Introduction

The operative question behind the Ryan White CARE Act is precise: who pays for HIV care when the person who needs that care has no insurance, holds insurance that excludes the decisive services, or earns too little to meet the cost sharing that stands between a prescription and the pharmacy counter? Congress legislated against a documented failure. Through the nineteen eighties, illness removed wages, loss of employment removed coverage, and Medicaid rules built around categorical tests excluded many adults with HIV who had not received an AIDS diagnosis. Public hospitals in the hardest hit cities absorbed the expense until the expense exceeded municipal capacity, and a year of the principal antiretroviral drug cost about eight thousand dollars at introduction. No dedicated federal care program existed for people with HIV who lacked insurance, and the fragments of federal support that did exist addressed research, prevention, and demonstration grants rather than the continuing cost of treatment.

The statute that answered the question carries a formal identity that fixes the program in law. The Ryan White Comprehensive AIDS Resources Emergency Act of 1990, Public Law 101-381, at 104 Statutes at Large 576, was signed on August 18, 1990, and took effect as Title XXVI of the Public Health Service Act. The measure created the largest federal program dedicated to a single disease, a standing grant structure through which federal money reached cities, states, clinics, and community organizations that delivered outpatient care, medications, case management, and support services to low income people with HIV. The design contained a discipline that shaped every later development: grant funds paid last, behind Medicaid, Medicare, private insurance, and every other payer, so the program filled the space that other coverage left open rather than displacing that coverage.

A profile of the statute has to follow the money and the name together. The name belonged to an Indiana teenager whose exclusion from school became the public record against which Congress acted, and the legislative path from introduction to signature consumed one hundred sixty five days. The architecture divided the appropriation among parts that funded metropolitan areas, states, clinics, families, and training and dental programs under distinct rules. One part inside the state grants, the AIDS Drug Assistance Program, supplied the medications on which survival depended and produced waiting lists when a capped appropriation met rising demand. Four reauthorizations revised the formulas and the categories, and then the authorization expired while appropriations continued, leaving a program that operated for years on annual funding acts alone. The profile proceeds in that order, from origins through enactment, architecture, the payer of last resort rule, drug assistance, and the reauthorization record, and the account sits inside the wider sequence of federal health legislation that the series traces across the postwar decades.

Origins and the Person Behind the Name

The Epidemic Before the Statute

The Ryan White Comprehensive AIDS Resources Emergency Act of 1990, Public Law 101-381, signed by President George H. W. Bush on August 18, 1990, answered a gap that had been visible in American hospitals for most of a decade. Acquired immunodeficiency syndrome, shortened to AIDS, had first been recognized in the United States in 1981, when federal epidemiologists began tracking clusters of opportunistic infections and rare cancers in patients whose immune systems had failed without an established cause. The virus responsible, the human immunodeficiency virus, or HIV, was identified in 1984, and a blood test followed in 1985, but identification of the agent did not produce a system for paying for care. Through the second half of the decade, the caseload grew along lines that concentrated expense in a small number of places, and the institutions that absorbed that expense were, in the main, public hospitals and municipal health departments.

The mortality record assembled by the Centers for Disease Control and Prevention measured the scale. From 1981 through 1990, health departments reported 100,777 deaths among persons with AIDS to the Centers for Disease Control and Prevention, and 31,196 of those deaths, almost one third of the cumulative total, were reported during 1990 alone. Nearly three fourths of the deaths occurred among persons between the ages of 25 and 44. By 1988, HIV infection and AIDS had become the third leading cause of death among men in that age group, and by 1989 federal analysts estimated that the disease ranked second among causes of death for those men, ahead of heart disease, cancer, suicide, and homicide. Federal analysts estimated that one million persons in the United States were infected with HIV by the end of the decade.

Geography turned a national epidemic into a local fiscal emergency. Cases clustered in a limited set of metropolitan areas, among them New York, San Francisco, Miami, Los Angeles, and Houston, and within those areas a limited set of hospitals carried a disproportionate share of admissions. The Institute of Medicine, reviewing congressional hearings held in the late 1980s in an assessment commissioned by Congress, recorded that public hospitals in highly affected urban centers, including New York, Miami, and San Francisco, reported being overwhelmed by the cost of medical care for underinsured and uninsured persons with complex medical problems related to AIDS. The same review recorded the payment mechanism plainly: persons with AIDS had lost access to private insurance coverage because of poor health, termination of employment, and ineligibility for Medicaid. Illness removed wages, loss of employment removed insurance, and Medicaid rules, built around categorical tests and income thresholds that varied by state, excluded many adults with HIV who had not yet received an AIDS diagnosis.

Treatment, where treatment existed, added a second financial barrier on top of hospitalization. Federal regulators approved zidovudine, known as AZT, on March 19, 1987, and AZT stood through the end of the decade as the principal antiretroviral drug authorized for use against HIV. Burroughs Wellcome, the manufacturer, priced a year of AZT at about $8,000 at introduction, a charge that fell on the patient when insurance was absent and on the hospital or a state program when the patient could not pay. A drug at that price, taken indefinitely, converted HIV care from an episodic emergency expense into a permanent obligation that neither private charity nor municipal budgets had been designed to carry. Federal support before 1990 arrived in fragments: research appropriations through the National Institutes of Health, prevention funding through the Centers for Disease Control and Prevention, and limited demonstration grants. The Institute of Medicine assessment recorded that those earlier grants had a limited authorization and were unable to provide support to the growing number of localities being affected by the epidemic. Beginning in 1987, members of Congress discussed construction of a comprehensive federal relief program aimed at the disproportionate effect of the epidemic on specific urban settings and on the providers serving them. No dedicated federal care program existed for people with HIV who lacked insurance. Section 2 of the enrolled law stated the purpose in operational terms: emergency assistance to localities disproportionately affected by the HIV epidemic, and financial assistance to states and to other public and private nonprofit entities to build more effective and cost efficient systems for delivering essential services to individuals and families with HIV disease.

A Diagnosis in Kokomo

The name attached to that statute belonged to a teenager from Indiana whose medical history illustrated, in a single case, the exposure routes, the treatment limits, and the payment failures of the decade. Ryan Wayne White was born on December 6, 1971, at St. Joseph Memorial Hospital in Kokomo, Indiana, to Hubert Wayne White and Jeanne Elaine White. Bleeding after circumcision failed to stop, and at three days old White received a diagnosis of severe hemophilia A, a hereditary blood coagulation disorder linked to the X chromosome in which even minor injuries can produce severe bleeding. Treatment consisted of regular infusions of Factor VIII, a blood product manufactured from pooled plasma collected from large numbers of donors, and the infusions controlled bleeding well enough that White lived a largely ordinary childhood, interrupted by hospital visits for hemorrhages in joints.

Factor VIII also carried the epidemic into the hemophilia population at exceptional rates. Because HIV entered the blood supply before the virus had been identified and before any screening test existed, pooled concentrate manufactured from thousands of donations could carry the virus from a single infected donation into many vials. Among persons with hemophilia treated with blood clotting factors between 1979 and 1984, nearly 90 percent became infected with HIV, hepatitis C, or both, according to figures compiled in federal and clinical reviews of the period. Heat treatment and donor screening, adopted after the 1985 licensing of the HIV antibody test, protected patients treated in later years. For patients treated in the earlier window, including White, protection arrived after exposure had already occurred.

White became extremely ill with pneumonia in December 1984, shortly after a thirteenth birthday. On December 17, 1984, during a lung biopsy performed as part of that illness, physicians diagnosed AIDS. The T-cell count measured at diagnosis stood at 25 cells per cubic millimeter, against a healthy range of roughly 500 to 1,200. Physicians predicted that White had six months to live, a prognosis that reflected the clinical record of 1984, in which no antiretroviral therapy existed in any form. White recovered from the immediate illness instead, and by early 1985 White felt well enough to ask about returning to school. That request converted a private medical case into a public legal contest, and the contest, rather than the diagnosis alone, carried the name into national politics.

