HRSA Care ACTION
Linking people who are living with HIV disease to care is one of the major goals set forth in the Ryan White CARE Act Amendments of 2000. Driving the increased emphasis on early intervention services are deeply troubling statistics about the HIV-positive population in the United States. Up to 950,000 people are living with HIV disease in this country, and anywhere from 42 to 59 percent of them—400,000 to 500,000—are "untested, untreated, or both," according to new estimates. One-third of the 670,000 people who know their HIV status may not be receiving care, and an additional 180,000 to 280,000 people are not even diagnosed.1
What may not be readily apparent from these data is that all has not gone badly: The number of annual HIV infections in the United States has fallen from a high of about 150,000 in the mid-1980s to approximately 40,000 since 1992.2 The Ryan White CARE Act now reaches approximately 500,000 people every year, and clinical care and support services have produced remarkable declines in AIDS morbidity and mortality.
At the same time, all is not well. Many people with HIV infection learn about their serostatus relatively late in stage-of-disease. For example, of a group of 24,267 new CARE Act clients served in FY 2000 through the Title III Early Intervention Program, 73.6 percent entered care with CD4+ counts of less than 500, 32 percent were living with AIDS-defining conditions, and an additional 27.1 percent were living with symptoms of HIV infection. These data reflect those found elsewhere, such as those from the Centers of Disease Control and Prevention’s (CDC) Serostatus Approach to Fighting the Epidemic project, where 43 percent of individuals in the study learned their HIV status within just one year of developing AIDS.3
HIV Counseling and Testing: A Pathway to Care
A critical problem has been that so many individuals have not received HIV counseling and testing.
HIV counseling and testing services have changed much since the first HIV antibody test was approved by the Food and Drug Administration in 1985 as a tool for screening the blood supply. Testing soon became a prevention intervention: Telling people about their serostatus presented an opportunity for reinforcing HIV prevention messages, although HIV counseling and testing was accepted with ambivalence in some communities, where individuals feared confidentiality breaches about their HIV status. Other people saw little benefit from receiving a diagnosis of a fatal illness that had no known treatments and brought about the possibility of rejection by friends, family, and community, given the stigma of AIDS, homophobia, and societal discomfort about sexuality.
But the critical linkage between counseling and testing and care became apparent over time, for example, with treatments for opportunistic infections and with ACTG-076 clinical trial findings showing that perinatal transmission rates could be radically reduced. An even higher profile development driving the link between counseling and testing and care was the emergence of highly active antiretroviral therapy (HAART). Today, counseling and testing are inextricably connected to prevention, outreach, and linking HIV-positive individuals to care.
Not Being Tested, Not Returning for Results
The United States has approximately 10,000 publicly funded HIV counseling and testing sites in addition to thousands of sites that are privately funded. However, more than one-fourth of individuals at high risk for HIV disease have not received HIV counseling and testing, and one-fourth of people who receive HIV testing do not return for their results.
Among those least likely to return are youth, people with a sexually transmitted disease diagnosis, and African Americans. However, minority individuals identified as being at high risk are more likely to have been tested than whites classified as high risk according to CDC’s National Health Interview Survey.4,5 The survey also found that motivations for testing vary by race and ethnicity. The high rates of HIV testing among minority groups may reflect their concern about the epidemic, as exhibited in national surveys sponsored by the Kaiser Family Foundation.6,7
Reasons for not accessing HIV counseling and testing and not returning for test results are many. Some people may feel little need to know their serostatus, misunderstanding the urgency to receive treatment before symptoms develop or, alternatively, believing that early death is inevitable. Others do not access services because of lack of symptoms: Like many people at risk for any number of diagnoses, those needing counseling and testing don’t seek medical help if they don’t feel sick. Another reason is the lack of access to primary care, especially primary care with a preventive medicine component and appropriate HIV screening.
