The Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act, Pub.L. 101–381, 104 Stat. 576, enacted August 18, 1990), was an act of the United States Congress and is the largest federally funded program in the United States for people living with HIV/AIDS. The act sought funding to improve availability of care for low-income, uninsured and under-insured victims of AIDS and their families. The act is named in honor of Ryan White, an Indiana teenager who contracted AIDS through a tainted hemophilia treatment. He was diagnosed with AIDS in 1984 and was subsequently expelled from school because of the disease. White became a well-known advocate for AIDS research and awareness, until his death on April 8, 1990.
Ryan White programs are "payer of last resort" which fund treatment when no other resources are available. As AIDS has spread, the funding of the program has increased. In 1991, the first year funds were appropriated, around US$220 million were spent; by the early 2000s, this number had almost increased 10-fold. The Act was reauthorized in 1996, 2000, 2006, and 2009. The program provides some level of care for around 500,000 people a year and, in 2004, provided funds to 2,567 organizations. The Ryan White programs also fund local and state primary medical care providers, support services, healthcare provider training programs, and provide technical assistance to such organizations.
In fiscal year 2005, federal funding for the Ryan White CARE Act was $2.1 billion. As of 2005, roughly one-third of this money went to the AIDS Drug Assistance Programs (ADAP) which provides drugs for 30 percent of HIV-infected patients. The primary activity of ADAP is providing FDA-approved prescription medication.
The Ryan White CARE Act mandates that EMS personnel can find out whether they were exposed to life-threatening diseases while providing care. (This notification provision was included in the original 1990 act, dropped in the 2006 reauthorization, and reinstated in the 2008 reauthorization).
This summary is from Wikipedia.
The summary below was written by the Congressional Research Service, which is a nonpartisan division of the Library of Congress.
7/31/1990--Conference report filed in House.
Ryan White Comprehensive AIDS Resources Emergency Act of 1990 - Title I: HIV Emergency Relief Grant Program - Amends the Public Health Service Act to direct the Secretary of Health and Human Services, through the Administrator of the Health Resources and Services Administration, to make grants in any metropolitan area that has reported and confirmed more than 2,000 acquired immune deficiency syndrome (AIDS) cases or a per capita incidence of at least 0.0025 (eligible area). Requires that the grants be directed to the chief elected official of the city or urban county that administers the public health agency serving the greatest number of individuals with AIDS in the eligible area. Requires that official to establish: (1) through intergovernmental agreements, an administrative mechanism to allocate funds and services; and (2) an HIV health services planning council. Allows the official to establish the council directly or by designating an existing entity to serve as the council. Provides, at specified times, that one-half of funds appropriated for the grants be used for regular grants and one-half be used for supplemental grants. Requires that grant funds be used for: (1) outpatient and ambulatory health and support services, including case management and comprehensive treatment services; and (2) inpatient case management services that prevent unnecessary hospitalization or that expedite discharge. Requires the chief official, in providing assistance, to give priority to entities currently participating in Health Resources and Services Administration HIV health care demonstration projects. Allows, if the council finds there is a personnel shortage, up to ten percent of the grant funds to be used for recruiting, training, and paying compensation of services of personnel, for entities that provide HIV-related care or services to a disproportionate share of low-income individuals and families with HIV disease, incur uncompensated costs, and meet other requirements. Requires that services covered by Medicaid be provided by providers with Medicaid provider status. Specifies information and assurances which must be included in a grant application. Limits (in some cases prohibits) the imposition of fees for services under the grants. Authorizes appropriations. Title II: HIV Care Grants - Directs the Secretary, subject to the availability of appropriations, to make grants to States to improve the quality, availability, and organization of health care and support services for individuals and families with HIV disease. Allows the grants to be used: (1) to establish and operate HIV care consortia within areas most affected by HIV disease to provide a comprehensive continuum of care; (2) to provide home- and community-based care services; (3) to provide assistance to assure the continuity of health insurance coverage; and (4) to provide treatments that have been determined to prolong life or prevent serious deterioration of health. Requires that at least 15 percent of the funds be used for health and support services to infants, children, women, and families with HIV disease. Details, for each of the four categories of grants, the uses of funds, the assurances and information required in the application, and certain priorities. Limits (in some cases prohibits) the imposition of fees for services under the grants. Requires non-Federal matching funds in specified ratios. Directs the Secretary to use up to ten percent of specified amounts to establish and administer a special projects of national significance program, awarding grants based on the need to assess the effectiveness of a particular care and treatment model, the innovative nature of the activity, and the potential replicability of the activity. Details permissive uses for the funds and sets forth a formula for determining the amount of a grant. Authorizes appropriations to make the grants provided for in this title. Title III: Early Intervention Services - Directs the Secretary, through