The Fight to Return to School

Western Middle School stood in Russiaville, Indiana, and operated under the Western School Corporation, the district serving the Kokomo area. On June 30, 1985, district superintendent James O. Smith denied a formal request for White to return to classes, and the denial began an administrative appeal process that extended across more than nine months of the 1985-1986 school year. The Centers for Disease Control and Prevention and Dr. Woodrow Myers, the Indiana state health commissioner, both informed the board that White posed no risk to other students, because HIV spread through blood and sexual contact and not through the casual contact of a classroom. In February 1986, The New England Journal of Medicine published a study of 101 people who had spent three months living in close but nonsexual contact with people with AIDS, and the study concluded that the risk of infection from such contact was minimal to nonexistent.

Local pressure moved against that evidence. Western Middle School enrolled about 360 students, and 117 parents and 50 teachers signed a petition asking school leaders to keep White out of the building. White followed seventh grade lessons by telephone from home when classes resumed on August 26, 1985. A hearing officer for the Indiana Department of Education ruled on November 25, 1985, that the school had to follow Indiana Board of Health guidelines and admit White. The school board voted 7 to 0 on December 17, 1985, to appeal. The Department of Education ruled again in favor of admission on February 6, 1986, the Howard County health officer determined on February 13, 1986, that White was fit for school, and a Howard County judge refused on February 19, 1986, to issue an injunction against attendance. White returned to the building on February 21, 1986, and 151 of the 360 students enrolled at the school stayed home on that single day. A different judge granted a restraining order that same afternoon, barring White again. Opponents of admission held an auction in the school gymnasium on March 2, 1986, to raise money for the effort to keep White out. On April 10, 1986, Circuit Court Judge Jack R. O’Neill dissolved the restraining order, and White returned to school under that ruling. The Indiana Court of Appeals declined on July 18, 1986, to hear further appeals, and the legal right to attend stood settled from that point.

Attendance under the ruling carried conditions that marked the student as separate. The school required White to eat with disposable utensils, to use a separate bathroom, and to forgo gym class. Threats escalated to property violence when a bullet was fired through the living room window of the family home while no one was inside. After that school year ended, the family left Kokomo and settled in Cicero, Indiana, where White entered Hamilton Heights High School, in nearby Arcadia. The reception in Cicero followed a deliberate plan. Principal Tony Cook and superintendent Bob G. Carnal greeted White on arrival, students at the school had received education about HIV transmission before the first day, and students shook hands with White in greeting. Cook had spent the period before enrollment gathering material from the Indiana State Board of Health and the Centers for Disease Control and Prevention and presenting that material to students and parents, so that the factual record reached the school community before rumor could define the arrival. White attended classes, dances, and sports functions at Hamilton Heights and held a job. The contrast between the two school communities became the central exhibit in the public argument White made for the rest of White’s life: identical medical facts produced exclusion in one town and ordinary schooling in another, and the variable that differed was education about the disease.

A National Voice From Cicero

Press coverage of the Russiaville fight had made White a national figure before the move to Cicero, and the years after the move converted that attention into a platform. White appeared on national television programs and in national magazines, spoke at benefits and educational events for children with AIDS, and described a consistent distinction that structured the public argument: fear of AIDS rested on false beliefs about transmission, and correction of those beliefs changed behavior toward people living with the disease. Celebrities who appeared publicly alongside White, among them singers Elton John and Michael Jackson, diver Greg Louganis, and actor Alyssa Milano, extended the reach of that message into audiences that public health announcements had not reached. Accounts of White’s public statements recorded repeated discomfort with remarks that blamed White’s parents for the illness, and with any suggestion that some people with AIDS deserved sympathy that others did not. The position White stated across settings was that compassion and factual education applied to every person with the disease, regardless of the route of infection.

The most formal statement of that position came in March 1988, when White, at age 16, testified before the President’s Commission on the HIV Epidemic in Washington. The testimony recounted the Kokomo experience in specific terms: restaurants discarding dishes after White ate from them, a school locker vandalized, people leaving rooms to avoid sitting near White, and congregants at church declining to shake White’s hand. Against that record, the testimony placed Cicero, where an informed school community had admitted White without restriction, and White presented the two experiences as a controlled comparison in the value of AIDS education. The commission, appointed by President Reagan in 1987, delivered a final report in June 1988 that called for expanded federal action on care, research, and antidiscrimination protection. In January 1989, the ABC network broadcast The Ryan White Story, a television film dramatizing the diagnosis and the school fight, and Nielsen measurements estimated an audience of 15 million viewers for the broadcast. By the end of the decade, the Indiana case had become, through the testimony, the film, and hundreds of interviews, the most widely recognized individual account of the epidemic in the United States.

Death and a Mother in Washington

White’s health held through most of the Hamilton Heights years and then failed quickly in the spring of 1990. In March 1990, White traveled to California and hosted an after-Oscars party with former President Ronald Reagan and Nancy Reagan, an event that stood as White’s final public appearance. On March 29, 1990, White entered Riley Hospital for Children in Indianapolis with a respiratory tract infection. The condition deteriorated, physicians sedated White and placed White on a ventilator, and Elton John visited the hospital and answered telephone calls from well-wishers during the admission. White died on April 8, 1990, in Indianapolis, at age 18, of AIDS-related pneumonia. The death came five years and four months after a diagnosis that had carried a six month prognosis, and about four months before the statute bearing White’s name became law. White was buried in Cicero, near the family home.

Grief converted into lobbying within weeks. While White lay in Riley Hospital, Senator Edward Kennedy of Massachusetts, chairman of the Senate Labor and Human Resources Committee, telephoned the hospital, and, according to Jeanne White’s later accounts, informed the family that the pending AIDS care legislation would carry Ryan White’s name. After the funeral, requests reached Jeanne White from Washington asking for help with the bill, and Senator Orrin Hatch of Utah, the senior Republican on the Labor and Human Resources Committee, pressed the case for participation. Jeanne White later recounted that Hatch had lined up senators for meetings and had answered a protest about a lack of political experience with an instruction to speak as a mother and to tell senators what watching a child live and die with the disease had involved. Jeanne White traveled to Washington shortly after the funeral and met senators individually, asking each senator, when condolences were offered, for a vote in return. Jeanne White sat in the Senate gallery during floor consideration of the bill, a presence Senator Hatch acknowledged from the floor in later years when describing the naming of the measure, and press accounts of the 1990 campaign credited Jeanne White with recruiting additional cosponsors for a bill whose support had begun to stall before the trip.

A Name Placed on a Bill

The naming itself was a formal legislative act, executed through amendment rather than through ceremony. Senator Kennedy introduced the measure in the Senate on March 6, 1990, as S. 2240, under the title Comprehensive AIDS Resources Emergency Act of 1990. The short title at introduction carried the descriptive acronym CARE and no personal name. The Labor and Human Resources Committee reported the bill to the Senate on April 24, 1990, sixteen days after White’s death, with Senate Report 101-273. Floor consideration followed in May. On May 15, 1990, Senator Hatch proposed an amendment to change the title of the bill, and a further amendment, offered by Hatch on behalf of Kennedy, changed the short title to the Ryan White Comprehensive AIDS Resources Emergency Act of 1990. The Senate agreed to the title amendments by voice vote on May 15, 1990, and passed the bill itself on May 16, 1990, by a vote of 95 to 4. The House of Representatives passed the Senate bill on June 13, 1990, a conference committee filed a report on July 31, 1990, and both chambers agreed to the conference report on August 4, 1990. President George H. W. Bush signed the measure on August 18, 1990, and the law entered the statute books as Public Law 101-381, at 104 Statutes at Large 576.

Attaching a person’s name to a statute performs work that a descriptive title cannot. A descriptive title left the bill in the category of measures that legislators could support, oppose, or ignore on budgetary grounds alone. The personal name attached the funding question to a documented record: a schoolboy from Indiana, infected through a licensed blood product administered as medical treatment, excluded from a public school against the advice of state and federal health officials, and dead at 18 before the bill reached the President. For the bill’s managers, Kennedy and Hatch, the name also protected the measure against attacks aimed at particular groups of patients, because an attack on the bill after May 15, 1990, read in public as an attack on the named teenager’s memory and on a mother seated in the gallery. The 95 to 4 Senate margin recorded the practical effect. Federal statutes rarely carry the name of a private citizen, and almost never the name of a citizen who died as a minor.

