Illine Chung-Eddie, New York, NY

PART iV. administration and programs

outcome measures
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program evaluation
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increasingly productive care act programs

David Singh, New York, NY

CARE Act Programs Overview

The CARE Act is administered by the Health Resources and Services administration’s HIV/AIDS Bureau (HAB), which provides management and technical services to CARE Act grantees and providers across the country. The goals of the Bureau are to fulfill its Federal administrative obligations regarding CARE Act administration; develop and implement policy that furthers the effectiveness of CARE Act programs; and, through technical assistance, training, and special initiatives, improve the effectiveness of CARE Act programs and, ultimately, the health and quality of life of people living with HIV disease in the United States.

The CARE Act programs are diverse: they have to be, because of the diverse communities affected by the epidemic and the diverse needs of providers who deliver prevention and care services. this section of the report offers an overview of each CARE Act program. Additional information is available on the web, at www.hab.hrsa.gov.

The Basics

• Eligible metropolitan areas (EMAs) are defined as those with more than 2,000 reported AIDS cases in the past 5 years and a population of at least 500,000.
• the Number of EMAs tripled from 16 in 1991 to 51 in 2004.
• There are EMAs in 22 States, Puerto Rico, and the District of Columbia.
• Each EMA establishes a Planning Council to assess local needs, set priorities, and develop a comprehensive plan for providing services.

Most AIDS cases continue to be reported in large metropolitan regions, which must build comprehensive systems of HIV/AIDS care and services to reach the scores of underserved individuals in their jurisdictions.

Title I of the CARE Act provides resources to metropolitan areas most severely affected by HIV/AIDS. Regions eligible for assistance under Title I are called Eligible Metropolitan Areas, or EMAs, defined as those with

• a population of at least 500,000 and
• at least 2,000 reported AIDS cases in the previous 5 years.

The number of EMAs has grown from 16 in 1991 to 51 in 2004. EMAs are found in 22 States, Puerto Rico, and the District of Columbia.

Funding

Title I grants are awarded in two parts. The “formula” portion is based on the estimated number of living AIDS cases in the EMA over the most recent 10-year period. The second, or “supplemental,” portion is based on a variety of factors, including the severity of need in the EMA.

Services

Title I funds are used to fill gaps in the continuum of medical and essential social services for underserved people living with HIV disease in EMAs. The range of services includes

• primary care services, including disease prevention and referrals to specialty care;
• medications;
• substance abuse and mental health treatment;
• case management; and
• support services—from nutritional counseling to emergency housing assistance—that enhance the benefit of health services and help people stay in care over time.

Local service providers receive CARE Act Title I funding following a rigorous application process. Funded local providers typically include health clinics, community-based organizations, and social services agencies.

Using Title I Resources: HIV Services Planning Councils

The Title I program is, at its heart, a local endeavor. Within broad Federal guidelines, communities are empowered to address shortages in services for the underserved in their areas. Each EMA is charged with establishing a Planning Council, which is responsible for setting spending priorities according to local unmet needs.

Planning Council members are experts from a variety of fields, such as mental health, public health, and HIV specialty care, and at least 33 percent of the members must be people living with HIV disease who receive CARE Act services. Each council is required to develop a comprehensive plan for providing services, including ways to identify HIV-positive persons not in care.

Administration

Title I funds are awarded to large metropolitan regions consisting of multiple counties and, in some cases, several States. Funds are awarded to the local government serving the greatest number of people living with AIDS in the EMA. For example, in the Philadelphia EMA, which covers nine counties and parts of two States, funds are administered by the City of Philadelphia Department of Health.

The Basics

ADAP

• Grants are made to States and Territories for purchasing medications, adherence support services, and health insurance with a prescription drug benefit.
• ADAP is the largest CARE Act program.
• Each State or Territory establishes its own enrollment criteria and drug formularies.

Care Grants to States and territories

• Grants support a range of care and essential support services.
• Grants are awarded using a formula based on reported AIDS cases.

Care Grants to Emerging Communities

• Communities with 500 to 1,999 reported AIDS cases in the previous 5 years are eligible.
• Eligible communities are segmented into two tiers:
  —Tier 1: Cities with 1,000–1,999 reported AIDS cases (4 cities in FY 2004)
  —Tier 2: Cities with 500–999 reported AIDS cases (25 cities in FY 2004).

