1. Overview of the Ryan White CARE Act
Overview of the Ryan White CARE Act
The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act is Federal legislation that addresses the unmet health needs of persons living with HIV disease (PLWH) by funding primary health care and support services that enhance access to and retention in care. First enacted by Congress in 1990, it was amended and reauthorized in 1996 and again in 2000.
Like many health problems, HIV disease disproportionately strikes people in poverty, racial/ethnic populations, and others who are underserved by healthcare and prevention systems. HIV often leads to poverty due to costly healthcare or an inability to work that is often accompanied by a loss of employer-related health insurance. CARE Act-funded programs are the “payer of last resort.” They fill gaps in care not covered by other resources. Most likely users of CARE Act services include people with no other source of healthcare and those with Medicaid or private insurance whose care needs are not being met.
CARE Act services are intended to reduce the use of more costly inpatient care, increase access to care for underserved populations, and improve the quality of life for those affected by the epidemic. The CARE Act works toward these goals by funding local and State programs that provide primary medical care and support services; healthcare provider training; and technical assistance to help funded programs address implementation and emerging HIV care issues.
The CARE Act provides for significant local and State control of HIV/AIDS healthcare planning and service delivery. This has led to many innovative and practical approaches to the delivery of care for PLWH.
The CARE Act is the largest Federal government program specifically designed to provide services for PLWH. Its funding has grown along with the number of HIV/AIDS cases and treatment costs.
CARE Act Funding
The Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB) has lead responsibility for implementing the CARE Act. HRSA is an agency of the U.S. Department of Health and Human Services (HHS). CARE Act programs include:
Title I eligible metropolitan areas (EMAs) are urban areas hardest hit by the HIV/AIDS epidemic. EMAs may use funds for HIV/AIDS primary care and support services that enhance access to and retention in primary care. Funds may also be used for early intervention services to move PLWH into care. Grants are awarded to local governments. They, in turn, award funds to providers based on service priorities established by the Title I planning council that is convened by the EMA to carry out HIV/AIDS planning. Supplemental awards are based in part on the EMA’s ability to document severe need for additional funding and the capacity to meet that need.
States and territories are funded under Title II to improve access to primary care and support services that enhance access to and retention in primary care. Funds may also be used for early intervention services to move PLWH into care. States have program flexibility to ensure a basic standard of care across their diverse service areas. They may support five different programs:
Public and private nonprofit primary care providers receive grants for outpatient early intervention services (i.e., comprehensive primary health care and other services, including HIV counseling, testing, and referral). The Amendments of 2000 established Title III capacity development and planning grants that prepare agencies to provide early intervention services.
Funds go to public and private nonprofit entities to coordinate services for infants, children, youth, women, and families and to provide them medical care, support services, and access to research.
Funds go to public and private nonprofit entities to develop innovative models of HIV/AIDS care, including projects targeting Native American/Alaskan Native populations.
Funds go to dental schools and dental hygiene programs, and community-based providers collaborating with them, to help cover the uncompensated costs of providing oral health care to PLWH.
Funds go to a network of regional and national entities to conduct multi-disciplinary HIV-related education and training for health care providers. The goal is to increase the number of trained HIV providers and to help prevent HIV transmission. AETCs also disseminate treatment information to health care providers and patients.