The Legislative Path and Enactment

Introduction in the Senate and Committee Action

Senator Edward Kennedy of Massachusetts introduced S. 2240 in the Senate on March 6, 1990. The bill proposed amendments to the Public Health Service Act to provide grants to improve the quality and availability of care for individuals and families with HIV disease, and its introduced short title was the Comprehensive AIDS Resources Emergency Act of 1990. The Senate read the bill twice and referred the bill to the Committee on Labor and Human Resources, the committee that Kennedy chaired. Senator Orrin Hatch of Utah served as the ranking Republican member of that committee, and the Kennedy and Hatch partnership gave the measure a Democratic sponsor and a Republican partner drawn from the leadership of the same committee of jurisdiction. Hatch participated directly in the floor management of S. 2240 through amendments offered in his own name and through an amendment offered for Kennedy.

The House of Representatives proceeded on a parallel track under Representative Henry Waxman of California. Waxman sponsored the House companion effort that reached the House floor as H. R. 4785, the AIDS Prevention Act of 1990, a measure built through the Committee on Energy and Commerce and its Subcommittee on Health and the Environment, the subcommittee that Waxman chaired. The subcommittee received testimony on the predecessor House bill, H. R. 4470, during hearings held on April 15 through April 19, 1990, and the full committee ordered H. R. 4785 reported, as amended, on May 16, 1990, according to the Congressional Record Daily Digest for that date. The House measure joined preventive health services and counseling and testing provisions to grants for care, and the House short title reflected that broader preventive framing.

The Labor and Human Resources Committee completed action on S. 2240 in two steps separated by a death that altered the public presentation of the bill. A process summary of the measure recorded that the committee approved S. 2240 unanimously on April 4, 1990. Ryan White, the Indiana teenager whose exclusion from school after an AIDS diagnosis in 1984 had drawn sustained national attention, died in Indianapolis on April 8, 1990, at the age of 18. On April 24, 1990, the committee reported S. 2240 to the Senate, with Kennedy reporting the bill with an amendment in the nature of a substitute and with written report No. 101-273. The committee substitute replaced the introduced text as the vehicle for floor consideration, so the Senate took up a committee product rather than the bill exactly as introduced on March 6, 1990.

The naming of the act followed the committee report. Accounts published in 1993 and summarized in later scholarship credited Jeanne White, the mother of Ryan White, with traveling to Washington after the funeral of her son, asking senators who offered condolences to support the bill, and recruiting 29 additional cosponsors through that effort. On May 15, 1990, during Senate floor consideration, Hatch offered Amendment No. 1620 to amend the title of the bill, and Hatch then offered Amendment No. 1621 for Kennedy to change the short title to the Ryan White Comprehensive AIDS Resources Emergency Act of 1990. The Senate agreed to both amendments by voice vote, and the enacted statute carried the Ryan White name in Section 1 as the official short title.

The Senate Floor and the Contest Over Conditions

Senate consideration occupied the days before May 16, 1990, and the amendment record showed a bill whose care and treatment core attracted broad support while particular funding conditions drew recorded fights. Senator Malcolm Wallop of Wyoming offered Amendment No. 1616 on May 15, 1990, to amend Title II of the bill to allow the use of funds for chronic illnesses in states with fewer than 100 AIDS cases. The Senate rejected the Wallop amendment by a vote of 33 to 65, Record Vote No. 92, and the rejection kept the grant structure tied to HIV disease rather than opening Title II funds to chronic illness generally in low incidence states. Senator Barbara Mikulski of Maryland offered Amendment No. 1618 on reporting and partner notification with respect to cases of infection, and Kennedy offered Amendment No. 1619 to the Mikulski amendment to facilitate treatment and notification of individuals with HIV disease and their families. The Senate agreed to both amendments by voice vote. Hatch obtained agreement by voice vote to Amendment No. 1617, described in the congressional record as an amendment of a clarifying nature.

The sharpest recorded disputes on May 16, 1990, concerned needles, bleach, and the blood supply, and the Senate disposed of paired proposals from Senator Jesse Helms of North Carolina and from Kennedy on each subject. Helms offered Amendment No. 1624 to prohibit the use of funds made available under the act for the distribution of needles or bleach for cleaning needles. The Senate rejected the Helms amendment by a vote of 28 to 70, Record Vote No. 93. Kennedy then offered Amendment No. 1625 to prohibit the use of funds for needle distribution programs, and the Senate agreed to the Kennedy amendment by a vote of 98 to 0, Record Vote No. 94. The contrast between the two votes defined the enacted restriction: distribution of needles fell under an express prohibition that commanded unanimous support in the vote recorded on the Kennedy text, while the Helms proposal, which extended the prohibition to bleach distributed for cleaning needles, attracted 28 votes. The summary of the enacted act recorded the resulting rule as a prohibition on the use of funds made available under the act to provide individuals with hypodermic needles or syringes so that such individuals may use illegal drugs.

The blood supply amendments followed the same pattern of a Helms proposal, a Kennedy alternative, and opposite outcomes. Helms offered Amendment No. 1626 to make it unlawful for any individual to knowingly donate or sell, or to attempt to donate or sell, blood, semen, tissues, organs, or other bodily fluids under certain circumstances. The Senate rejected the Helms amendment by a vote of 47 to 52, Record Vote No. 95, a margin of five votes that stood as the closest recorded division of the final day of Senate consideration. Kennedy offered Amendment No. 1627 to condition the receipt of grants on assurances by state officials that state laws were adequate to protect donated blood, and the Senate agreed to the Kennedy amendment by a vote of 99 to 0, Record Vote No. 96. Hatch offered Amendment No. 1628 to provide resources to the Food and Drug Administration to assure a safe supply of blood and blood products, and the Senate agreed to the Hatch amendment by voice vote. Senator Don Nickles of Oklahoma offered Amendment No. 1629 to make technical corrections in the Prison Testing Act provisions, and Senator Dan Coats of Indiana offered Amendment No. 1630 to remove the provision relating to waiver of the infants and women set-aside requirement. The Senate agreed to both amendments by voice vote.

The disputes over needles and blood unfolded against an earlier fight over the content of federally funded AIDS education that had already produced statutory language before S. 2240 reached the floor. An amendment sponsored by Helms and attached to an appropriations bill enacted before the June 1988 oversight hearings on AIDS education barred the Centers for Disease Control from funding programs that directly or indirectly promoted homosexual activities or failed to emphasize the value of abstaining from nonmarital sex and illegal drug use. Legislators softened the application of that amendment in conference by stipulating that the measure did not prohibit descriptions of methods to reduce the risk of HIV transmission. At a hearing held on June 8, 1988, by the Senate Subcommittee on Governmental Affairs, local health officials and representatives of community groups testified that the amendment had inhibited the preparation of AIDS education materials for particular populations, and Senator John Glenn of Ohio, the chairman of the subcommittee, reported that officials in five jurisdictions had described an actual or potential limiting effect on prevention efforts, while most jurisdictions responding to a survey from the subcommittee reported no effect.

The Senate completed action on May 16, 1990. The Senate agreed to the committee substitute, as amended, by voice vote, and the Senate then passed S. 2240, as amended, by a recorded vote of 95 to 4, Record Vote No. 97. Four senators voted against passage after a floor process in which the Senate had rejected amendments from Wallop and Helms, adopted amendments from Kennedy, Hatch, Mikulski, Nickles, and Coats, and recorded unanimous or near unanimous votes for the Kennedy conditions on needle distribution and blood safety. The Senate sent a message on Senate action to the House on May 21, 1990, and the House received S. 2240 on that date and held the bill at the desk.

