The Ryan White Care Act:
A Decade of Success in the National Response to the HIV/AIDS Epidemic

Declaring an AIDS emergency, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in August 1990 (Public Law 101-381). Six years later. Congress voted to reauthorize the CARE Act by a unanimous vote in the House of Representatives and a 97-3 vote in the Senate (Public Law 104-146). In 2000, both the Senate and the House voted unanimously to reauthorize the CARE Act.

The CARE Act represents the largest authorization of federal funds specifically designated to provide health and social services to people infected with HIV. Over the last nine years, it has helped increase the availability of primary care health and support services especially for uninsured and under-insured persons with HIV disease. The multi-title structure of the CARE Act has worked effectively to: dramatically improve the quality of life for people living with HIV disease and their families; reduce use of costly inpatient care; and increase access to care for under-served populations, including people of color.

Title II: Grants to all states, the District of Columbia, Puerto Rico and the U.S. territories. Since FY 1996, Congress has included an earmarked amount for the AIDS Drug Assistance Program (ADAP) in the appropriation for Title II.

Title III: Direct funding for public and private nonprofit entities, such as Community and Migrant Health Centers, to support early intervention services for people with HIV.

Title IV: Supports public and private nonprofit entities to provide comprehensive systems of care for children, youth, women, and families including medical care, social services and access to clinical research.

Part F: Special Projects of National Significance (SPNS), the Dental Reimbursement Program, and AIDS Education and Training Centers (AETCs).

• Due to combination anti-retroviral therapies made more widely available through the CARE Act to large numbers of uninsured and under-insured people with HIV/AIDS, the AIDS death rate in 1997 was its lowest in nearly a decade.
• Medical and support services supported by the CARE Act have provided new treatment advances to people with HIV disease. More people are living longer and new patients are seeking CARE Act services.
• The CARE Act serves as the safety net provider for people of color and other under-served groups with little or no access to quality health care.
• The CARE Act reduces expensive inpatient hospitalizations and hospital-based services and decreases the use of medical specialty care.
• The CARE Act enables patients to return to normal functioning, preparing and allowing them to return to work and remain.healthy, productive members of their community.

• As of June 2001, 793,026 AIDS cases had been reported to the Centers for Disease Control and Prevention. The cumulative number of AIDS deaths was 457,667.
• AIDS is the leading cause of death among African American men and he third leading cause of death among African American women between the ages of 25 and 44. AIDS is the fifth leading cause of death among all Americans in this age group.
• The dramatic decreases in HIV- and AIDS-related mortality are the result of our nation’s federal investment in HIV/AIDS prevention, care, treatment, and research. Nevertheless, more than 40,000 individuals in the U.S. will be infected with HIV in 2002 and no evidence suggests that this number is declining.
• According to the CDC, between 800,000 and 900,000 Americans are infected with HIV.
• More women in the U.S. than ever have AIDS. AIDS cases among women increased 60 percent in the first half of this decade and women now account for 20 percent of the AIDS caseload.
• In 2000, 54% of those newly diagnosed with HIV were African American and 19% were Latino. African American males comprised the greatest number of new infections in 2000.
• About 25 percent of new infections in 1996 occurred among young people under age 21. At least one American under age 22 becomes infected with HIV every hour every day.
• A disproportionate number of African Americans and HispanicLatinos are living with AIDS. African Americans represent 36 percent of reported AIDS cases but only 13 percent of the total U.S. population. African American and HispanicLatina women consistently experience higher rates of AIDS than white women do.
• From 1994-97, the number of pediatric AIDS cases resulting from perinatal HIV transmission fell 55 percent, primarily because of the use of AZT with HIV-positive women and their infants. The number of HIV-positive women of childbearing age continues to increase, which will challenge our health care system to sustain the reduction in HIV transmission from mother to child.
• More children than ever before are living with AIDS, a result of new HIV infections among children and the availability of treatments that have helped reduce the death rate among children with AIDS.

The HIV/AIDS epidemic thus remains an enormous health emergency in the United States and it will remain so into the 2lst century. The state of the epidemic in 2000 points to an increase rather than a decrease in the overall need for health care, drug treatment and social services. As a nation, we must continue our efforts to expand access to these services for people living with HIV/AIDS, particularly in communities of color. The Ryan White CARE Act has proven to be an essential and effective part of the federal response to the HIV/AIDS crisis, and its future must be secured.