Title II of the CARE Act authorizes emergency resources for States, Territories, and emerging communities (those reporting between 500 and 1,999 AIDS cases over the most recent 5-year period). Title II includes three primary initiatives:

• AIDS Drug Assistance Program (ADAP)
• Care grants for States and Territories
• Care grants for Emerging Communities

AIDS Drug Assistance Program

Given the high cost of medications for treating HIV/AIDS and the growing number of underinsured people living with the disease, it is no surprise that ADAP is the single largest CARE Act activity. ADAP funds may be used to purchase medications, subsidize health insurance coverage with a prescription drug benefit, or provide treatment adherence support services. Nationally, more than 80 percent of ADAP clients have incomes at 200 percent or less of the Federal Poverty Level.

Every State and Territory is charged with establishing its own ADAP, each with its own eligibility criteria and drug formulary. Some ADAP formularies have more than 200 medications, and some provide only a few. ADAP reaches approximately 90,000 people in any given month and 136,000 in any given year, but the need for ADAP services has outstripped available resources—and demand continues to grow. As a result, some ADAPs must make enrollment criteria more stringent and drug formularies more restrictive. Some have established waiting lists for new enrollees.

In FY 2004, $748.9 million was designated for ADAP in the Federal budget. Total ADAP funds typically exceed Federal budget allocations, however, because Title I EMAs as well as States and Territories receiving care grants under Title II (see below), may contribute a portion of their awards to ADAP.

ADAP awards to States and Territories are calculated using a formula based on AIDS prevalence. Three percent of the ADAP appropriation is reserved for supplemental grants to States and Territories with a severe need for drug assistance.

Care Grants to States and Territories

Care grants provide resources to fund a range of primary care and support services. Grants are awarded to the 50 States, the District of Columbia, Puerto Rico, Guam, and the U.S. Virgin Islands. In addition, grants of $50,000 are awarded to American Samoa, the Northern Mariana Islands, the Republic of the Marshall Islands, the Federated States of Micronesia, and the Republic of Palau.

Grantees have considerable latitude in deciding which services to fund. Services eligible for funding under Title II include

• primary health care and home-based health care;
• insurance coverage;
• medications;
• support services, such as nutritional counseling and emergency transportation assistance;
• outreach to people with HIV who know their HIV status; and
• early intervention services, such as HIV counseling, testing, and referral.

Grants are awarded using a formula based on reported AIDS cases. Most States provide some services directly through AIDSservice organizations and HIV consortia, which are associations of providers that plan, develop, and deliver services.

Emerging Communities

The CARE Act amendments of 2000 established a program for providing supplemental grants to States with Emerging Communities, that is, cities with between 500 and 1,999 reported AIDS cases in the most recent 5-year period. The legislation segments these communities into two tiers. Tier 1 consists of cities with 1,000 to 1,999 reported AIDS cases (4 cities in FY 2004); Tier 2 consists of cities with 500 to 999 cases (25 cities in FY 2004).

Funding for the Emerging Communities program is $10 million for FY 2004, which, as required in the legislation, is divided equally between the two tiers.

Mike Atchley, Ardmore, OK

The Basics

• 98 percent of funds are for EARLY INTERVENTION SERVICES (EIS) grants, awarded directly to providers.
• other Grants are for planning and capacity building.
• In FY 2003, 363 organizations received EIS grants, 39 received capacity-building grants, and 6 received planning grants.

Early Intervention Services

Title III early intervention services (EIS) grants fund outpatient medical services for HIV-positive individuals in underserved communities. EIS grants totaled $183 million in FY 2003 and accounted for 98 percent of all Title III grant funds; 363 organizations received awards.

Almost all Title III EIS grantees are in communities where they are the only EIS provider accessible to uninsured and under-insured individuals. The typical Title III EIS provider uses approximately 75 percent of its award for comprehensive primary care services, which include HIV counseling and testing, onsite primary care, specialty care (both onsite and by referral), and adherence support. Providers also fund case management and other essential services.

Title III grants are awarded directly to primary care providers, rather than to cities (as in Title I) or to States and Territories (as in Title II). Grantees include, among others,

• federally funded community and migrant health centers,
• other health centers,
• city and county health departments, and
• outpatient university and hospital medical centers.

Many Title III providers are in communities of color and in rural areas, where HIV medical resources typically are scarce.

Capacity development

Title III also funds grants for strengthening organizational infrastructure and bolstering the capacity to develop, manage, and evaluate HIV service delivery systems. Capacity development grants are used for

• identifying, establishing, and improving clinical, administrative, managerial, and management information systems;
• developing financial management units;
• purchasing clinical supplies and equipment;
• developing organizational strategic plans for HIV care; and
• educating board members and staff.