Action in the House of Representatives

The House took up S. 2240 on June 13, 1990, under the provisions of H. Res. 408, a rule that a process summary of the measure described as a modified open rule. The House procedure preserved the Senate bill as the legislative vehicle while substituting the House text as the operative content. The House struck all after the enacting clause of S. 2240 and inserted in lieu thereof the provisions of H. R. 4785, the House measure that the Committee on Energy and Commerce had ordered reported on May 16, 1990. The House agreed to that substitution without objection, ordered the previous question pursuant to the rule, amended the title of the measure, and passed S. 2240 by voice vote. The House then laid H. R. 4785 on the table without objection, a step that retired the separate House bill because the House text had moved into the Senate vehicle. No recorded vote on House passage of S. 2240 appeared in the congressional record of June 13, 1990, and the official action list for S. 2240 recorded House passage by voice vote.

Floor consideration of the House measure included a recorded contest over an amendment offered by Representative William Dannemeyer of California. A process summary of the House consideration recorded that a substitute amendment offered by Representative J. Roy Rowland of Georgia to the Dannemeyer amendment passed by a vote of 311 to 113. The Rowland substitute therefore displaced the Dannemeyer text as the position of the House on the subject of that amendment before the House completed action on the bill, and the final question on passage of S. 2240 itself was decided by voice vote rather than by a recorded division.

Waxman managed the procedural steps that carried the House position into conference. On June 13, 1990, after passage, Waxman moved that the House insist upon the House amendments and request a conference with the Senate, and the House agreed to that motion without objection. On June 14, 1990, the chair appointed Representatives John Dingell of Michigan, Waxman, Rowland, Norman Lent of New York, and Edward Madigan of Illinois as House conferees. The Senate received the message on House action on June 14, 1990, and held the House amendments at the desk. On June 18, 1990, the Senate disagreed to the House amendments by voice vote, and that disagreement completed the formal exchange that placed the differences between the two texts before a committee of conference.

Conference, Presentation, and Signature

The committee of conference reconciled a Senate text centered on emergency relief grants, state grants, early intervention, and services for children, women, and families with a House text that had joined preventive services to the same grant structure under a different short title. The conferees agreed to file a conference report on July 31, 1990, and the conference report, H. Rept. 101-652, was filed in the House on that date, filed late pursuant to a previous special order. Both chambers acted on the report on a single day. On August 4, 1990, the House agreed to the conference report by voice vote, and the House agreed without objection to a motion to recede from the House amendment to the title. The Senate agreed to the conference report by voice vote on August 4, 1990. The double voice vote adoption meant that the recorded Senate vote of May 16, 1990, stood as the only recorded vote on passage in either chamber across the full sequence of actions on S. 2240.

Enrollment and presentation followed the August 4, 1990, adoption. The bill was presented to President George H. W. Bush on August 14, 1990, ten days after the conference report adoption and four days before signature. Bush signed the bill on August 18, 1990. The measure became Public Law 101-381, and the Statutes at Large citation was 104 Stat. 576. The act amended the Public Health Service Act and took effect as Title XXVI of that act, and Section 1 of the enrolled act provided the short title of the Ryan White Comprehensive AIDS Resources Emergency Act of 1990.

The signature of August 18, 1990, followed a period of stated administration reservations about the design of the legislation. A summary of the legislative history prepared from Congressional Quarterly reporting noted that the administration had threatened a veto of the measure. The administration stated opposition to the narrow disease-specific approach taken by the architects of the House bill, H. R. 4785, according to an account of the enactment that quoted that stated opposition. A 1993 account of the legislative campaign, summarized in later scholarship, reported that Bush had objected that AIDS was receiving special treatment and that Bush signed the bill while anticipating a veto override. The arithmetic behind that anticipation appeared in the vote record itself. A presidential veto returns a bill to the chamber of origin, and an override requires a vote of two thirds of both chambers. The Senate had passed S. 2240 by 95 to 4, a margin that exceeded two thirds of the full Senate by 28 votes, and the House had adopted the conference report by voice vote without a recorded division that disclosed any bloc of opposition approaching one third of the House. Signature avoided a return of the bill to a Congress that had recorded 95 Senate votes for passage and had completed every subsequent action on the measure by voice vote or without objection.

The Emergency Purpose and the First Appropriation

Section 2 of the enacted act stated the purpose in language that carried the emergency framing of the short title into the operative statute. The purpose clause declared that the act aimed to provide emergency assistance to localities that are disproportionately affected by the human immunodeficiency virus epidemic and to make financial assistance available to states and other public or private nonprofit entities for the development, organization, coordination, and operation of more effective and cost efficient systems for the delivery of essential services to individuals and families with HIV disease. The grant titles that followed in Title XXVI of the Public Health Service Act tracked the division inside that clause, with emergency relief grants for eligible metropolitan areas on one side and state and categorical grant programs on the other side.

Authorization and appropriation diverged sharply in the first fiscal year, and process summaries of the measure noted that the appropriation supplied roughly one quarter of the amount authorized for fiscal 1991. Congress funded the act at 221 million dollars for fiscal 1991, according to a 1994 report by the Office of Inspector General of the Department of Health and Human Services, and the same report recorded funding of 276 million dollars for fiscal 1992 and 348 million dollars for fiscal 1993. The Health Resources and Services Administration within the Public Health Service administered the act, and administration of the first appropriation began with the fiscal year that opened on October 1, 1990, six weeks after signature. The grant programs enacted on August 18, 1990, therefore operated in the first year at a funding level well below the level that the authorization language had contemplated, and the distribution of the appropriated funds proceeded through the titles of the act.

The legislative path from March 6, 1990, to August 18, 1990, consumed 165 days and passed through a committee substitute, a renaming by floor amendment, recorded Senate votes numbered 92 through 97 in the Congressional Record, a House substitution of an entire companion text into the Senate vehicle, a conference report filed on July 31, 1990, and adoption of that report by voice vote in both chambers on August 4, 1990. The voice votes that carried the committee substitute, the title amendments, the House passage, the Senate disagreement to the House amendments, and the conference report left no numerical record, and the documentary trail of the enactment therefore combined precise counts for the contested questions with uncounted agreement for the steps that moved the bill between chambers and to the desk of the President.

The Architecture of the Parts

Administration Inside the Department of Health and Human Services

The Ryan White CARE Act of 1990, Public Law 101-381, placed the program inside Title XXVI of the Public Health Service Act, and administration of Title XXVI rested with the Health Resources and Services Administration, known as HRSA, inside the Department of Health and Human Services. Within HRSA, the HIV/AIDS Bureau carried responsibility for grant awards, program guidance, and oversight of recipients. HRSA set the terms of each grant program, while state agencies, chief elected officials, clinics, and community organizations delivered outpatient care, medications, case management, and support services.

The CARE Act created a discretionary grant program financed through annual appropriations, with each part funded as a separate line item, rather than an entitlement program under which an eligible individual held a statutory right to a defined benefit. Congress fixed the scale of the program year by year: the Consolidated Appropriations Act, 2016, Public Law 114-113, provided $2.323 billion for fiscal year 2016, divided among Parts A, B, C, D, and F. The Ryan White HIV/AIDS Treatment Extension Act of 2009, Public Law 111-87, authorized the program through September 30, 2013, and the Congressional Research Service recorded in March 2016 that the authorization had expired while Congress continued to appropriate funds.

A second administrative rule, the payer of last resort rule, disciplined every part, and the full treatment of that rule, including the eligibility screening that enforced the rule, appears in the payer of last resort section of this profile.

Part A Grants to Eligible Metropolitan Areas and Transitional Grant Areas

Part A, codified beginning at Section 2601 of the Public Health Service Act, directed emergency relief grants to the metropolitan jurisdictions carrying the largest cumulative AIDS burdens. An Eligible Metropolitan Area, or EMA, was a metropolitan area with a population of at least 50,000 and more than 2,000 reported cases of AIDS during the prior five years, with boundaries drawn from the Metropolitan Statistical Areas designated by the United States Census Bureau. An EMA lost eligibility after failing for three consecutive years to record both a cumulative total of more than 2,000 reported AIDS cases during the most recent five calendar years and a cumulative total of 3,000 or more living cases of AIDS as of December 31 of the most recent year. The grant was made to the chief elected official of the city or county in the area that administered the health agency providing services to the greatest number of persons with HIV, and that official distributed funds to provider organizations across the entire designated service area.

