Improved Access to Early Intervention Services: Expanding Access to Care

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act Amendments of 2000 authorized, for the first time, funding of early intervention services (EIS) through Title I grants to Eligible Metropolitan Areas and Title II grants to States and Territories. A recent study by the Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB) indicates that this change has helped make important strides in reaching people living with HIV/AIDS (PLWHA) in the United States who do not know their serostatus.1

Prior to 2000, EIS could be funded only under Title III of the CARE Act—whose very broad definition of EIS includes outreach, counseling and testing, primary care, support and referral—and under the Title IV program. Funds from Titles I and II could be used to provide primary care and support services for PLWHA but not to provide outreach or counseling and testing. When Congress made the change to allow funding of outreach and counseling and testing under Titles I and II, an estimated 850,000 to 950,000 people were living with HIV/AIDS in the United States.2 Many were unaware of their serostatus—a problem that remains significant today.

The CDC estimates that 1.039 million to 1.185 million people
in the United States are living with HIV/AIDS.

In mid-June, the Centers for Disease Control and Prevention (CDC) announced that an estimated 1.039 million to 1.185 million people in the United States are living with HIV/AIDS, of whom an estimated 24 to 27 percent are unaware of their serostatus.3 When combined with the number who know their serostatus but who receive care intermittently at best, it is clear that hundreds of thousands of PLWHA in the United States are not receiving care in keeping with current treatment guidelines.

The problem is illustrated by data from five cities conducting HIV testing as part of CDC’s National HIV Behavioral Surveillance System. Results reveal high HIV prevalence among men who have sex with men (MSM), particularly among African-American MSM (Table 1). Although 92 percent of men in the study reported that they had been tested previously (64 percent in the past year), almost half of the men who tested HIV positive were unaware of their infection.4 Taken together, these findings and the new surveillance data reflect what CARE Act providers have known for some time: The need for services is on the rise, and the need for EIS among those not in care has never been greater.

Table 1. HIV Prevalence and Proportion with Undiagnosed HIV Infection, Men Who Have Sex with Men, Five Cities, 2004–2005
Characteristic	Total Tested	HIV Prevalence n (%)	Undiagnosed HIV Infection n (%)
Total	1767	450 (25)	217 (48)
Age
18–24	410	57 (14)	45 (79)
25–29	303	53 (17)	37 (70)
30–39	585	171 (29)	83 (49)
40–49	367	137 (37)	41 (30)
≥50	102	32 (31)	11 (34)
Race
White	616	127 (21)	23 (18)
Black	444	206 (46)	139 (67)
Hispanic	466	80 (17)	38 (48)
Asian/Pacific Islander	95	7 (7)	2 (29)
Native American/Alaska Native	<10	<10 (29)	<10 (100)
Multiracial/other	123	25 (20)	13 (52)
Source: Greenberg A. New Approaches to Tracking the HIV Epidemic in the United States. Paper presented at the 2005 National HIV Prevention Conference, Atlanta, GA, June 13, 2005. Slide 10. Available at: http://www.kaisernetwork.org/health_cast/uploaded_files/Greenberg_Monday.pdf.

 

Outreach Must Be Narrowly Targeted

Although grantees under Titles I through IV can use funds for EIS, broad-based prevention education to the general public is still not supported under the CARE Act. Instead, services eligible for EIS funding are narrowly defined and must meet the following two criteria:

• Directed to populations, determined through local epidemiologic data or through review of service data, to be at disproportionate risk for HIV infection.

• Conducted in a manner (e.g., time of day, events, sites, method, cultural appropriateness) that is tailored to the target population known to have delayed seeking care.

HIV/AIDS Bureau Study

A HAB-sponsored study conducted in early 2005 provided an overview of HAB’s success in rolling out the new Title I and Title II EIS provisions along with an analysis of CARE Act providers’ success in counseling and testing high-risk populations. In the first part of the study, researchers from HAB’s Division of Science and Policy, Policy Development Branch, conducted a thorough literature review of the publications, manuals, policies, letters, and other technical assistance and information developed to describe the new EIS service category and encourage Title I and Title II grantees to understand and use it. They concluded that through guidance documents, technical assistance, and a policy notice, HAB has provided a great deal of targeted and relevant information to the grantee community and that the information has contributed to the counseling and testing successes in the CARE Act programs as a whole.

The analysts also examined the budgets for all Title I and Title II grantees and determined that grantees allocated approximately $2.7 million in 2002 and $3.7 million in 2003 to EIS. From 2002 to 2003, Title I allocations for EIS increased by 25 percent. Title II EIS allocations over the same period totaled $1.2 million.