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Nearly three-quarters of Americans diagnosed with AIDS reside in an EMA and an estimated 156,000 people are expected to receive Title I services in FY 2000. Roughly two-thirds of those served by Title I are people of color. An increasing number of clients are low income, homeless, under-employed and dually and triply diagnosed with substance use and mental illness.

Through community-based sites, Title I supports the provision of: outpatient health care, including medical and dental care; pharmaceuticals, including HIV medications; mental health and substance abuse services; home hospice care; transitional housing; transportation; nutritional services; and case management services that prevent unnecessary hospitalization, expedite discharge from the hospital, and leverage other sources of financing for care for under-ensured and uninsured patients.

• Boston has identified $10 in care needs for every $1 received in Title I funding. Boston providers must turn away 95 percent of the HIV-positive people in need of medically supervised housing.
• In Los Angeles, 62 percent of those in need of primary care do not receive services because of inadequate Title I resources.
• In Baltimore, 73 percent of medical care needs for people with HIV cannot be addressed due to inadequate CARE Act resources.
• Las Vegas and Norfolk each reported more than 2,000 cases of AIDS in a recent 5-year period, indicating high rates of HIV transmission during the previous decade as well as a lack of health care resources to delay onset of AIDS among already infected persons.

• Unique among public health programs, Title I allows local jurisdictions to create and re-create comprehensive systems of HIV care and it provides the resources for them to deliver quality care to low-income uninsured and under-insured people living with HIV. This program has meant that each eligible area has been able to respond to the specific nature of the local HIV/AIDS epidemic and the presence or absence of other accessible health care and social service resources in the area.
• Local control ensures that Title I planning councils and grantees can identify the unique, local needs of people living with HIV, leverage available resources, and establish safety net programs. Title I resources have supported essential, life saving services to individuals most in need in America’s major urban areas.

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Starting in FY 1996, Congress made available special earmarked funds in response to the rapid growth in clients and costs experienced by the state AIDS Drug Assistance Programs (ADAPs). ADAPs provide medications to low income individuals with HIV disease who have limited or no coverage from private insurance or Medicaid. Each state receives Title II formula funding based on hvo key factors: the estimated number of people living with AIDS in the state as a whole, and the estimated number of people living with AIDS in the state outside of Title I EMAs.

Title II timds may be used to support a wide range of services, including: outpatient and ambulatory care, including medical and dental care and developmental and rehabilitative services; home and community-based health care and support services; continuation of health insurance coverage; pharmaceutical treatments; HIV care consortia; direct health and support services; and support services and inpatient case management services that expedite hospital discharge.

• State ADAPs, initially intended to provide a safety net of temporary prescription drug coverage, are now being called upon to fill a steadily growing gap in drug coverage.
• Growing numbers of clients using ADAP services, increases in survival rates, the approval of new, promising and expensive I-IN treatments, the acceptance of combination therapy as the standard of care, and restrictions on access to other public health care programs are straining the ability of ADAPs to meet demand.
• As the HIV/AIDS epidemic increasingly impacts communities of color, low income people, multiply diagnosed individuals and socially disadvantaged populations, the need for the wide range of direct medial and supportive services offered under Title II will greatly increase.

• In 1997, over 300,000 people received Title II services and 97,000 individuals received ADAP services.
• State and local Title II programs have contributed to the 47 percent decline in AIDS mortality in 1997 by placing and maintaining people living with HIV and AIDS in care and support systems and supporting such activities as medication adherence programs.

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Currently, 85,000 people living with HIV receive primary medical care from I8 ITitle Ill-funded providers, including Community and Migrant Health Centers, city and county health departments, Health Care for the Homeless Centers and diverse community-based organizations that specifically target communities of color and other historically under-served individuals and families.

Title III grantees are located in 40 states, the District of Columbia, and Puerto Rico. Title III services are coordinated with other CARE Act programs through Title I planning councils and statewide coordinated statements of need. More than two-thirds of Title III medical care patients are people of color, and nearly one-third are women.