The Ryan White HIV/AIDS Treatment Modernization Act of 2006, Public Law 109-415, added a second tier by creating Transitional Grant Areas, or TGAs, for metropolitan areas below the EMA threshold. A TGA was a metropolitan area with a population of at least 50,000 and at least 1,000 but fewer than 2,000 cumulative reported cases of AIDS during the most recent five calendar years. A TGA retained eligibility until failure for three consecutive years on two tests, the cumulative case test and a floor of 1,500 or more living cases of AIDS as of December 31 of the most recent year. In fiscal year 2015, Part A grants reached 24 EMAs and 29 TGAs, for a total of 53 jurisdictions.

Two-thirds of a Part A appropriation moved through formula grants based on each area share of reported living cases of HIV and AIDS, and the remaining one-third moved through competitive supplemental grants awarded on the basis of demonstrated need and other statutory factors. The Extension Act of 2009 fixed one weighting factor for supplemental awards: success in testing for HIV and making individuals aware of HIV status counted for one-third of the determination. Public Law 109-415 rebased the formula on living cases of HIV and AIDS for states operating a name-based HIV reporting system. Beginning with fiscal year 2013, only living name-based cases of HIV and AIDS entered Part A grant determinations.

Planning Councils and Priority Setting Under Part A

Part A embedded a local priority-setting body inside the grant structure. The chief elected official receiving a Part A grant established an HIV Health Services Planning Council, and Section 2602(b)(1) of the Public Health Service Act required council membership to reflect the demographics of the population of individuals with HIV and AIDS in the eligible area. The councils assessed need across the service area, developed plans for the delivery of HIV care, and set the priorities that determined which service categories received funding and in what order. The council held priority-setting authority without grant administration authority: councils were barred from direct involvement in the administration of a Part A grant.

The Extension Act of 2009 required each Part A planning council to develop a strategy for identifying individuals with HIV or AIDS who did not know HIV status, making those individuals aware of that status, and connecting those individuals with health care and support services. Planning councils were mandatory for EMAs, while most TGAs carried no statutory obligation to maintain a council, and HRSA encouraged TGAs to maintain planning councils or planning bodies for the same priority-setting work.

Part B Grants to States and Territories

Part B, codified beginning at Section 2611 of the Public Health Service Act, distributed grants through state governments rather than metropolitan governments, and coverage extended to all 50 states, the District of Columbia, Puerto Rico, the United States Virgin Islands, Guam, and five jurisdictions in the Pacific. A state recipient used Part B funds for drug treatments, home and community-based health care, support services, and health insurance coverage for low-income persons. Congress divided the Part B appropriation before any formula operated: a specific appropriation for the AIDS Drug Assistance Program sat inside the total Part B funding, and the remaining non-ADAP funds financed base grants and a supplemental grant program.

Of the non-ADAP Part B funds, two-thirds financed base awards and one-third was reserved for the supplemental grant program under Section 2623(b)(2) of the Public Health Service Act. Within a base award, 75 percent rested on the state proportion of HIV and AIDS cases nationwide, 20 percent rested on the state proportion of HIV and AIDS cases located outside Part A funded areas, and 5 percent rested on the state proportion of HIV and AIDS cases in states with no Part A funding. The measurement base changed in 2006: Public Law 109-415 substituted living cases of HIV and AIDS for states with name-based reporting, and beginning with fiscal year 2013 only living name-based cases of HIV and AIDS entered Part B grant determinations.

A state qualified for a Part B supplemental grant by demonstrating need for supplemental financial assistance, and priority went to states with a decline in Part B funding caused by changes in the distribution formula. Supplemental grant funds were restricted to core medical services. A separate set-aside addressed metropolitan areas below the TGA threshold: an emerging community was a metropolitan area with a cumulative total of at least 500 and fewer than 1,000 reported cases of AIDS during the most recent five calendar years, grant amounts rested on the amount set aside by the Secretary, authorized at $5 million, and on each state share of living cases of HIV and AIDS in emerging communities nationwide.

State matching requirements attached to Part B for states with the largest caseloads. Section 2617(d) of the Public Health Service Act required a state or territory that had reported to the Centers for Disease Control and Prevention more than 1 percent of total United States HIV cases in the two most recent fiscal years to make available nonfederal cash or in-kind resources matching the Part B funding received in the base, AIDS Drug Assistance Program base, and emerging communities components of the award. The required rate rose with the number of years a recipient met the 1 percent threshold, beginning at 20 percent in the first year and rising through 25 percent and 33 percent to 50 percent in the fourth year and thereafter, expressed in the HRSA Part B manual as a progression from $1 of nonfederal resources for every $5 of federal funds to $1 for every $2. The match applied to the amount of federal funding awarded rather than the amount expended, the requirement excluded the supplemental and Minority AIDS Initiative components of the Part B award, and the statute excluded the Commonwealth of Puerto Rico from state match requirements.

The AIDS Drug Assistance Program Inside Part B

The AIDS Drug Assistance Program, or ADAP, occupied a designated place inside Part B rather than a separate part of Title XXVI. Congress earmarked a portion of the Part B appropriation for ADAP, and HRSA distributed ADAP funds to states and territories by a formula based on each state proportion of living cases of HIV and AIDS, on the same living name-based case counts that governed Part B determinations from fiscal year 2013. Five percent of the ADAP appropriation was set aside for ADAP supplemental grants reserved for states demonstrating severe need for increased availability of HIV and AIDS drugs. The full treatment of ADAP financing, formularies, discounts, and waiting lists appears in the drug assistance section of this profile.

Part C Early Intervention Services and Direct Grants to Providers

Part C, codified beginning at Section 2651 of the Public Health Service Act, changed the recipient. Parts A and B funded intermediaries, a metropolitan government or a state government, and the intermediary then financed and coordinated a network of providers. Part C funded the provider directly: HRSA made Early Intervention Services grants to public and nonprofit clinics and community health centers, and the grant relationship ran between the federal agency and the organization delivering care, without a state or metropolitan pass-through. Part C grants reached facilities in 49 states, Puerto Rico, the District of Columbia, and the United States Virgin Islands, and eligible facilities included federally qualified health centers, family planning clinics, hemophilia treatment centers, rural health clinics, Indian Health Service facilities, and community-based organizations providing early intervention services to people infected with HIV through intravenous drug use.

The services financed at the clinic level centered on comprehensive outpatient primary care for low-income, medically underserved people with HIV, including counseling, HIV testing, referrals, clinical and diagnostic services, drug treatments, treatment adherence support, oral health care, mental health services, substance abuse services, and support services that kept a client connected to primary care. Two spending floors structured each grant: 75 percent of a Part C grant was required to fund core medical services, and not less than 50 percent of a grant was required to fund early intervention services, the cluster of testing, counseling, referral, and clinical entry services that brought a person with HIV into a continuing course of outpatient care.

Part D Services for Women, Infants, Children, and Youth

Part D, codified beginning at Section 2671 of the Public Health Service Act, organized grants around a population rather than a geography or a provider type. Grants went to public and nonprofit entities, including state and local governments, tribes and tribal organizations, and faith-based and community-based organizations that provided primary medical care to women, infants, children, and youth with HIV. The statutory model was family-centered and community-based care: a Part D recipient supplied outpatient and ambulatory health care, case management, referrals, and other services that enabled participation in the program, including services designed to recruit and retain youth with HIV, and support services extended to affected family members of a person with HIV. Recipients were required to coordinate with programs promoting the reduction and elimination of risk of HIV for youth.

In 2014, approximately 67 percent of Part D programs received dual funding under Part C, and the Obama Administration budget requests for fiscal year 2015 and fiscal year 2016 proposed consolidating Part D into Part C. The House of Representatives and the Senate rejected the consolidation proposal in fiscal year 2015 and in fiscal year 2016.

Part F Demonstration, Training, and Dental Programs

Part F, codified beginning at Section 2691 of the Public Health Service Act, grouped programs that trained providers, tested service models, and financed dental care rather than financing a general system of care for a jurisdiction or a population. The Special Projects of National Significance program, or SPNS, awarded competitive grants to entities eligible for funding under Parts A, B, C, and D to develop and evaluate innovative models of HIV care and treatment, with attention to underserved populations and to models with potential for replication in other settings. Under the statute, SPNS was funded, up to $25 million, from amounts appropriated for Parts A, B, C, and D.