The second part of the study focused on the EIS subcategory of counseling and testing. An analysis of CARE Act Data Report (CADR) data from Title I and Title II subgrantees and from Title III and Title IV grantees was conducted. The goal was to determine the impact of the legislative change that permitted the targeting of counseling and testing to populations at high risk for HIV.

Findings from the study demonstrated that the CARE Act is funding programs that are successful at counseling and testing. In fact, in 2003 (the most recent year for which data are available), PLWHA receiving HIV tests in CARE Act–funded programs returned a higher rate than those tested in CDC programs (Table 2). This difference occurred for several reasons, primarily because of the CDC’s role to cast a much wider net than HRSA’s. The data does seem to convey that HRSA is successfully reaching people at highest risk of undiagnosed HIV infection and is getting those who are tested to return for their test results.

Specific findings of the HAB study are as follows1:

• From 2002 to 2003, the number of people served through all CARE Act titles who learned their serostatus increased by 3 percent. This rate surpassed the HAB Performance Assessment Rating Tool (PART) goal of a 2 percent increase.

• 2.3 percent of all people tested under CARE Act programs were found to be HIV positive.

• The return rate of people who tested positive was 83 percent in 2002 and 81 percent in 2003.

Table 2. Comparison of HRSA and CDC HIV Counseling and Testing Data
	HRSA/HAB (2003)	CDC (2000)1
Number tested	673,291	2,000,000
Individuals testing positive (%)	2.3	1.3 (1998)2
Proportion of HIV-positive individuals returning for results (return rate) (%)	81	69
1 Centers for Disease Control and Prevention (CDC). Advancing HIV prevention: new strategies for a changing epidemic—United States, 2003. MMWR. 2003;52(15):330. 2 CDC. HIV Counseling and Testing in Publicly Funded Sites—Annual Report 1997 and 1998. Atlanta, GA: CDC; 2001.

Examining the data further—specifically programs that used CARE Act funds to provide counseling and testing—analysts learned that the number of people tested for HIV in 2003 increased by 14 percent over 2002 and that the people who learned their serostatus increased by 29 percent. The proportion who tested positive was 2.4 percent in both years, a small increase from the average of 2.3 percent in previous years.

Scrutiny of data on just the Title I- and II-funded programs that used CARE Act funds to provide counseling and testing revealed that from 2002 to 2003, the number of people who were tested for HIV increased by 13 percent and that the number of people who learned their serostatus increased by 28 percent. The proportion testing positive was 2.7 percent in 2002 and 2.6 percent in 2003, higher than the 2.4 percent proportion for all titles.

Getting Test Results to People Who Are Tested

Previous reports have indicated that people receiving a positive HIV diagnosis have a mean delay of entry into care of 3 months; 32 percent of patients delay treatment for more than 2 years, and 18 percent delay for more than 5 years.5 People who are tested for HIV but fail to return for their test results lose out on the benefits of early treatment. Counseling and testing providers therefore work hard, often using creative measures, to facilitate patient follow-up for test results and care. Interviews with three providers receiving Title I or Title II CARE Act funds—Friends for Life Corporation (Memphis, TN), Olive View-UCLA Medical Center (Los Angeles, CA), and River Region Human Services (Jacksonville, FL)—shed light on specific strategies for successful counseling and testing. Table 3 highlights the results of those programs in 2003.

Table 3. Outreach Results for Three CARE Act-Funded Programs, 2003
Provider Name	No. of Tests (% Positive)	No. of HIV-Positive Individuals	HIV-Positive Individuals Returning for Results (%)
Friends for Life (TN)	891 (2)	14	79
Olive View-UCLA Medical Center (CA)	457 (14)	62	100
River Region Human Services (FL)	4,039 (2)	89	88
Source: Program data.

Friends for Life is the oldest and most comprehensive AIDS service organization in the Mid-South. Its mission is to help people affected by HIV/AIDS live well, so it provides comprehensive social and support services. Olive View-UCLA Medical Center is one of six hospitals operated by the Los Angeles County Department of Health Services. Olive View-UCLA is a general acute-care teaching hospital that serves more than 1.5 million residents of the San Fernando Valley and adjacent north Los Angeles. River Region Human Services is a “one-stop shop” that prioritizes helping people achieve a functional, independent lifestyle free from the use of dependency-producing drugs, debilitating mental disorders, involvement in antisocial and criminal activities, and HIV/AIDS and other communicable diseases.