Capacity-building grants can cover up to a 3-year period and total $150,000. For FY 2003, 39 capacity-building grants were awarded, totaling $2.3 million.

Planning

Title III planning grants are 1-year awards to help organizations plan for providing EIS in the future. Activities include building relationships with key stakeholders and potential collaborators and forming programmatic linkages and referral networks within the community—especially with medical specialists and providers of social services. Planning grants also can be used to help organizations conduct comprehensive needs assessments and apply for operational grants.

Six $50,000 awards were made in FY 2003, for a total of $300,000.

Dan Driggers (deceased), Cindy White, and son Jake, Omaha, NE

The Basics

• Funding targets women, infants, children, youth, and their families.
• In FY 2003, 89 grants were awarded: 73 to organizations serving all Title IV target populations; and 16 to those specifically serving young people.
• Grantees provide family-centered care, stressing the importance of co-located, coordinated services for the entire family.

HIV strikes disproportionately among people who live in poverty and lack access to health and social services. This is especially true for the populations targeted by the CARE Act’s Title IV program: HIV-positive women, infants, children, youth, and their affected family members.

For FY 2003, 89 grants were awarded through the Title IV program. (FY 2004 awards will be made in August 2004.) Of these awards

• 73 grants totaling $58.5 million were awarded to organizations serving all Title IV target populations and
• 16 grants totaling $5.9 million were part of the Title IV Youth Initiative and were awarded to organizations addressing the unique barriers to care faced by HIV-positive youth.

The target populations served by the CARE Act Title IV program must overcome many interrelated challenges in addition to HIV/AIDS. Most common are poverty and the issues that go with it, such as poor housing, lack of transportation and child care; non-HIV-related illnesses; and the absence of a social support system. Those challenges can be intensified by any one of several circumstances—for example, when there is more than one HIV-positive person in a single family or when, as is often the case, an HIV-positive person is the primary caregiver for a child or relative.

Experience shows that a comprehensive and coordinated service approach is essential for delivering HIV treatment to women, infants, children, youth, and their affected family members. Title IV grantees build a comprehensive care system for their clients, coordinating what would otherwise be a disjointed array of providers and services. In doing so, Title IV clients are given access to

• primary care and HIV specialty care for HIV-positive clients;
• supportive care for caregivers of HIV-positive women, infants, children, and youth;
• neonatal and pediatric specialty care;
• substance abuse and mental health services;
• case management;
• essential support services, such as transportation, child care, and housing assistance;
• coordination of all services for the entire family; and
• education and access to clinical trials and clinical research.

Preventing Mother-to-Child Transmission of HIV

Although new HIV infections among newborns have dropped significantly since the introduction of AZT-based regimens, mother-to-child transmission of HIV continues to occur—most often in poor, medically underserved families. The Title IV program has supported special initiatives to help identify HIV-positive pregnant women and ensure that they have access to care that can improve their health and prevent perinatal transmission.

The Basics

• 11 regional Centers and 130 associated sites provide clinical training in cities and towns across the nation.
• Four national Centers serve providers nationwide.
• AETCs are Instrumental in continuing the education of clinicians in one of medicine ’s most rapidly advancing fields.

The evolution of the HIV epidemic and changes in medical care for HIV-infected people in the United States continue to present challenges and opportunities for the AIDS Education and Training Center (AETC) program. Several trends are particularly relevant:

• The increasing impact of HIV/AIDS on the underserved, minority, and marginalized segments of American society
• The dramatic impact of medical care, particularly the use of highly active antiretroviral therapy (HAART) on health outcomes of people living with HIV infection, with the best outcomes associated with the highest quality care
• Evidence that many HIV-infected individuals in this country are not receiving regular medical care
• Increased emphasis on reducing transmission by HIV-infected persons.

Additionally, the AETC program has received a considerable proportion of its funding in recent years through the Minority AIDS Initiative, the mandate of which is to increase capacity for HIV/AIDS care and services in communities of color.

The AETC program is the clinical training component of the CARE Act. It provides ongoing education to clinicians in rural, suburban, and urban areas across the country. Eleven regional centers and 130 associated local performance sites provide ongoing clinical training and technical assistance to health care providers serving people living with HIV disease.