Federal Grants -> Community Based Organizations -> Services to People with HIV/AIDS

• The HIV/AIDS epidemic continues to expand geographically and by specific population throughout the nation. New infections are occurring in areas where Title Ill resources are already present and also in areas where they are not. Title III now serves as a treatment safety net for tens of thousands of uninsured and under-insured persons with HIV who need and seek care. Already, more than two-thirds of new Title III patients have incomes below the poverty line, and one-half are completely uninsured.
• The need to build health care infrastructures where none previously existed continues to grow. Almost one-quarter of Title III programs are the only HIV medical outpatient program in the area. Title III resources will continue to be needed to deliver early intervention services to people in communities with expanding epidemics, and in areas where access to services has yet to be established.

• In 1997, Title III funded sites provided health outreach services to more than 762,800 individuals. Of that number, 3 15,234 received HIV testing and counseling; 72.5 percent of those who tested at Title III sites returned for test results and post-test counseling. A total of 3 percent of all individuals tested at Title III sites and 8 percent of homeless individuals tested at Title III sites were HIV-positive and received their HIV care at Title III sites.
• Like other CARE Act programs, Title III clinics create "one-stop-shopping" opportunities for HIV-related comprehensive medical care. Patients newly identified by a clinic’s testing center can stay within the clinic itself and undertake a program of early intervention to treat their HIV infection.
• HIV-positive women identified through basic prenatal visits can be counseled on the options for HIV early intervention and provided AZT to reduce the possibility of HIV transmission to their children, all in one setting. Wasteful administrative costs associated with fragmented care are avoided.

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In 1999 Title IV funds 48 grantees in 27 states, the District of Columbia, and Puerto Rico. These grantees provide and/or arrange for direct HIV services at over 300 clinical sites. In 1997, Title IV provided services to over 45,000 children, youth, women, and families. Title IV services are coordinated with other CARE Act programs through Title I planning councils and statewide coordinated statements of need.

Over 65 percent of Title IV programs are the principal source of medical care for children, youth and pregnant women with HIV/AIDS living in their geographic area. Medicaid does not fully reimburse Title IV projects for costs of medical care.

Federal Grants -> Community Based Organizations -> Services to Children, Youth, Women and Families

• Young people under age 25 account for half of all new HIV infections in the U.S., but represent a very small fraction of HIV-positive individuals receiving health care. The Title IV Adolescent Initiative responds to this crisis by providing grants to community-based organizations to recruit and retain HIV-positive youth into primary medical care and support services.
• As the number of HIV-positive women of childbearing age continues to rise, Title IV programs are needed to provide HIV-positive pregnant women with prenatal care, HIV counseling and testing, and access to treatment to improve their health and reduce perinatal HIV transmission.
• New treatments have helped to reduce the death rate among children with AIDS. As a result, more children than ever are living with HIV/AIDS and in need of Title IV services.

• Title IV projects provide comprehensive services to a steadily increasing caseload of low-income children, youth, and women. Title IV served 13 percent more clients in 1997 than in 1996, with significant increases in all age groups. From 1995 to 1997, the number of young people ages 13-24 served by Title IV increased by 225 percent.
• Title IV has been very successful at reaching people of color: in 1997, 58 percent of clients were African American, and 23 percent were Hispanic/Latino.
• The Title IV program has helped dramatically reduce the rate of perinatal HIV transmission. The recent Institute of Medicine report to Secretary Shalala on efforts to reduce perinatal transmission identified the key role that Title IV programs have played in this effort.

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The Special Projects of National Significance (SPNS) program is authorized under Part F of the CARE Act. It supports the development of innovative service models for HIV/AIDS care in order to provide health and social services to communities of color and historically under-served and hard-to-reach populations. Projects are designed to be replicable in other parts of the country, and have a strong evaluation component.

The SPNS program receives 3 percent of the funds appropriated to each of the four other titles of the CARE Act, up to a maximum of $25 million. Since FY 1991, the SPNS program has granted $119.9 million in funding to grantees across the country. In FY 1998, 51 grantees received $25 million.

• Managed care and its implications for W/AIDS service delivery.
• Infrastructure development training in under-served communities.
• Reducing barriers to care for hard-to-reach populations such as rural residents, women, adolescents, children, correctional populations, Native Americans, and Alaskan Natives.
• Targeting of set-vices to a variety of traditionally under-served populations, including adolescents, incarcerated individuals, residents of rural areas, and Native Americans.
• Integration of mental health and primary care services.