The AIDS Education and Training Centers program, or AETC program, financed specialized clinical education and consultation for health care providers on HIV transmission, treatment, and prevention. The AETC network rested on competitive grants, cooperative agreements, and contracts supporting 11 regional centers and more than 130 locally associated sites. The Dental Reimbursement Program reimbursed accredited dental schools, postdoctoral dental education programs, and dental hygiene education programs for uncompensated costs incurred in providing oral health treatment to patients with HIV. The Community-Based Dental Partnership Program awarded grants to partnerships of dental education programs and community-based organizations, financing oral health services in community settings in underserved areas while training students and residents enrolled in accredited dental education programs.

Cross-Cutting Allocation Rules Across the Parts

Counts of people living with HIV and AIDS formed the common currency of allocation across Parts A and B. The Centers for Disease Control and Prevention collected the HIV case surveillance data used in the formulas, and the 2006 reauthorization shifted the currency from estimated living AIDS cases to living cases of HIV and AIDS counted through name-based reporting, after a statutory transition for states with code-based reporting systems adopted for privacy protection. Metropolitan eligibility under Part A rested on cumulative reported AIDS cases during a five-year window, while award amounts rested on living cases.

Hold-harmless protections softened the arithmetic. A hold-harmless provision guaranteed that a recipient formula grant fell no lower than a specified percentage of the grant received in a base year defined in the statute, with the protected percentage declining on a schedule fixed in the legislation. The Part B base award formula and the ADAP award formula each carried a hold-harmless provision declining annually on the statutory schedule.

Public Law 109-415 required recipients under Parts A, B, and C to spend at least 75 percent of grant funds on core medical services and permitted no more than 25 percent to fund support services. Core medical services under Title XXVI comprised outpatient and ambulatory health services, AIDS Drug Assistance Program treatments and local pharmaceutical assistance, oral health care, early intervention services, health insurance premium and cost-sharing assistance, home health care, medical nutrition therapy, hospice services, home and community-based health services, mental health services, substance abuse outpatient services, and medical case management, including treatment adherence services. Support services comprised outreach, medical transportation, language services, respite care for persons caring for individuals with HIV, referrals for health care and support services, and support services were required to contribute to positive clinical outcomes.

Minority AIDS Initiative funding cut across the part structure from a statutory home inside Part F. Public Law 109-415 codified the Minority AIDS Initiative as part of the Ryan White program under Part F of Title XXVI, and the initiative financed competitive grants through Parts A, B, C, and D, and through the Part F AIDS Education and Training Centers, to evaluate and address the disproportionate impact of HIV and AIDS on racial and ethnic minorities. The Extension Act of 2009 directed HRSA to develop a formula for awarding Minority AIDS Initiative grants under Part A and Part B that ensured funding followed the distribution of populations disproportionately affected by HIV and AIDS. A Government Accountability Office report delivered within one year of enactment of Public Law 111-87 found that Minority AIDS Initiative recipients provided mostly support services, alongside core HIV services, and found that separate administrative requirements across multiple funding streams created administrative challenges and duplicative application and reporting requirements for recipients.

The parts and flows table sets out, in one place, the recipient, the purpose, the administrator, and the operation of the payer of last resort rule for each part of Title XXVI, including the drug assistance earmark inside Part B.

Part	Who receives the money	What it funds	Who administers it	How the payer of last resort rule applies
Part A	The chief elected official of an eligible metropolitan area or transitional grant area, for distribution to providers across the service area	Emergency relief for outpatient care, medications, case management, and support services in the metropolitan areas carrying the largest burdens	HRSA at the federal level, with a local planning council setting service priorities	Grant funds pay only after Medicaid, Medicare, private insurance, and other payers have paid or have been shown unable to pay
Part B	State and territorial governments	Base grants for care systems, drug treatments, home and community based services, and insurance continuation	HRSA at the federal level and the state health agency in each state	State recipients screen clients for other coverage and bill other payers before grant funds pay a claim
Part B ADAP	State and territorial governments under a designated earmark inside the Part B appropriation	HIV medications for low income clients with limited or no prescription coverage, and insurance purchasing for eligible clients	HRSA at the federal level and the state ADAP in each state	ADAP pays for drugs only where private insurance, Medicaid, or Medicare Part D coverage is absent, exhausted, or inadequate
Part C	Public and nonprofit clinics and community health centers, funded directly	Early intervention services and comprehensive outpatient primary care for low income, medically underserved people with HIV	HRSA, through a direct grant relationship with the provider organization	The clinic bills third party payers first and applies grant funds to services that no other payer covers
Part D	Public and nonprofit entities serving women, infants, children, and youth	Family centered primary medical care, case management, referrals, and support for affected family members	HRSA at the federal level and the funded entity at the point of care	Grant funds cover services for eligible family members only to the extent that another payer has not paid and cannot reasonably be expected to pay
Part F	Entities eligible under the other parts, dental schools, training centers, and community partnerships	Demonstration projects, provider training, dental reimbursement, and the Minority AIDS Initiative	HRSA, through competitive grants, cooperative agreements, and contracts	Funded projects and services remain subject to the same prohibition on paying where another payer has paid or can reasonably be expected to pay

That architecture rested on an ordering rule that determined, for every service in every part, which dollar paid first and which dollar paid last.

Payer of Last Resort

The Statutory Prohibition

The Ryan White CARE Act of 1990, Public Law 101-381, placed a single ordering rule at the center of the program design. Program funds sat behind every other payer. The statutory text for Part A, at section 2605(a)(6) of the Public Health Service Act, codified within 42 U.S.C. 300ff, barred the use of grant funds to make payments for any item or service to the extent that payment had been made, or could reasonably be expected to be made, under a state compensation program, an insurance policy, a federal or state health benefits program, or an entity that provided health services on a prepaid basis. Parallel assurances appeared for Part B at section 2617(b)(7)(F) and for other parts at sections 2664(f) and 2671(i), as the Health Resources and Services Administration, or HRSA, catalogued in Policy Notice 07-04. The same provisions excepted programs administered by or providing the services of the Indian Health Service, and HRSA guidance protected veterans from denial based on Department of Veterans Affairs eligibility.

The prohibition reached expectation as well as completed payment. A service that another payer could reasonably be expected to cover fell outside the grant even before a claim had been filed, denied, or paid. A joint HRSA and Centers for Medicare and Medicaid Services informational bulletin issued in 2013 stated the operational consequence. By statute, the bulletin explained, Ryan White funds could not be used for any item or service for which payment had been made, or could reasonably be expected to be made, by any other payer. The same bulletin required grantees to assess every client for eligibility for other payers at least every six months and to use effective strategies to coordinate with third party payers, including Medicaid.

Administration of the rule took the form of an audit repeated across the life of each client record. Providers verified insurance status at intake, screened each client against Medicaid eligibility, private insurance, Medicare, and the State Children Health Insurance Program, and documented the search before grant funds paid a claim. Congressional Research Service report R44282 stated the matching duty: seek payment from other sources first, assess eligibility for other funding consistently, and pursue enrollment vigorously. Where grant funding and third party reimbursement could both cover a service, the provider had to bill and collect from the third party payer first. Grant funds paid while a Medicaid determination remained unresolved, and the provider then back billed Medicaid for the retroactive enrollment period once eligibility was established. The finding expired as coverage changed, which explains the six month reassessment cycle. Loss of employment, a Medicaid disability determination, purchase of marketplace coverage, and exhaustion of a benefit limit each reopened the question and redirected the next dollar of service cost toward the grant or away from the grant.

A Complement to Insurance Rather Than a Substitute

The ordering rule defined the program as a structural complement to insurance rather than a substitute for insurance. The benefit existed only in the space left by Medicaid, Medicare, employer sponsored coverage, individual market coverage, and state programs, and the shape of that space changed whenever any of those payers changed eligibility rules, benefit packages, provider networks, or cost sharing schedules. An expansion of Medicaid eligibility transferred service costs off the grant and onto an entitlement financed under a different authority, and a contraction of private coverage or a benefit cap transferred costs in the reverse direction without any amendment to the Ryan White statute itself.