Other problems abound, and more than 20 years after the onset of the epidemic, fear and stigma are still primary among them: In a 1997 1999 survey of American attitudes about HIV/AIDS, roughly one-fifth of respondents feared people living with HIV disease.8 Also at play is the prospect of dealing with a disjointed, non-user-friendly health care system and with HIV treatment itself, which entails the arduous task of finding care and adhering to possibly lifelong, complex treatments. Failure to learn one’s HIV status and enroll in care—or failure to enroll despite that knowledge—is also surely tied to socioeconomic issues and personal resources as well as to active substance abuse and mental illness.
Recently released revised guidelines for HIV counseling and testing and referral include many recommendations to ensure that HIV-infected individuals (as well as those at risk) have access to appropriate medical, preventive, and support services. The guidelines recommend immediate entry into care after learning one’s serostatus, but significant barriers exist. Consider that many tests occur in emergency rooms and care settings not designed to provide HIV care, referrals, or support services for keeping people in care over time. Referrals are essential for linking people who test positive with the care they need, but the challenge of keeping a referral appointment can be monumental to someone who has just received an HIV-positive test result—someone who is probably already encumbered by a host of serious problems and who may lack the resources, both financial and emotional, for dealing with a new one.
Are current HIV testing and counseling ser vices sufficient to the task? Counseling and testing services are now eligible for CARE Act Titles I and II funding, but a number of grantees have opted not to fund them, according to their project officers, in light of needs assessments showing that existing testing services are adequate. The more crucial problem is linking individuals unaware of their risk and individuals facing barriers to counseling and testing to the services they need if they are going to be brought into care.
Linking People to Care: Finding Solutions
The stark statistics about the number of people out of care reveal the need for more effective outreach, counseling and testing, and referral programs as well as the need to more effectively implement programs that are already in place.
The barriers to even the most culturally competent, appropriately implemented programs should not be underestimated. Providers funded through the CARE Act and other programs have endeavored to link HIV-positive individuals with early intervention services for more than a decade. Despite their valiant efforts, the inventiveness of their programs, and their responsiveness to the changing epidemic, estimates of the number of individuals out of care have not changed dramatically, in part because people with HIV disease are living longer and because about 40,000 new infections are reported each year. Moreover, at the very time that the community has learned more about linking people with services, the population of individuals living with HIV infection has become more "hard-to-reach": They are more alienated from the health care system; more likely to be uninsured; and more likely to encounter the interwoven set of problems related to poverty, comorbidity, and disenfranchisement.
Yet, the people out of care today constitute a population to whom there is much more to offer than there was 20 years ago; for this reason alone, efforts to more effectively reach those not in care must reflect the possibilities that exist in today’s treatment. On the testing side, technology may help. Saliva-based tests—which involve no needles, no blood, and no pain—might break down walls, say some experts, because they are readily adaptable to field use and eliminate client discomfort about having blood drawn. Home testing is being used by some individuals and could increase access to HIV testing for greater numbers if concerns about incorrect use of the test and the consequences of not getting face-to-face counseling, as well as individual financial issues, could be addressed.
Counseling and testing alone, no matter how painless and accessible, are not going to solve the problem. Early intervention efforts must reflect both the needs of the hard-to-reach population and a piece of knowledge that is now a commonplace among CARE Act providers: Unless a person’s entire set of needs is addressed, he or she will find it exceedingly difficult to stay in care over time. We see these factors addressed in programs like that at New York City’s Callen-Lorde Community Health Center, a Title III grantee that offers prevention and care programs and is seeking to better guide HIV-positive men who have sex with men into care by augmenting HIV pretest counseling through "forecasting" (i.e., anticipating) needs, particularly for support services. In Philadelphia, care outreach workers work with counseling and testing sites so that when someone tests HIV positive, he or she is offered a second counseling session with a peer-trained care outreach worker. The goal of this expanded encounter time is simple: to link people to clinical care and help them stay there over time.