For four years, the SPNS program has collaborated with the Substance Abuse and Mental Health Services Administration (SAMHSA) and the National Instimte of Mental Health (NIMH), to co-fund 11 mental health service demonstration programs for people living with HIV/AIDS.

The SPNS program has funded new youth-focussed initiatives through the Health Care Services Demonstration Models for HIV Infected Youth.

Integrated Service Delivery Models support the development of formal linkages and the integration of health and support services. In collaboration with the U.S. Department of Housing and Urban Development (HUD), SPNS support programs to integrate services with housing assistance for people with HIV/AIDS and a serious mental illness and/or alcohol or substance abuse problem.

The SPNS program has also contributed to the development of research and evaluation infrastructures in many community-based organizations supported by these funds.

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• HIV patients are more susceptible to oral disease, such as oral lesions and oral infection, which can cause significant pain and lead to fevers, weight loss, and difftcuhy eating, speaking, or taking medication. Patient surveys consistently report oral health care as one of the greatest unmet needs of the HIV population.
• The debilitating nature of HIV disease often means that those patients seeking relief from dental conditions also lack the means to pay for these services. This situation is exacerbated because only a small percentage of the overall working population has dental insurance and most dental services are not covered under existing federal or state assistance programs, such as Medicaid.
• As HIV patients live longer and make oral health an integral part of their total health care, the demand for a broad range of dental services is expected to increase.

• In 1998, the CARE Act Dental Reimbursement Program provided retrospective reimbursement to 101 dental education institutions that treated over 66,000 patients who could not pay for their services. The $7.3 million paid to these institutions represented approximately 45 percent of the direct costs incurred from providing dental services to low-income HIV and AIDS patients.
• One northeastern dental program initiated innovative outreach activities to populations of HIV patients, including HIV infected children, clients of substance abuse treatment centers, and homeless patients. Knowing that partial reimbursement will be provided, even if retrospectively, enables the program to make commitments to diagnose and treat these patient populations.
• A partnership between a dental school in the western U.S. and a community AIDS service organization has resulted in direct patient referrals from the community to the dental school, and has significantly reduced the more than three-week waiting time for a dental appointment. Funding received from the CARS Act Dental Reimbursement Program offsets a portion of the costs of the providing treatment to these patients.
• Another east coast dental school established linkages with local health care and hospice programs, including a community hospital, the VA Hospital, and a prison project for the referral of indigent HIV and AIDS patients. CARE Act program funding helps offset the cost of 7 graduate dental trainees, which has increased their ability and willingness to treat people with HIV and AIDS.

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The regional AETCs are based in health science centers, which provide care and conduct clinical research in HIV/AIDS, providing a solid foundation for the development and dissemination of "best practices" from recognized HIV experts to other health care providers. These programs develop and tailor educational programs and clinical skills training to health care practitioners based upon regional and local needs.

• Early intervention for persons infected with HIV prevents disease progression and reduces health care costs.
• Health care providers throughout the country must be cognizant of the importance of early intervention and adherence to such treatment. Constantly changing clinical management guidelines require that this information be updated and disseminated to practicing clinicians in the field.
• As new and better treatments are developed and the epidemic continues to grow, the need for clinical case consultation to determine the best possible regimen and develop strategies and behavioral intervention to optimize adherence will also grow. This need will be felt especially in lower incidence, rural, and medically under-served areas, where many people with HIV and AIDS live.

• The AETCs provide ongoing HIV information updates to more than 70,000 healthcare providers annually, targeting key providers in CARE Act funded programs, Community and Migrant Health Centers and providers serving communities of color.
• The AETCs have established a national network of more than 5,000 trained providers serving as HIV expert resources in their local communities. The program involves and integrates people living with HIV/AIDS at all levels of program planning, delivery, and evaluation.
• Selected AETCs have taken the lead in assisting CARE Act agencies to develop standards of care, quality assurance mechanisms, and continuous quality improvement programs.
• A national impact study demonstrated a significant increase in AETC-trained professionals’ knowledge, skills and willingness to provide HIV care.
• The AETC program has successfully multiplied its resources for training by developing extensive linkages with other federal, state and local agencies and non-governmental organizations. The result has been the extension of programming far beyond the core resources that make it possible to establish and operate the centers.

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