The wrap around character of the design followed from the same rule. For an insured client, the grant did not duplicate the policy. The grant paid for the uncovered service, the support that made use of the policy possible, or the premium that kept the policy in force under the cost effectiveness conditions described below. For an uninsured client with no payer in front of the grant, the same scheme funded direct care. Caseload and cost inherited that variability. Demand for grant funded medical care rose when insurance coverage receded and fell when coverage advanced, while demand for support services followed a slower pattern tied to poverty, housing instability, and the requirements of sustained treatment. Congress funded the program through annual discretionary appropriations rather than an open ended entitlement formula, and the appropriation had to absorb swings in demand generated by state Medicaid agencies, insurance markets, and employer benefit offices that the Ryan White statute did not control.

Eligibility Without an Entitlement

Eligibility rested on three findings. The person had HIV infection. The person had low income under a threshold set by the grantee. The person was uninsured or underinsured, meaning that available coverage, where coverage existed, did not pay for the needed service or did not pay enough to make the service accessible. HRSA grant announcements issued before September 2018 used the same low income, uninsured, and underinsured formulation. The statute imposed no single national income ceiling. Congress left the threshold to states, eligible metropolitan areas, and other grantees, and grantees set different ceilings for different service categories within the same state.

State program documents from the period before September 2018 placed common ceilings inside a band between 300 percent and 500 percent of the federal poverty level. North Carolina program documentation described AIDS Drug Assistance Program eligibility at incomes at or below 300 percent of the federal poverty level. Georgia Part B policy documents in the 2018 edition set the ceiling at or below 400 percent of the federal poverty level. Delaware and California program documentation in the same period set ceilings at up to 500 percent and at less than 500 percent of the federal poverty level respectively. The spread between 300 percent and 500 percent meant that a person with income at 350 percent of the federal poverty level qualified for drug assistance in one state and failed the income test in another.

A separate statutory schedule limited charges rather than eligibility. Under the imposition of charges provisions applied across the parts, a provider could impose no charge on a person with income at or below 100 percent of the federal poverty level. Annual charges were capped at 5 percent of annual gross income for income above 100 percent and at or below 200 percent of the federal poverty level, at 7 percent for income above 200 percent and at or below 300 percent, and at 10 percent for income above 300 percent. A person unable to pay could not be denied services on that ground.

No individual entitlement accompanied eligibility. The program operated as a discretionary grant program financed by annual appropriations, and satisfaction of the HIV, income, and coverage tests gave a person access only to the extent that a funded grantee operated in the area of residence, offered the needed service category, and held unspent funds sufficient to pay. The Kaiser Family Foundation, in the Ryan White program basics fact sheet prepared before September 2018, recorded that authorization lapsed in fiscal year 2013 and that the program continued through annual appropriations because the legislation carried no sunset provision. KFF Health News reported in 2011 that more than 8,300 people sat on waiting lists in 13 states for antiretroviral and other medications, and that several states had tightened income eligibility or reduced program scope instead of maintaining a formal waiting list. Grantees also required proof of HIV diagnosis, residence, and income, with recertification tied to the six month payer screening cycle.

Services That Insurance Leaves Uncovered or Covers Thinly

HRSA Policy Clarification Notice 16-02, issued in December 2016, defined eligible individuals and allowable uses of funds across the program parts. The notice divided allowable services into core medical services and support services. Core medical services under the 2016 notice comprised AIDS Drug Assistance Program treatments, AIDS pharmaceutical assistance, early intervention services, health insurance premium and cost sharing assistance for low income individuals, home and community based health services, home health care, hospice services, medical case management including treatment adherence services, medical nutrition therapy, mental health services, oral health care, outpatient and ambulatory health services, and substance abuse outpatient care. The 75 percent core medical services requirement set out in the architecture section of this profile governed that division, and the remaining share funded support services.

Several core categories filled gaps that standard insurance benefits handled badly. Oral health care stood as a core service because dental coverage sat outside the standard medical benefit in much of the private market and outside the mandatory Medicaid benefit for adults. Mental health services and substance abuse outpatient care stood as core services because behavioral health benefits operated under visit limits, network restrictions, and authorization practices that interrupted treatment for conditions that also governed adherence to antiretroviral therapy. Medical case management, including treatment adherence services, paid for a coordination function that fee for service insurance reimbursed poorly or not at all, namely assessment of client needs, development of a service plan, linkage to services, and monitoring of retention in care.

Support services under Policy Clarification Notice 16-02 addressed the conditions that determined whether medical treatment occurred at all. The 2016 list comprised child care services, emergency financial assistance, food bank and home delivered meals, health education and risk reduction, housing services, linguistic services, medical transportation, non-medical case management services, other professional services including legal services, outreach services, psychosocial support services, referral for health care and support services, rehabilitation services, respite care, and substance abuse services in residential settings. HRSA defined support services as services needed to achieve outcomes affecting the HIV related clinical status of a person with HIV, and grantees funded a support service because the service removed a documented barrier to initiation or retention of medical care. Federal Register policy published on May 12, 2011, confined Ryan White housing expenditures to housing referral services and to short term or emergency housing necessary to gain or maintain access to medical care. Assistance had to be transitional and accompanied by a strategy for movement to a long term, stable living situation. Housing funds could not take the form of direct cash payments and could not pay mortgage costs. Medical transportation paid for nonemergency travel to core medical and support services through vouchers, tokens, contracted providers, or mileage reimbursement. Linguistic services paid for interpretation and translation between provider and client. The HRSA Ryan White HIV/AIDS Program Annual Client Level Data Report for 2016 described the combined catalogue as public health infrastructure that supported early diagnosis, linkage to care, retention in care, medically appropriate treatment, and sustained viral suppression.

Premium and Cost Sharing Assistance as Insurance Continuation

One core medical category reversed the apparent direction of the payer of last resort rule. Health insurance premium and cost sharing assistance authorized program funds to pay health insurance premiums, deductibles, and copayments on behalf of eligible clients, including premiums for stand alone dental insurance that provided comprehensive oral health care. Payment moved grant money into the insurance system rather than away from the insurance system. The statutory basis sat in section 2615 of the Public Health Service Act, on continuum of health insurance coverage, and in section 2616(f) for the AIDS Drug Assistance Program, which allowed purchase or maintenance of plans covering a full range of therapeutics and appropriate primary care services.

A cost effectiveness condition disciplined the authority. Policy Clarification Notice 16-02 required a recipient that used program funds for premium assistance to apply a methodology under which the client obtained coverage that included at least one United States Food and Drug Administration approved medicine in each drug class of core antiretroviral medicines described in Department of Health and Human Services clinical guidelines, together with appropriate outpatient and ambulatory health services. The methodology also required a finding that the cost of paying for the coverage, counting all other sources of premium and cost sharing assistance, was cost effective in the aggregate against paying the full cost of medications and other appropriate HIV outpatient and ambulatory health services directly. The authority applied only to the extent that the cost of the insurance or plan to be purchased or maintained for the fiscal year did not exceed the cost of otherwise providing the therapeutics.

The condition converted the payer of last resort rule into an insurance continuation device. Where a client held employer sponsored coverage, COBRA coverage after loss of employment, Medicare Part D coverage, or an individual market policy with an adequate formulary, a premium payment that cost the program less than direct purchase of the same medications preserved the entire insurance relationship. Termination of the policy for nonpayment would have destroyed that coverage and returned the full cost of HIV care to the grant or to the client. The AIDS Drug Assistance Program use of the same premium payment mechanism receives separate treatment in another section of the profile.

Coverage Expansion and the Uneven Geography of Need

The Affordable Care Act coverage expansions that took effect in 2014 subjected the payer of last resort design to a large natural test. Medicaid expansion extended eligibility to low income adults with incomes up to 133 percent of the federal poverty level, with a 5 percent income disregard that produced an effective threshold of 138 percent, in states that adopted the expansion after the Supreme Court decision of 2012 made adoption optional. Marketplace coverage with premium tax credits and cost sharing reductions opened a subsidized private coverage route for people with incomes above the Medicaid threshold.

