January 2002      

HRSA Care ACTION

Implementing the CARE Act Amendments of 2000

The new CARE Act promises improved health and quality of life for hundreds of thousands of people living with HIV disease.  A bounty of new provisions and changes in the legislation reflect experience and knowledge that have been attained over the course of the epidemic in the United States. The adaptations constitute improvements in the legislation and make it at once more effective, more efficient, and more responsive to the needs of people living with HIV disease than it ever has been.

This article provides an update on the implementation of some of the more far-reaching CARE Act amendments, which may be broadly categorized into six goal-oriented themes: access to care, quality of services, capacity development, targeting resources to specific populations, linkages across the care and prevention spectrum, and coordination with Federal agencies.

Many of the provisions enacted by Congress enhance the availability of services. Modifications to existing programs are aimed at enhancing the care infrastructure and broadening the reach of the CARE Act into underserved communities. A variety of other program-specific changes are intended to ensure adequate representation of people affected by the disease in the health planning process, ensure that necessary services are funded and provided in a coordinated manner, address concerns of grantee organizations, and enhance the efficiency of the award process. All the changes are being implemented by the HIV/AIDS Bureau in concert with grantees and other agencies to ensure that the intent of the legislation is realized in the lives of people in communities of all sizes, from cities to rural areas, across the United States and its Territories.

The new funding opportunities authorized in the CARE Act Amendments of 2000 already are enhancing the nation's response to the AIDS epidemic.

Many metropolitan regions across the country are affected by a significant number of AIDS cases, yet they do not meet criteria for Eligible Metropolitan Area status (i.e., 2,000 AIDS cases over the past 5 years and a population of at least 500,000). Many of those communities lack the resources to fill gaps in services.

A new supplemental formula grant program responds to the needs of those communities. The legislation stipulates that in the first year in which the Title II appropriation (excluding the ADAP "earmark") is at least $20 million over the FY 2000 level, at least 50 percent of the increase is to be used for Emerging Community Grants. In FY 2001, the increase was $21 million; thus, $11 million was available for this new grant program.

The legislation requires that cities with between 500 and 999 reported AIDS cases over the most recent 5-year period collectively receive half of those funds; cities with between 1,000 and 1,999 cases receive the other half. For FY 2001, a total of 39 communities received emerging community status: 32 in the first group, and 7 in the second.  The funds are awarded through the Title II program: States and Territories actually receive the funds, which are then disbursed in emerging communities after a local planning process.

In August 2001, supplemental ADAP grants were awarded for the first time to 14 States and Territories demonstrating severe need:

The reauthorized CARE Act stipulates that 3 percent of the ADAP earmark is now to be reserved for these grants, which will help States and Territories expand their formularies, target resources to reflect the changing epidemic, and remove eligibility restrictions for consumers. Applicants are required to demonstrate at least one of the following:

Financial eligibility requirements of less than or equal to 200 percent of the Federal poverty line

Medical eligibility restrictions 

Limited inclusion of antiretroviral medications in their drug formularies

Formularies with fewer than 10 medications for the treatment of opportunistic infections.

A total of $17.7 million was distributed to the 14 grantees in FY 2001.

New provisions in the legislation created capacity building grants under Title III of the CARE Act. The legislation mandates that priority be given to organizations serving rural and underserved communities when making the grants, which may total up to $150,000 per organization over a 3-year period.

As a result of this new provision, 48 grants totaling $4.39 million were awarded in 20 States, along with the District of Columbia and Puerto Rico, in September 2001. Eighteen of the grantees are non-federally funded health centers; 13 are hospitals or university health centers; 7 are federally funded health centers; 7 are community based organizations (not clinics); 2 are public health departments; and 1 is a coalition of organizations. Of the grantees, 37 applied as organizations that already serve or intend to serve communities of color, and 11 applied as organizations that now serve or will in the future serve rural and other underserved communities.

One of the most far-reaching changes in the legislation allows funding for early intervention services (EIS) through Titles I and II. The provision is just one of several that highlight the relationship between prevention and care and between counseling and testing, and HIV/AIDS specialty care.

Specifically, Title I and II funds may now be used for HIV outreach, and counseling and testing services. The Amendments of 2000 state that the purpose of such expenditures through Title I and II is to increase access to care for people who are HIV positive but who either do not know their serostatus or are aware that they are HIV positive yet remain out of care. Thus, outreach activities are to target HIV-positive individuals. Policies regarding specific uses of funds for outreach are currently under development. (For indepth information regarding EIS and Titles I and II, see the July issue of this publication, available on the HAB Web site.)

Today, AIDS morbidity and mortality are related to the clinical expertise of providers and to the availability of quality care and services. Cognizant of this fact, Congress enacted provisions requiring the evaluation of the quality of services delivered and the development and implementation of quality control or quality management programs.