Like other CARE Act programs, regional AETCs base their activities on local needs, continually assessing and revising their efforts to serve people living with HIV/AIDS and the clinicians who treat them. The program targets providers who treat minority, underserved, and vulnerable populations in the communities most affected by the HIV epidemic and providers who are primarily associated with Ryan White CARE Act–supported organizations.

The clinical management of HIV/AIDS, particularly the use of HAART, is the central focus of training. Innovative training methods—skill-building workshops and clinical practice placements—augment traditional didactic education. AETCs also provide clinical consultation and decision support to clinicians regarding care and the use of HAART and technical assistance in improving service delivery at the organizational level.

The term “innovative” connotes the adoption of approaches in venues that are not likely to be supported by private-sector (i.e., pharmaceutical and other) interests without AETC support. The goal is to increase the number of providers who are educated and motivated to counsel, diagnose, and treat people living with HIV disease. From July 1, 2002, to June 30, 2003, the AETCs provided training to 62,032 clinicians.

In addition to regional endeavors, the AETC program operates on a national level:

• The National Minority AETC (www.nmaetc.org) was established with funding from the Minority AIDSInitiative to increase HIV/AIDS clinical expertise in underserved communities of color.
• The National HIV/AIDS Clinical Consultation Center (www.ucsf.edu/hivcntr) provides timely responses to clinical treatment questions through the “WarmLine” (800-933-3413). The Center’s “PEPLine” addresses questions related to possible health care worker exposure to HIV and other blood-borne pathogens (888-448-4911). A perinatal hotline is in development.
• The AETC National Resource Center (www.aids-ed.org) is a Web-based resource for rapid dissemination of time-sensitive developments, such as new treatment advances, changes in treatment guidelines, and posting and dissemination of training curricula.
• The National Evaluation Center monitors the effectiveness of AETC education, training, and consultation activities.

The AETC program is the largest comprehensive education program in the United States dedicated to improving HIV care for the underserved populations affected by HIV/AIDS. Together, the centers provide training, clinical consultation, technical assistance, training resources, and evaluation services. Trainees include physicians, physician assistants, nurses, nurse practitioners, oral health practitioners, pharmacists, and clinical school faculty. Trainees come from public and private treatment institutions, community-based organizations, and other CARE Act–supported institutions.

Brenda Wise, New York, NY

The Basics

• Oral health problems occur in 30 to 80 percent of people living with HIV/aids.
• The dental reimbursement program provided $9.8 million in reimbursements to 64 institutions in FY 2003.

   

The community-based dental partnership program provides 5-year grants to dental education programs. $2.9 million in grants was awarded to 12 institutions in fy 2002 and 2003. due to budget restrictions, no new grants were awarded in fy 2003 or 2004.

People living with HIV disease often experience oral health problems. Conditions like thrush, warts, and gum disease are often among the first manifestations of HIV disease, and they occur in 30 percent to 80 percent of people living with HIV/AIDS worldwide.

Oral health care is essential for the HIV-positive person because of its relationship to good nutrition. Ongoing dental care and treatment are critical to minimizing long-term dental complications.

The CARE Act’s Dental Reimbursement Program improves access to oral health care for people living with HIV disease. The program provides reimbursements to dental schools, hospitals, and other institutions with dental education programs for otherwise uncompensated services provided to people living with HIV/AIDS.

By offsetting the costs of HIV care in dental education institutions, the Dental Reimbursement Program achieves two fundamental objectives:

• expanded access to oral health care for people living with HIV/AIDS and
• improved training for new dentists and dental hygienists on caring for people living with HIV disease.

Services covered by the Dental Reimbursement Program include diagnostic and preventive care; oral health education and health promotion; restorative, periodontal, prosthodontic, and endodontic services; oral surgery; and oral medicine services.

In FY 2003, the Dental Reimbursement Program provided $9.8 million in reimbursements to 64 institutions in 23 States and the District of Columbia and Puerto Rico.

Community-Based Dental Partnership grants
Community-Based Dental Partnership grants provide funds to eligible dental education programs to increase access to oral health services and enhance provider training in community settings. The grants are designed to provide care, under the supervision of dentists and in community-based settings, while supporting, educating, and training students and residents enrolled in accredited dental education programs.

Funded activities include

• provision of oral health services for people with HIV/AIDS;
• clinical rotations for students and residents in community-based settings; and
• data collection, management, and reporting.

In FY 2003, a total of $2.9 million in funding to 12 institutions was provided through the program.