The HIV/AIDS Bureau’s (HAB) CARE Act programs are administered as follows:
Focus of Addition or Change
|Estimating Unmet Need||Planning councils must estimate unmet need as part of the needs assessment process|
Planning council must “determine the size and demographics of the population of individuals with HIV disease” and then “determine the needs of such population, with particular attention to—
|Section VIII, Program Guidance, Chapter 1, Needs Assessment|
|HAB/DSS will assist grantees in estimating unmet need||HAB/DSS and grantees are to work together to develop epidemiologic measures “for establishing the number of individuals living with HIV disease who are not receiving HIV-related health services”|
|Comprehensive Plan||Plan must include a strategy for getting people into care||Plan must include “a strategy for identifying individuals who know their HIV status and are not receiving such services and for informing the individuals of and enabling the individuals to utilize the services, giving particular attention to eliminating disparities in access and services among affected subpopulations and historically underserved communities”|
Section VIII, Program Guidance, Chapter 2, Comprehensive Planning
Section VI, Planning Bodies, Chapter 1, Planning Body Duties
|Plan must provide for coordination with prevention and substance abuse prevention and treatment||Plan must include “a strategy to coordinate the provision of such services with programs for HIV prevention (including outreach and early intervention) and for the prevention and treatment of substance abuse (including programs that provide comprehensive treatment services for such abuse)”|
|Planning council must consider capacity development needs||Council must respond to “the capacity development needs resulting from disparities in the availability of HIV-related services in historically underserved communities.”|
|Plan must be compatible with other HIV plans||Council’s plan must be “compatible with any State or local plan for the provision of services to individuals with HIV disease,” particularly the SCSN|
|Getting HIV-positive people who know their status into care||Outreach services receive increased emphasis||Title II funds may be used for “outreach activities that are intended to identify individuals with HIV disease who know their HIV status and are not receiving HIV-related services”—in order to get them into care.||Section VIII, Program Guidance, Chapter 5, Early Intervention Services|
|Title II funds may now be used to fund Early Intervention Services (EIS)||Title II funds may now be used for EIS, if the grantee demonstrates (a) unmet need for these services, and (b) that other sources of funds are insufficient to respond.|
|Relationships must be developed with entities that serve as “Points of Entry” to care||Providers receiving Title II funds must maintain “appropriate relationships with entities that constitute key points of access to the health care system.” Points of access include: emergency rooms, substance abuse treatment programs, detoxification centers, adult and juvenile detention facilities, sexually transmitted disease clinics, HIV counseling and testing sites, mental health programs, and homeless shelters, among other entities.|
|Emphasis on primary care||Support services must now be linked to primary care||Support services should “facilitate, enhance, support, or sustain the delivery, continuity, or benefits of health services for individuals and families with HIV disease.”||Section VIII, Program Guidance, Chapter 4, Quality Management|
|Ensuring the quality of care||Quality management programs must be established||Section VIII, Program Guidance, Chapter 4, Quality Management|
|Planning||Planning boides must consult with the same type of entities required to be represented on Title I planning councils||Health care providers, CBOs and ASOs, social service providers including providers of housing and homeless services, mental health and substance abuse providers, local public health agencies, hospital planning agencies or health care planning agencies, affected communities including PLWH and historically underserved groups and subpopulations, nonelected community leaders, other State agencies such as Medicaid, Title III and Title IV grantees including HIV prevention services, and representatives of individuals who formerly were Federal, State, or local prisoners||Section VI, Planning Bodies|
|Public advisory process||The State must engage in a public advisory process including public hearings that includes individuals with HIV disease, representatives of Title II providers, and public agency representatives||Section VI, Planning Bodies|
|Services for women, infants, children, and youth||Funding allocations are specified for health and support services for infants, children, youth, and women with HIV disease||Each EMA must allocate funds for each group in an amount no less than the proportion that each is represented in the total AIDS cases in the EMA.||Section VIII, Program Guidance|
|Funding based on HIV cases as well as AIDS cases||Title II grants may be based on data on cases of HIV disease (i.e., reported AIDS cases and HIV-infections that have not yet progressed to AIDS) rather than AIDS cases if data are sufficient for doing so.||As of FY 2005, formula grants are to be awarded based on cases of HIV disease rather than AIDS cases if the Secretary of Health and Human Services has determined that HIV surveillance data are adequate for doing so. An Institute of Medicine Study will address this issue, and the Centers for Disease Control and Prevention will confirm the reliability of such data. If data are not sufficient by FY 2005, their adequacy will be reconsidered for FY 2006. HIV prevalence data will in any case be used for making awards for FY 2007.||Section I, Overview of the CARE Act|