The new legislation requires implementation of quality management programs at the Federal, grantee, and service provider levels. The intent of such programs is to help providers of clinical care ensure that

funded services adhere to established HIV clinical practices and Public Health Service guidelines;

strategies for improvements to quality medical care include delivery of health-related support services that are vital for achieving appropriate access to care and adherence to treatment; and

demographic, clinical, and health care utilization information is used to monitor the spectrum of HIVrelated illnesses and trends in the local epidemic.

To support implementation of those provisions, HAB has convened a workgroup and is developing a Bureau-wide strategy and program-specific initiatives to address quality of care issues. In addition, all grantees have received instructions regarding quality management requirements. Many grantees already have quality management initiatives in place; for those who do not or who seek to improve their existing programs, technical assistance materials have been developed (see the HAB Web site). For additional information about technical assistance, grantees should contact their project officer.

HIV-positive women tend to enter care later in stage of disease than men do, and many learn of their serostatus only after seeking prenatal care during the second trimester of pregnancy. Moreover, data show that women are less likely to receive highly active antiretroviral therapy. Finally, the clinical manifestations of HIV disease in women differ from those among men. 

In response to those challenges, HAB has published A Guide to the Clinical Care of Women with HIV. The text has been widely disseminated, first at the 12th International Conference on AIDS in Durban, South Africa, and more recently through several meetings and events in the United States. Free copies are available through the HRSA Information Center (1-888-ASK-HRSA). 

Changes in the legislation require that Title I and II funds be expended for services to women, children, and youth in proportion to their representation in the local epidemic. This requirement has been implemented and was being met by many grantees prior to reauthorization.

A new provision calls for Title I Planning Councils to include people representing disproportionately affected communities including:

Providers of housing and homeless services

Grantees under other Federal HIV programs

Representatives of individuals who formerly were Federal, State, or local prisoners; were released from the custody of the penal system during the preceding 3 years; and had HIV disease on the date on which they were released.

The intent of this provision is to ensure that the needs of the people most affected by the epidemic are heard and that resources are allocated to address their needs. HAB has already provided direction to Title I grantees for expanding Planning Councils to include representatives of the populations identified in the Amendments.

Instructions also have been provided to grantees for increasing consumer participation on Planning Councils to 33 percent.  The legislation further defines such people as those who

receive HIV-related services from Title I funded providers;

are not officers, employees, or consultants to any providers receiving Title I funds and do not represent any such entities; and

reflect the demographics of the HIV-positive population in the EMA.

Planning Councils must comply with the provisions by March 1, 2002. HAB has distributed various support materials regarding both this issue and matters involving Planning Council chairs, open meetings, and ensuring a productive planning process. For copies of instructions provided to grantees, go to "DSS Letters" at http://hab.hrsa.gov/reauthindex.html.

HIV Prevalence as a Basis for Making Formula Grants

A new CARE Act provision requires an evaluation of using HIV prevalence data, rather than AIDS prevalence data, as a possible basis for establishing formula grants.

The legislation requires that the Institute of Medicine (IOM) evaluate whether State HIV surveillance systems provide adequate and reliable information on the number and demographic characteristics of HIV cases (both at the State level and for specific geographic areas within States) and whether HIV case reports are sufficiently accurate for purposes of awarding formula-based grants under Titles I and II. If the study identifies HIV prevalence as a valid measure of disease prevalence, HAB will award formula grants on that basis, as opposed to basing the formula primarily on AIDS prevalence. The new approach to awarding grants will begin in FY 2005, pending the outcome of the research.

Congress directed HAB to examine opportunities for interagency and interdepartmental initiatives aimed at pooling resources, reducing fragmentation, and enhancing coordination. HAB has developed a number of interagency agreements with the Center for Medicare and Medicaid Services, the Centers for Disease Control and Prevention, the Department of Veterans Affairs, and the Bureau of Prisons to enhance coordination of research efforts, funding mechanisms, and service delivery.

Other provisions of the Amendments to the CARE Act call for simplification of the awards process and coordination of funding cycles. HAB has taken a proactive, consensus building approach toward the implementation of those provisions. On October 29, 2001, HAB called a meeting of its Title I and II program grantees to help design and develop new mechanisms for administering the Title I and II program grants. The grantees provided input into methods of simplifying and streamlining the application process and formed workgroups to provide recommendations on how to make the process less burdensome for grantees without sacrificing quality. Title I and II representatives are currently working with grantees to develop a system that will meet the needs of both the Bureau and the grantees. For the latest information on this process, Title I and II grantees should contact their project officer.

The results of the amended CARE Act will be seen in the lives of people living with HIV disease, in the lives of their families, and in the lives of their communities. Because of some provisions and programs, people who otherwise never would have received care will receive it. Because of other changes, resources will be used where they can do the most good. The result? A mother will raise a child. A son will grow into middle age. The miracle of everyday life will be played out in people who, without the CARE Act, would face prospects as though it were 1981, not 2001. 