The Basics

• n spns grants provide funding for improved models of care delivery that are replicable in the provider community.
  n 72 grants in 17 initiatives are under way.
  n Initiatives focus on discrete care challenges, including adherence, buprenorphine in the HIV care setting, and prevention with positives.
  n Total annual funding is
  $25 Million.

It is estimated that as many as one-third of all those living with HIV/AIDS in the United States do not know it. Many others are aware of their serostatus but are not in care. The Nation must develop increasingly effective programs for reaching infected individuals if it is to stem the tide of the epidemic and mitigate the effects of HIV disease. It is for this reason that the CARE Act’s Special Projects of National Significance (SPNS) program was established.

SPNS Initiatives
The SPNS program supports the development, evaluation, and replication of innovative models of HIV care and services delivery. For the majority of its endeavors, the SPNS program establishes initiatives that focus on key issues in HIV care. Current and past initiatives seek more effective and efficient service delivery models related to HIV/AIDS and

• integrating buprenorphine and substance abuse treatment in HIV primary care settings,
• MSM of color,
• adherence,
• services along the U.S./Mexico border,
• outreach and intervention,
• information technology,
• care in Caribbean populations,
• prevention strategies for HIV-positive persons,
• correctional settings,
• services for American Indians and Alaska Natives with HIV, and
• substance abuse and HIV treatment.

SPNS Grants

SPNS grants are awarded within the context of each initiative. Each year, SPNS funds about $25 million in grants. There are currently 72 grants in 11 initiatives.11 Some, such as the HIV Prevention, Intervention, and Continuity of Care Within Correctional Settings and the Community initiative, are funded in collaboration with the Centers for Disease Control and Prevention. Grants—averaging about $350,000 each—are awarded competitively and last 3 to 5 years. Grantees include

• university clinics (29%),
• community clinics (26%),
• evaluation centers (17%),
• local/State health departments (15%),
• community-based organizations (7%),
• miscellaneous and nonprofit agencies (6%).

Jonathan Nagy, New York, NY

Dissemination of SPNS Findings

Most recipients of SPNS grants provide services to underserved individuals during the course of the project. But the goal of SPNS is to identify more effective models of service delivery that can then be disseminated throughout the care community. This goal is accomplished through several mechanisms. Each SPNS grantee develops and implements a dissemination plan, which typically involves submitting articles to leading periodicals, such as the Journal of Acquired Immune Deficiency Syndrome or the American Journal of Public Health. In addition to disseminating findings through peer-reviewed journals, monographs, and the HAB Web site (www.hab.hrsa.gov), grantees make presentations at local, national, and international conferences that highlight findings from their projects.

Simultaneously, HRSA implements its own dissemination strategy, which includes the development of white papers and publications summarizing key findings from SPNS initiatives. In addition, SPNS outcomes are regularly featured in the HRSA/HAB publication HRSA CAREAction, and HRSA staff make presentations at conferences. In August 2003, findings from the SPNS Adolescent Initiative were the focus of a special issue of the Journal of Adolescent Health.

The HIV/AIDS Bureau improves the health and quality of life of people living with HIV/AIDS by increasing the effectiveness and efficiency of CARE Act programs.

Through technical assistance and training initiatives mandated in the legislation, the HIV/AIDSBureau helps grantees and providers respond more effectively to local care needs. For example, the AETCprogram described on page 42 of this report provides clinical care training to thousands of clinicians across the country each year. Through activities such as nationwide conference calls and resources such as the CARE Act Technical Information and Education library (www.hab.hrsa.gov/Catie/), individuals gain access to practical tools for addressing care and service delivery challenges.

In a time of rising health care costs, increasing HIV prevalence, and a growing Federal budget deficit, CARE Act–funded entities, now more than ever, must clearly demonstrate effectiveness, efficiency, and positive return on taxpayer dollars. Cross-program activities, such as the new CARE Act Data Report, targeted studies of CARE Act programs, and partnership programs with other Federal agencies that address such systemic challenges as projecting the cost of health care, are helping the Bureau create a more productive and efficient HIV/AIDS care environment.

Critical to improving program performance is HRSA’s comprehensive approach to quality, described at www.hrsa.gov/quality. CARE Act grantees are mandated to implement quality management programs, and the Bureau provides several publications and tools to help organizations fulfill this requirement. For example, the Bureau’s Quality Management Technical Assistance Manual gives providers real-world quality improvement techniques that lead to measurable improvements in the quality of CARE Act services (www.hab.hrsa.gov/tools/QM).

"Ulises," Chicago, IL

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