Outreach and the CARE Act
The array of reasons people are out of care calls not just for more outreach, but for more kinds of outreach. Developing effective outreach interventions is not a riskfree enterprise, however. Care providers often have to step into the world of complex human factors that motivate both care-seeking and risky behaviors, the latter of which appear to occur with alarming frequency among some populations, despite what we know about HIV transmission. Success is possible, however, and it has precedent, not just in the achievement of lower HIV incidence, but also in the nation’s battle against syphilis. Cases of syphilis have dropped by 90 percent since 1990 and are at their lowest level since reporting began in 1941.
New CARE Act Policy
Although the goal seems simple—to get people with HIV disease into care—complexities abound regarding whom to target and how to do so. The CARE Act Amendments of 2000 require CARE Act programs to focus on people who are HIV-positive and not in care and to address disparities involving groups least likely to be in care. These requirementss are reflected in a recently released HAB policy (see page 7) on the topic, which identifies the following steps as critical to successful outreach:
Knowing where to focus outreach requires data, yet data cannot provide all the answers. Quantitative information often focuses on demographic descriptions but may reveal little about how people think, their cultures, or their motivations. Understanding the needs of those who are hardest to reach may be the most difficult challenge because they have so little contact with organized service systems.
CARE Act Providers and Outreach Mechanisms
With outreach policy now firmly in place, grantees are increasingly focusing on how to most effectively use their CARE Act funds for outreach. Grantees are currently implementing many of the following outreach mechanisms:
Street outreach takes many forms, as revealed by a sample of interventions in Title I Eligible Metropolitan Areas. In Philadelphia, outreach workers go into parks frequented by high-risk populations in the evening; Jersey City outreach workers go to truck stops frequented by transient sex workers; and outreach workers in Caguas, Puerto Rico, seek to reach individuals in shooting galleries.
Vans and other vehicles allow providers to take outreach where potential clients congregate. New York City’s William F. Ryan Community Health Center, a recipient of both Title I and Title III funds, operates two vans. Both provide HIV counseling and oral HIV testing, and one provides more extensive medical services. "It’s not that the van is all that innovative," says the center’s former Title III project officer, Betty Gramley, "[but rather that] they’ve determined where to put the van, times of day, how to staff it, and how to get people from the van to the center. They’ve developed tools so that they can track their progress at getting people into care, like different color referral cards for different locations to give them a paper trail" regarding where clients were encountered.
The lesson for others: Don’t just take the van out—rather, establish evaluation criteria, collect data, and evaluate to see whether the program is working. For example, does outreach at certain times of day generate a high number of "hits"?
Outreach the Second Time Around
It is not surprising that people with complex needs and competing demands sometimes drop out of care. Active substance abusers and individuals revolving in and out of correctional settings are examples of two populations that face significant barriers to staying in care. But other populations face barriers as well. Individuals who feel well may see little reason to keep a medical appointment. Individuals whose providers relocate to new neighborhoods, or who themselves must relocate because of rising rents, may also suffer interruptions in care. In each of these situations, new outreach interventions may be required.
Identifying More Effective Interventions: The SPNS Outreach Initiative
HAB funded 17 SPNS Outreach Initiative projects in 2001 for Phase I (2 years) of a 5-year initiative. The projects use many of the mechanisms identified above to bring people into care. The project grantees have identified a wide array of target audiences. Among them are residents of single room occupancy hotels in New York; ex-offenders in Boston, Chicago, and Providence, Rhode Island; women and children in Miami; African Americans and Hispanics in St. Louis, Missouri, and Washington, DC; and, in Boston, men of color who have sex with men.
Each project seeks to increase use of clinical care, decrease substance abuse, and enhance client skills in such areas as health-seeking behaviors and motivations. The activities underscore the idea that outreach does not exist in a vacuum but is part of a continuum of interwoven services whose relationships are critical for building a comprehensive care system. Examples of the projects are as follows:
To illustrate, one project will survey 150 current participants three times during a 6-month period using survey formats available at SPNS-related Web sites. Data will be supplemented by clinical and case-management data currently in a city database. Finally, the grantee plans to develop a "stability index" that can be used to measure participant changes during the course of the project and identify additional areas for project quality improvement.