A copy of the CARE Act Amendments in their entirety can be downloaded from the HAB Web site, http://hab.hrsa.gov/reauthindex.html.  The Amendments were reviewed in the November 2000 issue of this publication, which may be found at the same Web address.

Cooperative Agreements With National Organizations Funded in September 2001

In September 2001, the HIV/AIDS Bureau funded National Training and Technical Assistance Cooperative Agreements with seven national AIDS-related organizations:

AIDS Action Foundation

AIDS Alliance for Children, Youth and Families

National Association of People Living With AIDS (NAPWA)

National Association of State and Territorial AIDS Directors (NASTAD)

National Minority AIDS Council (NMAC)

National Pediatric and Family HIV Resource Center (NPHRC)

Communities Advocating Emergency AIDS Relief (CAERE) Coalition.

These partnerships were first implemented in 1998 with six of the seven organizations listed above. The CAERE Coalition was added for the new 3-year funding cycle that began in September.

The cooperative agreements are designed to implement a variety of initiatives in the following areas:

1. Assess informational needs and develop and offer opportunities for HIV/AIDS training, technical assistance, and leadership development in response to identified needs

2. Identify and promote useful models and best practices for the delivery of high-quality HIV/AIDS-related services

3. Develop and disseminate instructional and informational materials on HIV/AIDS epidemiology, prevention, support, care, and treatment

4. Provide opportunities for increased communication and collaboration among people working with programs funded by the Ryan White C ARE Act and other public and private organizations addressing HIV/AIDS.

AIDS Action Foundation
1906 Sunderland Place, NW
Washington, DC 20036
202-530-8030
http://www.aidsaction.org/ 

AIDS Alliance for Children, Youth and Families
1600 K Street NW, Suite 300
Washington, DC 20006
202-785-3564
http://www.aids-alliance.org/ 

National Alliance of State and Territorial AIDS Directors (NASTAD)
444 North Capitol Street, NW
Suite 339
Washington, DC 20001-1512
202-434-8090
http://www.nastad.org/ 

National Association of People with AIDS (NAPWA)
1413 K Street, NW, Suite 700
Washington, DC 20005-3442
202-898-0414
http://www.napwa.org/ 

National Minority AIDS Council (NMAC)
1931 13th Street, NW
Washington, DC 20009-4432
202-483-6622
http://www.nmac.org/ 

National Pediatric and Family HIV Resource Center (NPHRC)
University of Medicine and Dentistry of New Jersey
FXB Center
30 Bergen Street, ADMC 4
Newark, NJ 07103
973-972-0410
http://www.pedhivaids.org/ 

CAEAR Coalition Foundation, Inc.
1534 16th Street, NW
Washington, DC 20036
202-789-3565
http://www.caear.org/

Each organization develops activities and products related to its area of expertise and the interests of its constituent groups. Previously, a variety of materials have been created under the agreements, such as Passport to Managed Care: A Tool for Making Managed Care Work for You by NAPWA and Youth and HIV/AIDS 2000: A New American Agenda by AIDS Alliance. Technical assistance and capacity building assistance have been provided through NASTAD and NMAC. Sponsored by both HRSA and the Centers for Disease Control and Prevention, AIDS Action developed a resource guide and held a 2-day conference on HIV prevention and care for incarcerated populations. Finally, NPHRC diligently disseminated the most current and scientifically based information on HIV diagnosis, treatment and service delivery for women, infants, children, and youth. 

During the current project period, these seven organizations will assist people who work with CARE Act programs and other publicly funded programs with understanding and putting into action the requirements of the CARE Act as reauthorized in October 2000. Specific activities will include

development of materials to recruit and train new planning council members,
a series of case studies regarding developing estimates of unmet need, and
creation of quality improvement guidelines for both clinical and support services.

For additional information, contact Nancy Kilpatrick, Chief, Technical Assistance Branch, HAB, at 301-443-1484 or nkilpatrick@hrsa.gov.

For more information, call (301) 443-7036

HEALTH RESOURCES AND SERVICES ADMINISTRATION -  HIV/AIDS BUREAU

IN THIS ISSUE
1999 AIDS Drug Assistance Program Data
Insert: Calendar of Events

HRSA Care ACTION
is published by the HIV/AIDS Bureau,
Health Resources and Services Administration,
Department of Health and Human Services.
All information contained
herein is in the public domain.

Please forward comments, letters, and questions to:

HRSA Care ACTION
HIV/AIDS Bureau, HRSA
5600 Fishers Lane, Room 7-13
Rockville, MD 20857

Phone: 301-443-0349
Fax: 301-443-0055
rsoliz@hrsa.gov
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