Targeting Individuals and Communities at High Risk

Consistent with the CARE Act’s stipulation that EIS services under Titles I and II be targeted to individuals and communities at high risk, Friends for Life, Olive View-UCLA Medical Center, and River Region Human Services all narrowly focus their counseling and testing efforts.

Friends for Life uses epidemiologic data to identify Memphis and Shelby County zip codes with high seroprevalence and then conducts advertising campaigns and offers counseling and testing in those neighborhoods. Gina Fortner, director of program management, explains:

We have regularly scheduled testing in high-risk residential areas. That’s where we find so many positives. We’ve been getting into African-American churches, trying to make testing an unremarkable, commonplace event, more like cholesterol screening. We also go to festivals and other occasions in those neighborhoods.

Looking toward the future, Fortner notes, “We want to be in those plasma and blood centers, where people sell their blood. We got a report that a startling number of people are being identified as HIV-positive in those places.”

Most of River Region Human Services’ clients are substance abusers with low incomes, a lack of education, and a minimal work skill level. River Region’s efforts center on street outreach in Jacksonville communities with high rates of substance abuse.

Olive View-UCLA Medical Center differs from the other two organizations in that it is an inpatient hospital with a largely minority and indigent population. Hospital staff conduct risk assessments with every hospitalized patient and offer counseling and testing to everyone at risk. Because the population is generally at high risk and many patients present symptomatic HIV/AIDS, it is no surprise that Olive View also has a staggering 14 percent seropositivity rate.

The first step to linking PLWHA with care is to inform them of their test results. Lolita Hill, director of AIDS outreach at River Region Human Services, is clear:

Quality pretest counseling is the key to getting people to return. We spend at least 15 to 20 minutes with each client. We do a personal risk assessment. We discuss the meaning of the test and what the results mean. Sometimes they think a “positive” result means it’s good. We stress the importance of returning for results. We document phone number, address, family members’ address and phone number, places they frequent, all so we can follow up with a home visit or a telephone call.

Hill adds, “We also tell them, ‘Don’t take the test if you are not ready for the results.’”

To encourage returns, River Region Human Services maintains hours that fit the needs of its clientele. Instead of the normal 9-to-5 business day, the facility opens its doors at 7:00 a.m. and does not close until 7:30 p.m. The office also is open every Saturday. Hill remarks, “If someone requests a time even earlier or later than our hours, I’ll do that. I’ll schedule it. We do whatever it takes to win community confidence.”

Fortner explains the number one reason for Friends for Life’s high rate of return:

We return to them! We’ve done a big push to go back to the places we do community testing in order to give the results. It seems to be working. If we do outreach at a fair, for example, we tell the clients exactly when we will be back at the same location to give them results.

Friends for Life also provides testing weekly at its main office. Fortner says, “A large percentage of our folks come back to our office because we are in an easy-to-get-to location; our staff is very friendly, and we are known in the community for respecting confidentiality.”

At Olive View-UCLA Medical Center, many clients do not have to return for their results because they are inpatients. Carol Sebastian, nursing care specialist and HIV coordinator explains, “For inpatients with positive results, their doctor calls us and we go upstairs and, in most cases, disclose the results together. Then we stay and do the posttest counseling.” She notes that outpatients with negative results receive their results in 2 days; outpatients with positive results receive results in 1 week, after a confirmatory test is done.

Because Sebastian works in a large facility, she has taken extra steps to ensure that she learns of all HIV-positive test results: She worked with the hospital information technology staff to have all HIV-positive test results transmitted to a dedicated printer in her locked office.

Linking People with Care

The first step in bringing people into care is to get them tested. The second step occurs during the posttest counseling session, when seropositive results are revealed and the counselor—or counseling team—works with the client to take the first steps toward receiving medical and supportive care.

In the inpatient setting of Olive View-UCLA Medical Center, counselors disclose negative test results, but HIV-positive test results are provided by a medical doctor. Once that initial conversation has taken place, Sebastian is called. She then visits the patient’s bedside for a full posttest counseling session. She explains:

If the patient is going to be discharged soon, we show up at the bedside with an appointment in hand for their follow-up visit. If they are staying in the hospital for a while, we wait and schedule the follow-up when the discharge date is approaching.