While hundreds of thousands of people in the United States enjoy the miracle of HAART and other treatments, others sit it out on the sidelines. For some, staying "treatment naive" is the best course of action, but the decision to forego HAART or other treatment is no reason for not being in the care of a qualified care team. Other people simply don’t have access to care, or at least think that they don’t. Still others don’t know they need care.
This situation is not due to lack of effort on the part of both care and prevention providers. Indeed, CARE Act grantees have implemented outreach programs from the beginning: HIV "disease management" early intervention initiatives (funded through the Title III Early Intervention Program and the Title IV program for women, children, youth, and families) have focused on connecting individuals with care and services. Grantees receiving Title I Eligible Metropolitan Areas and Title II States and Territories have also exhibited a determination to reach people not in care, and with the CARE Act Amendments of 2000, they were given considerably more latitude with which to do so.
But the "easy to reach" have been reached, and many of those out of care are "hard to reach" indeed. People living with HIV disease and not in care often suffer a whole host of problems, none of which have simple solutions. It is a population that in many ways reflects that which emerged at the very beginning of the epidemic—a constellation of people distanced from society’s institutions—but its problems are unique and have crucial implications for programs today. That is, what worked before may not work now.
1. Fleming PL, Byers RH, Sweeney PA, et al. HIV prevalence in the United States, 2000. Paper presented at: 9th Conference on Retroviruses and Opportunistic Infections; Seattle, WA; February 24-28, 2002. Abstract 11. Available at: http://220.127.116.11/2002/Abstract/13996.htm.
2. HIV and AIDS—United States, 1981-2000. MMWR. 2001;50(21):430-4. Available at: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5021a2.htm.
3. Fleming et al., 2002.
4. Wortley PM, Chu SY, Diaz T, et al. HIV testing patterns: where, why, and when were persons with AIDS tested for HIV? AIDS. 1995;9(5):487-92.
5. Centers for Disease Control and Prevention. HIV testing among racial/ethnic minorities: United States, 1999. MMWR. 2001;50 (47):1054-8. Available at: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5047a3.htm.
6. Aragon R, Kates J, Greene, L. African Americans’ Views of the HIV/AIDS Epidemic at 20 Years: Findings From a National Survey. Menlo Park, CA: Henry J. Kaiser Family Foundation; 2001. Available at: http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=7893.
7. Aragon R, Kates J, Greene, L. Latinos’ Views of the HIV/AIDS Epidemic at 20 Years: Findings From a National Survey. Menlo Park, CA: Henry J. Kaiser Family Foundation; 2001. Available at: http://www.kaisernetwork.org/daily_reports/rep_index.cfm?DR_ID=7893.
8. Herek GM, Capitanio JP, Widaman KF. HIV-related stigma and knowledge in the United States: prevalence and trends, 1991 1999. Am J Public Health. 2002;92:371-7.
New Policy Released Regarding Use of CARE Act Funds for Outreach Services
The HIV/AIDS Bureau (HAB) recently issued a final policy notice on the use of CARE Act funds to provide outreach services (HAB Policy Notice 0201). The new policy reflects the provisions in the Ryan White CARE Act Amendments of 2000; replaces a Title I and Title II policy, "Division of Service Systems (DSS) Program Policy Guidance No. 3: Outreach, June 1, 2000" (formerly Policy No. 97-03, March 31, 1997); and applies to all Titles and programs of the CARE Act, except the Special Projects of National Significance program.
The new requirements give grantees increased flexibility to provide outreach services that are designed to identify persons at high risk for HIV and to bring HIV-infected persons into care and link them with an array of care and support services. Outreach services may be provided both to HIV-infected persons who know their status and to those who do not. Each grantee must determine who these persons are and where targeted outreach services are most likely to reach them; the objective is always to help them gain access to and stay in care. For example, a grantee could fund outreach workers to locate people who tested positive and were informed of their test results but never returned for treatment. A grantee could use local epidemiological data to target HIV-infected women using an appropriate media campaign that informs them of the location and hours of a clinic in their area.