the Director of the Centers for Disease Control, to make an allotment for each State each fiscal year to provide, with respect to HIV disease, the following outpatient early intervention services: (1) counseling individuals; (2) testing individuals, including tests to confirm the presence of the disease, to diagnose the extent of the deficiency in the immune system, to provide information on therapeutic measures for preventing and treating the deterioration of the immune system and for preventing and treating conditions arising from the disease; (3) referrals; (4) other clinical and diagnostic services, and periodic medical evaluations; and (5) therapeutic measures. Allows a State to provide the services directly or through other entities. Lists optional services. Requires States to earmark certain percentages of the grants for certain services. Requires that services covered by Medicaid be provided by providers with Medicaid provider status. Requires matching non-Federal funds in a specified ratio. Requires that an entity receiving grant funds that regularly provides treatment for sexually transmitted diseases, regularly provides intravenous substance abuse treatment, is a family planning clinic, or provides treatment for tuberculosis offer and encourage the early intervention services to individuals it serves. Requires a State grant recipient to: (1) encourage individuals in the State receiving a transfusion of whole blood or a blood-clotting factor between January 1, 1978, and April 1, 1985, to receive early intervention services; and (2) inform such individuals of public health facilities in the geographic area that provide such services. Declares that these requirements do not mandate individual notifications. Requires that a State grant recipient mandate that any entity carrying out testing for HIV disease confidentially report to the State public health officer information sufficient to: (1) perform statistical and epidemiological analyses of the incidence of the disease; (2) perform statistical and epidemiological analyses of the demographic characteristics of individuals with the disease; and (3) assess the adequacy of early intervention services. Requires a State grant recipient to require that the State public health officer, to the extent appropriate in the determination of the officer, carry out a program of partner notification with respect to cases of HIV disease. Declares that these reporting and partner notification provisions do not require or prohibit a State from providing that identifying information concerning individuals with HIV disease is required to be submitted to the State. Prohibits a grant to a State unless its chief executive officer determines that the criminal laws of the State are adequate to prosecute any HIV infected individual who knowingly and intentionally exposes a nonconsenting individual to HIV through a donation of blood, semen, or breast milk, through sexual activity, or through sharing of a hypodermic needle. Makes the existence of a criminal law of general application, which can be applied to such conduct, sufficient for compliance. Sets forth a formula for determination of the amounts of allotments. Requires a State to submit to the Secretary a comprehensive plan for the organization and delivery of the early intervention services. Authorizes appropriations for the allotments to States. Authorizes the Secretary, through the Administrator of the Health Resources and Services Administration, to make grants with respect to HIV disease, for these early intervention services: (1) counseling individuals; (2) testing individuals, including tests to confirm the presence of the disease, to diagnose the extent of the deficiency in the immune system, to provide information on therapeutic measures for preventing and treating the deterioration of the immune system and for preventing and treating conditions arising from the disease; (3) referrals; (4) other clinical and diagnositc services, and periodic medical evaluations; and (5) therapeutic measures. Allows a grantee to provide the services directly or through other entities. Lists optional services. Requires that grant recipients be migrant health centers, community health centers, grantees under provisions relating to health services for the homeless, grantees (other than States) under provisions relating to family planning, comprehensive hemophilia diagnostic and treatment centers, Federally-qualified health centers under specified provisions of the Social Security Act, or nonprofit private entities that provide comprehensive primary care services to populations at risk of HIV disease. Requires that services covered by Medicaid be provided by providers with Medicaid provider status. Sets forth certain preferences in making the grants. Requires grants regarding early intervention services for individuals with hemophilia to be made through the network of comprehensive hemophilia diagnostic and treatment centers. Authorizes appropriations. Requires information regarding the receipt of early intervention services to be kept confidential in a manner not inconsistent with applicable law. Requires written informed consent prior to testing. Allows: (1) use of a pseudonym in signing a consent form; and (2) consent to be given orally when an individual is to undergo testing without providing any identifying information. Requires counseling before testing and, for both individuals with negative and individuals with positive results, after testing. Allows counseling without testing. Requires that testing by grant recipients be carried out in accordance with the requirements of this Act regarding confidentiality, informed consent, and counseling regardless of whether the testing is carried out with Federal funds. Requires that, to the extent permitted under State law, grant recipients offer substantial opportunities for an individual to undergo counseling and testing without giving any identifying information or using a pseudonym. Prohibits requiring an individual to undergo testing as a condition to receiving other health services unless the testing is medically indicated in the provision of the health services sought by an individual. Limits (in some cases prohibits) the imposition of fees for services provided for in this title. Prohibits the counseling programs from being designed to promote or encourage, directly, intravenous drug abuse or sexual activity, homosexual or heterosexual. Requires them to: (1) be designed to reduce exposure to and transmission of HIV disease by providing accurate information; and (2) provide information on the health risks of promiscuous sexual activity and intravenous drug abuse. Amends the Prison Testing Act of 1988 to: (1) transfer all provisions relating to testing of State prisoners to the Public Health Service Act; and (2) authorize appropriations to carry out such provisions. Replaces all except the authorization of appropriations with provisions authorizing the Secretary to make grants to States for early intervention services to individuals sentenced by the State to imprisonment. Requires that such individuals be informed of: (1) the prisoner testing requirements under this Act; and (2) the results of the testing. Requires non-Federal matching funds. Mandates that States require testing of prisoners upon entering the State penal system and during the 30-day period before release. Sets forth requirements regarding disclosure of test results to prison employees, spouses of prisoners, and victims of rape and aggravated sexual assault. Requires confidentiality of test results except for such persons and except for disclosures as medically necessary. Allows the prison grants only to those prisons for which the State public health officer has determined that the provision of such services is appropriate with respect to the public health and safety. Applies provisions of this Act relating to informed consent, counseling, and other matters to the prison grants. Title IV: General Provisions, Reports and Evaluations - Subtitle A: General Provisions - Directs the Secretary, through the Administrator of the Health Resources and Services Administration and the Director of the National Institutes of Health, to make demonstration grants for: (1) clinical research on therapies for pediatric patients and pregnant women with HIV disease; and (2) outpatient health care for such patients and their families. Requires that applicants: (1) have entered into a cooperative agreement or contract with a biomedical research entity for assistance in designing and conducting the research protocol; and (2) agree to provide the data developed in the research to the Director. Authorizes the Secretary, through the Director, to assist grantees in designing and conducting the protocols. Requires the Secretary, through the Director, to analyze the data submitted. Requires grantees to provide, for the pediatric patient and the family of the patient: (1) case management; (2) referrals; and (3) such transportation, child care, and other incidental services as necessary to enable participation in the program. Authorizes appropriations. Directs the Secretary to: (1) develop and make available to personnel at blood banks and facilities that produce blood products materials and information on measures to protect the safety of the blood supply; and (2) develop and implement a training program to increase the number of Department of Health and Human Services employees qualified to inspect such blood banks and facilities. Authorizes appropriations. Directs the Secretary, through the Agency for Health Care Policy and Research, to establish a program to enable independent research to be conducted regarding: (1) the impact and cost-effectiveness of major models for organizing and delivering HIV-related services; (2) private sector financing for HIV-related health and support services; (3) how different points-of-entry affect cost, quality, and outcome; and (4) major and continuing unmet needs. Authorizes appropriations. Subtitle B: Emergency Response Employees - Directs the Secretary to make grants to States and their political subdivisions to assist in the implementation of Federal law mandating the dissemination of guidelines to emergency response employees (EREs) regarding reducing the risk in the workplace of becoming infected with the etiologic agent for AIDS and circumstances under which exposure may occur. Authorizes appropriations. Directs the Secretary to develop and disseminate: (1) a list of life-threatening infectious diseases to which EREs may be exposed, including those that are routinely transmitted through airborne or aerosolized means; (2) guidelines describing the circumstances in which EREs may be exposed; and (3) guidelines describing the manner in which medical facilities should make determinations under these provisions. Provides for: (1) routine notification of a designated officer by a medical facility that determines that a victim of an emergency who was transported by EREs has an airborne infectious disease; (2) initiation by an ERE of an examination of circumstances to determine whether the ERE may have been exposed to an infectious disease; and (3) procedures for notification of a designated officer and notification of an ERE of exposure. Requires the public health officer of each State to designate one official or officer of each employer of EREs in the State to receive notification and make requests. Authorizes the Secretary to commence a civil suit to obtain temporary or permanent injunctive relief for any violation of these provisions. Directs the Secretary to establish an administrative process for encouraging EREs to provide information to the Secretary regarding violations of these provisions. Makes certain of these provisions relating to EREs inapplicable in a State if the chief executive officer certifies that the law of the State is in substantial compliance. Subtitle C: Miscellaneous Provisions - Requires that any State that received a waiver for FY 1989 under specified provisions of the Public Health Service Act relating to alcohol, drug abuse, and mental health services block grants be granted a waiver for FY 1990 and 1991. Prohibits funds made available in this Act, or an amendment made by this Act, from being used to provide individuals with hypodermic needles or syringes so that the individuals may use illegal drugs.