporting of all CD4 and VL result values. Next, jurisdictions must have practices in place to: (1) ensure data reported by providers and laboratories are complete, timely, and follow state reporting regulations, (2) evaluate the quality of laboratory data, and (3) enter all laboratory results into the surveillance software at the local level. Improvements in laboratory reporting will allow the essential steps in the continuum to be examined across additional states and by region.
In summary, the national HIV care indicators allow care providers and public health personnel to focus efforts around key priorities and monitor and report on progress. Although 80% of persons were linked to care within 3 months of diagnosis, a large percentage of PLWH in the 19 jurisdictions were not receiving ongoing care in 2010, and this lack of regular care may have been associated with a lack of viral suppression. These data highlight the importance of analyzing data by jurisdiction to tailor interventions that are appropriate at the local level. Health care providers, state and local health departments, and government agencies can collaborate to build the infrastructure and services needed to promote linkage to and retention in care, and to re-engage persons into care who have fallen out of care.20–22 Services can include patient education about the benefits of HIV medical care and adherence to treatment for improving individual health outcomes and preventing HIV transmission.
1. Cohen MS, Chen YQ, McCauley M, et al.. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med. 2011;365:493–505.
2. Lingappa R, Hughes JP, Wang RS, et al.. Estimating the impact of plasma HIV-1 RNA reductions on heterosexual HIV-1 transmission risk. PLoS One. 2010;5:e12598.
3. Gardner EM, McLees MP, Steiner JF, et al.. The spectrum of engagement in HIV care and its relevance to test-and-treat strategies for prevention of HIV infection. Clin Infect Dis. 2011;52:793–800.
5. Valdiserri RO, Forsyth AD, Yakovchenko V, et al.. Measuring what matters: development of standard HIV core indicators across the U.S. Department of Health and Human Services. Public Health Rep. 2013;128:354–359.
10. Marks G, Gardner LI, Craw J, et al.. Entry and retention in medical care among HIV-diagnosed persons: a meta-analysis. AIDS. 2010;24:2665–2678.
11. Gardner EM, Daniloff E, Thrun MW, et al.. Initial linkage and subsequent retention in HIV care for a newly diagnosed HIV-infected cohort in Denver, Colorado. J Int Assoc Provid AIDS Care. 2013. [Epub ahead of print].
12. Buscher A, Mugavero M, Westfall AO, et al.. The association of clinical follow-up intervals in HIV-infected persons with viral suppression on subsequent viral suppression. AIDS Patient Care STDS. 2013;27:459–466.
13. DeNavas-Walt C, Proctor BD, Smith JC. U.S. Census Bureau, Current Population Reports, P60–243, Income, Poverty, and Health Insurance Coverage in the United States. Washington, DC: US Census Bureau 2012: 2011.
14. Turner BJ, Cunningham WE, Duan N, et al.. Delayed medical care after diagnosis in a US national probability sample of persons infected with human immunodeficiency virus. Arch Intern Med. 2000;160:2614–2622.
15. Gardner LI, Metsch LR, Anderson-Mahoney P, et al.. Efficacy of a brief case management intervention to link recently diagnosed HIV-infected persons to care. AIDS. 2005;19:423–431.
16. Bhatia R, Hartman C, Kallen MA, et al.. Persons newly diagnosed with HIV infection are at high risk for depression and poor linkage to care: results from the Steps Study. AIDS Behav. 2011;15:1161–1170.
17. Horstmann E, Brown J, Islam F, et al.. Retaining HIV-infected patients in care: where are we? where do we go from here? Clin Infect Dis. 2010;50:752–761.
18. Wohl AR, Galvan FH, Myers HF, et al.. Do social support, stress, disclosure and stigma influence retention in HIV care for Latino and African American men who have sex with men and women? AIDS Behav. 2011;15:1098–1110.
19. Dombrowski J, Kent J, Buskin S, et al.. An Encouraging HIV care cascade: anomaly, progress, or just more accurate data? Paper presented at: Conference on Retroviruses and Opportunistic Infections; March 3, 2013; Atlanta, GA. Abstract 1027.
20. Aberg JA, Kaplan JE, Libman H, et al.. Primary care guidelines for the management of persons infected with human immunodeficiency virus: 2009 update by the HIV medicine Association of the Infectious Diseases Society of America. Clin Infect Dis. 2009;49:651–681.
21. Centers for Disease Control and Prevention. Revised recommendations for HIV testing of adults, adolescents, and pregnant women in health-care settings. MMWR Morb Mortal Wkly Rep. 2006;55(RR-14):1–17. Available at: http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5514a1.htm
. Accessed June 1, 2013.