On October 20, 2000, the Ryan White CARE Act Amendments of 2000 (Public Law 106-345) were enacted, reauthorizing the CARE Act through 2005. During the reauthorization process, Congress paid close attention to significant changes in the HIV/AIDS epidemic and treatments that occurred between 1995 and 2000. In 2000, the Centers for Disease Control and Prevention (CDC) estimated that there were between 800,000 and 900,000 persons living with HIV disease in the United States, with 40,000 new HIV infections annually. CDC found that only approximately one-third of those individuals are in medical care, one-third know their HIV status but are not in medical care, and one-third do not know their HIV status.
In response, Congress placed a new emphasis on identifying people with HIV disease and referring them into regular care and treatment, especially under Title I and II, the largest CARE Act programs. The primary goal of this new emphasis was to improve early diagnosis of HIV and to enhance access to HIV care and treatment for persons infected or at high risk for HIV infection.
In 2002, CDC updated its HIV prevalence estimates and determined that 850,000 to 950,000 people are living with HIV/AIDS. The proportion of infected persons who know their status is increasing. CDC found that about 75 percent (670,000) of this group have been diagnosed but a large proportion, approximately one-third, may not be receiving ongoing care. CDC estimates that about 400,000 to 500,000 HIV-infected persons may not have been tested, may not be receiving treatment, or both.
New Outreach Service Guidance for Grantees
All CARE Act grantees, including Titles I and II grantees, can now use funds to pay for HIV counseling and testing, outreach, and referral services. People who may or may not know they are HIV positive are often hesitant to seek care for various reasons (e.g., stigma, lack of insurance, and providers who lack cultural competence). The goal of outreach services is to link such people with care that would ultimately result in ongoing treatment and increased adherence to medication regimens.
Policy for Use of Ryan White CARE Act Funds for Outreach Services
Federal funds received under the Ryan White CARE Act may be used for outreach activities that have as their principal purpose targeted activities, under specific needs assessment-based service categories, that can identify individuals with HIV disease, including those who know their HIV status and are not in care as well as those whose HIV status is unknown. The goal is to raise their awareness of the availability of HIV-related services so that they enroll in primary care, AIDS Drug Assistance Programs, and support services that enable them to remain in care.
Outreach activities supported with CARE Act funds must be
Activities also must be designed to do the following:
Outreach activities must be designed to provide quantifiable outcome measures, such as the number of HIVpositive individuals brought into care through the initiative. They must also be determined to be a priority service by Title I planning bodies and Title II consortia or State planning bodies and must be necessary to implement the EMA or Statewide comprehensive plan and associated strategies.
Funds awarded under the CARE Act may not be used for outreach activities that exclusively promote HIV prevention education. Broad awareness activities that address the general public (e.g., poster campaigns for display on public transit and TV or radio announcements) may be funded, provided that they are targeted and contain HIV information with explicit and clear links to health care services.
Grantees also must ensure that Ryan White CARE Act funds remain the payer of last resort. Funds used for outreach services must be used to supplement, not supplant, funds currently used from local, State, and Federal agency programs.
Although HRSA/HAB policy does not specify all of the types of outreach services that can be funded with CARE Act funds, grantees and providers are responsible for using CARE Act funds for outreach services and plans that have been approved in their grant award. The plan, when submitted to HRSA/HAB, must include in the budget and narrative
Additional information regarding this new policy is available on the HRSA/HAB Web site, at http://hab.hrsa.gov/history/habpolicies.htm, notice 02-01.
For more information, call (301) 443-7036
HEALTH RESOURCES AND SERVICES ADMINISTRATION - HIV/AIDS BUREAU
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HRSA Care ACTION