Making preappointments is a linchpin of River Region Human Services’ posttest counseling strategy as well. Hill states, “When a client tests positive, the counselor links that client to a medical provider and a case manager on the spot.” Hill instructs her staff:

Before you go out into the community, line up your partners. Make sure doctors and case managers have set aside specific appointment times for your clients. If I’m positive and you find me, I’m not going to want to sit there while you track down an appointment.

River Region Human Services counselors also schedule a follow-up appointment with all HIV-positive clients to help ensure that they indeed are connected with a medical provider, case manager, and any other needed services.

Friends for Life works closely with the Memphis and Shelby County health departments to deliver results and conduct posttest counseling sessions. A team meets with the client to give the results when a test is positive. The team includes, at a minimum, the tester from Friends for Life and a surveillance staffer from the health department. The team may include a consumer advocate and a case manager from the health department. If the HIV-positive client is younger than 24 years old, a staff person from St. Jude Children’s Research Hospital also joins the team. Like River Region Human Services and Olive View-UCLA Medical Center, Friends for Life provides seropositive clients with appointment times with a medical provider. Youths always are able to see a provider within 24 hours; adults sometimes have to wait a short time for their first medical visit.

Partner Notification

Disclosure of HIV status to a sexual partner is difficult for most people because it reveals information about sexual or drug-using behavior and suggests that the partner might have been exposed to the virus. As documented in multiple studies, profound social stigma is still associated with HIV disease.6 Disclosure of HIV seropositivity may provoke violence in intimate relationships.7,8

Given the challenges of notifying a partner about a seropositive test result, some people who test positive find benefit in partner notification support services. CARE Act grantees offer partner notification as an optional, confidential service to help seropositive clients let their partners know of their increased risk of HIV infection. Partner notification also works as a case-finding strategy. In a 2002 analysis of nine studies of partner counseling and referral services, between 8 and 39 percent of partners tested were found to have previously undiagnosed HIV infection.9

Both River Region Human Services and Olive View-UCLA Medical Center offer partner notification services to their clients. At River Region Human Services, the posttesting counseling session includes information about partner notification. Hill explains,

We know that most new HIV infections originate from folks not yet aware of their status. We want to find those people. So we build trust with our clients and explain that the health department won’t reveal names to partners. We let them know that partner notification is a strategy to control and prevent this disease.

If a client consents to partner notification, River Region Human Service counselors give the partner’s name to a disease intervention specialist at the health department.

At Olive View-UCLA Medical Center, a gradual, team approach plays a key role in supporting counselors’ efforts to encourage partner notification. Sebastian says,

During the posttest counseling, we discuss partner notification. We don’t expect them to disclose partners’ names right away. They are too overwhelmed. We come back the next day to talk and to socialize. Then we ask again. We discuss confidentiality. Once they agree, I call the STD nurse, who comes immediately to the patient’s room to start the process.

Collaboration Is Key

When HIV service providers talk about how they can be most effective, collaboration is a consistent theme. To take advantage of the wisdom and resources of other Memphis-area HIV testing providers, Friends for Life established the Memphis HIV Prevention Network and participates in the Memphis HIV Testing Initiative. These groups meet quarterly to ensure that services are not being duplicated, that high-risk populations are being served, and that efforts are coordinated for the four big “HIV Days of Significance” (World AIDS Day, National Black HIV/AIDS Awareness and Information Day, National HIV Testing Day, and National Latino HIV/AIDS Awareness Day). Fortner emphasizes, “Collaborate, collaborate, collaborate! We cannot do that enough. There is such limited money for case finding [and] prevention. Unless you collaborate, money and tests will be wasted and people will not stop getting infected.”

Hill echoes this sentiment. River Region Human Services convenes a Community Review Panel composed of health department representatives, HIV service providers, and indigenous community leaders. The panel meets every month to share strategies, discuss appropriate testing venues, and build community support for HIV prevention efforts. Hill explains, “At the meeting, everyone shares what’s going on in the community. It also allows us to collaborate to spread resources. If one organization is testing at this location, River Region will go to another one.”

She adds that in her experience, it is important to involve local community leaders:

Choose people from that community who will help you penetrate that community. Don’t overlook the lady who cooks and sells dinner every night. She might not have clout in the wider community, but she does in this community. You must send your message through that person to operate in that community.

Strategies That Work

CARE Act–funded programs use a variety of strategies to facilitate patient follow-up. Any counseling and testing programs that wish to increase their efficacy should consider the following lessons learned:

• Provide follow-up counseling and access to test results at a variety of times and locations to make it convenient for clients. Successful providers of services realize that they must often return to the locations where people were initially tested. They do not wait for clients to come to them. They also operate outside of standard business hours.

• Provide transportation services when necessary. CARE Act providers often serve people who have few financial resources. Even bus fare can impose a serious financial burden on some people.

• Use rapid testing. Oraquick rapid tests, which can use either saliva or blood, provide test results in about 20 minutes, thereby eliminating the need to ask clients to return days later.

• Ensure the cultural competence of the counseling and testing process and staff. Staff members who understand the issues related to gender, racial and ethnic diversity, age, sexual orientation, language, and substance abuse can help clients feel safe and comfortable in the testing and counseling process.

• Scrupulously maintain confidentiality. Stigma around HIV/AIDS is still severe. Clients need to have absolute confidence that their results will not be revealed to anyone else. Clients also appreciate measures that keep the mere fact of their test taking confidential (e.g., offering HIV testing along with other services so that it is not obvious that someone leaving the site just “took the test”).

• Quickly link HIV-positive clients to care. The most successful programs have instituted the practice of delivering positive test results hand-in-hand with medical and case management appointments. Reducing the lag time between receiving a diagnosis and meeting with providers is crucial.

Together, HAB and CARE Act grantees and subgrantees have met Congress’ goal to identify and refer people with HIV disease into regular care and treatment, especially under Titles I and II.

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Importance of Counseling and Testing and Referral Services

• Identify people at high risk for HIV
• Bring HIV-positive people into early treatment and continued care
• Prevent transmission to others
• Help seropositive clients take advantage of medical care that can prolong lives

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Rapid Testing and Enhancing Access to Care

Historically, between 12.5 and 33 percent of people tested for HIV have never received their test results.1-4 Moreover, before the availability of rapid testing, many people, some who were contacted at public venues such as parks, sometimes forewent testing altogether because it required that they access services in a clinic-based setting. Both of these factors have posed serious barriers to care for people living with HIV disease.

Rapid testing is helping providers address these issues. Because results from the most advanced rapid tests can be provided in minutes, the need for people to return at a later time to retrieve test results is eliminated. And, because rapid testing can more easily be used in community settings than can traditional testing methodologies, people can receive counseling and testing in many different locations, eliminating the need for referral to a clinic.

Ultimately, the result of rapid testing is that more people are tested for HIV, more people receive their test results, and more people enter into care. Unfortunately, rapid tests can—and do—produce false positives at a rate of about 1 percent, but the tests are becoming increasingly reliable, and their benefits far outweigh their shortcomings.

For more information on rapid HIV tests, visit www.cdc.gov/hiv/rapid_testing/ or www.thebody.com/treat/testing_rapid.html.

1. Centers for Disease Control and Prevention (CDC). HIV Counseling and Testing in Publicly Funded Sites: 1995 summary report. Atlanta, GA: U.S. Department of Health and Human Services, CDC, 1997.
2. Tao G, Branson B, Kassler WJ, et al. Rates of receiving HIV test results: data from the U.S. National Health Interview Survey for 1994 and 1995. JAIDS. 1999;22:395-400.
3. Valdiserri RO, Moore M, Gerber AS, et al. A study of clients returning for counseling after HIV testing. Pub Health Rep. 1996;108:12-8.
4. Molitor F, Bell RA, Truax SR. Predictors of failure to return for HIV test result and counseling by test site type. AIDS Educ Prev.1999;11:1-13.

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Resources for Grantees

• Policy Notice 02-01: The Use of Ryan White CARE Act Funds for Outreach Services (http://hab.hrsa.gov/law/0201.htm)
• Reauthorization Letters Supporting Early Intervention Services Maintaining Appropriate Referral Relationships (see Letter 7) (http://hab.hrsa.gov/history/reauthopolicy.htm)
• HRSA CAREAction newsletters
• January 2002 (http://hab.hrsa.gov/publications/january2002.htm)
• June 2002 (http://hab.hrsa.gov/publications/june2002.htm)
• December 2002 (http://hab.hrsa.gov/publications/december2002.htm)

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Early Intervention Services Defined

• Pretest counseling and testing
• Posttest counseling
• Help HIV-positive clients understand and modify behaviors that may compromise
  their health
• Focus on secondary prevention
• Information and education
• Provide practical information, including information on the availability and use
  of treatments for newly diagnosed PLWHA
• Referral to services
• Refer HIV-negative clients to appropriate prevention and risk-reduction programs
• Refer HIV-positive clients to primary care and case management services
• Feedback mechanism
• A system for assessing whether follow-up services were provided after referral