The Kaiser Family Foundation, working with researchers at the Centers for Disease Control and Prevention, published the anticipatory arithmetic in January 2014. Close to 70,000 uninsured people with HIV who were in care could gain new coverage. Of that group, almost 47,000 could gain coverage through Medicaid if all states expanded, and almost 23,000 could gain coverage through the marketplaces, most with financial assistance. State decisions against expansion reduced the projected Medicaid gain by more than 15,000 people, and 17,980 people remained ineligible for both Medicaid and marketplace assistance. The January 2014 brief identified the Ryan White program as the continuing source of care for the group left outside the expansions.

Measurement after implementation preserved the geographic split. The Kaiser Family Foundation analysis of February 2017, based on Centers for Disease Control and Prevention Medical Monitoring Project data, found that Medicaid coverage among people with HIV in care rose by six percentage points nationwide between 2012 and 2014. The increase concentrated in expansion states, where Medicaid coverage rose from 39 percent in 2012 to 51 percent in 2014 and the uninsured share fell from 13 percent to 7 percent. In non-expansion states, the analysis found no significant gain in coverage and no significant drop in the uninsured share between 2012 and 2014.

The same February 2017 analysis contradicted any expectation that coverage expansion would shrink reliance on the Ryan White program in proportion to the coverage gain. Nationwide, the share of people with HIV in care who relied on the program rose from 42 percent in 2012 to 48 percent in 2014. Reliance among people with private insurance rose from 23 percent in 2012 to 38 percent in 2014, and reliance among people with Medicaid rose from 31 percent in 2012 to 38 percent in 2014. About nine in ten uninsured people with HIV in care had program support in 2012, and the uninsured group recorded no significant change in reliance. In non-expansion states, overall reliance rose from 42 percent in 2012 to 55 percent in 2014, and reliance among people with private insurance in non-expansion states rose from 17 percent to 38 percent.

The pattern had a mechanical explanation inside the service catalogue. Medicaid and marketplace coverage paid for outpatient visits and prescriptions that the grant had previously financed directly for uninsured clients in expansion states, which contracted the direct care function of the grant in those states. Neither payer supplied medical transportation as a routine HIV support, food bank services, linguistic services at the scale authorized by Policy Clarification Notice 16-02, non-medical case management aimed at benefits navigation and retention, or short term housing assistance tied to treatment access, in the form that the grant supplied. In non-expansion states, adults with income below the marketplace subsidy floor and outside traditional Medicaid categories had no coverage route to substitute, and the grant retained the primary payer function for direct care as well as the support function, which accounts for the rise in reliance to 55 percent. The payer of last resort rule produced both outcomes without amendment, because the rule indexed program responsibility to the coverage decisions of other payers. The statute of 1990 had built that indexation into the definition of the benefit, and the coverage events of 2014 measured the sensitivity of the design.

The ordering rule met a harder test in the one benefit where delay carried a clinical price measured in viral replication: the drug benefit financed through Part B.

The Drug Assistance Program and Its Waiting Lists

A State Program Built on a Federal Earmark

The AIDS Drug Assistance Program, called ADAP, supplied HIV related prescription drugs to low income people with HIV who held limited prescription drug coverage or none at all. The Kaiser Family Foundation, in an August 2017 fact sheet, traced the origin to 1987, when Congress first appropriated funds to help states purchase AZT, described in that fact sheet as the only approved antiretroviral drug at that time. The Ryan White CARE Act of 1990 absorbed that purchasing effort into a statutory program, and, according to the same fact sheet, Congress specifically earmarked funding for ADAPs through Part B beginning in fiscal year 1996, with the earmark allocated by formula to states. Administration remained with the states. The fact sheet recorded that all states, the District of Columbia, and other United States territories received federal ADAP earmark funding through Part B, and that each state operated a separate ADAP, determining eligibility criteria and other program elements such as formularies, with significant variation across the country as the result. States contributed funds of their own in amounts that varied widely, and the Kaiser Family Foundation reported that state funding accounted for 6 percent of the national ADAP budget in fiscal year 2016, against a total national budget of 2.02 billion dollars from all sources in that year.

The Formulary Floor in the Statute

State discretion over formularies operated above a federal floor. The Health Resources and Services Administration, in the Ryan White HIV/AIDS Program ADAP Manual, quoted section 2616(c) of the Public Health Service Act, codified at 42 U.S.C. 300ff-26(c). Under that provision, a state had to ensure that the therapeutics included on the list of classes of core antiretroviral therapeutics established by the Secretary were, at a minimum, the treatments provided by the state under the section, and the state had to provide assistance for the purchase of treatments determined eligible under that paragraph, together with ancillary devices essential to administer such treatments. The manual translated the statutory language into operational requirements. An ADAP formulary had to include at least one drug from each class of HIV antiretroviral medications. ADAP funds could purchase only medications approved by the Food and Drug Administration and the devices needed to administer them. The formulary had to remain consistent with the treatment guidelines issued by the Department of Health and Human Services, and every treatment on the formulary had to be equally and consistently available to all eligible enrolled individuals throughout the state or territory. In 2016, according to Kaiser Family Foundation reporting of National Alliance of State and Territorial AIDS Directors data, ADAP formularies covered between 37 and all 45 identified antiretroviral drugs, with 27 states covering all 45.

The Discount That Stretched the Appropriation

A second federal mechanism determined how far each appropriated dollar traveled. The Kaiser Family Foundation fact sheet of August 2017 stated that all ADAPs participated in the 340B Drug Pricing Program, enabling the programs to purchase drugs at or below the statutorily defined 340B ceiling price. The 340B program, administered by the Health Resources and Services Administration, required participating manufacturers to sell covered outpatient drugs to enrolled covered entities at discounted prices, and state ADAPs qualified as covered entities through the Ryan White program. The Health Resources and Services Administration described two principal routes in the ADAP Manual. An ADAP registered as a 340B covered entity could secure 340B pricing through a point of purchase discount, called direct purchase, through a pharmacy network or rebate model, or through a combination of the two. Under direct purchase, the program or a contract pharmacy bought the drug at the discounted price at the outset. Under the rebate model, the program paid a retail pharmacy for the drug and afterward claimed a rebate from the manufacturer for the difference between the price paid and the 340B price.

The scale of the rebate route altered the composition of the entire ADAP budget. The Kaiser Family Foundation reported that drug rebates accounted for 40 percent of the overall ADAP budget in fiscal year 2016, a share that placed rebates ahead of the federal ADAP earmark, which accounted for 39 percent in that year. Rebates received on drugs purchased with grant funds carried a statutory condition: section 2616(g) of the Public Health Service Act required that such rebates be applied to activities supported under Part B, with priority given to ADAP activities.

Combination Therapy Transformed the Benefit

The benefit that ADAP delivered changed character during the 1990s. In 1987, AZT stood as the only approved antiretroviral, and early state purchasing centered on that single drug and a small set of medications for opportunistic infections. The arrival of protease inhibitors and combination antiretroviral therapy in 1996 altered both the clinical value and the cost structure of the program. Reporting on the ADAP crisis published by TheBodyPro in 2011 stated that the programs were overwhelmed by demand when highly active antiretroviral therapy was introduced in 1996, and that the treatment breakthrough and the resulting increase in costs had not been anticipated during the federal budget process for that year. Combination therapy combined drugs from multiple classes in regimens that suppressed viral replication far more effectively than single drug treatment, and the regimen became the standard of care that the treatment guidelines recommended and that the statutory formulary floor required ADAPs to supply. A program designed to purchase one drug for a limited population became the delivery mechanism for multi drug regimens taken continuously by every enrolled client for life.

Demand and per client cost rose together. People with HIV who received effective combination therapy lived longer, remained in treatment longer, and accumulated in enrollment rather than leaving the program through death. New diagnoses added entrants while effective therapy reduced exits. The ADAP Crisis Task Force, formed in 2003 by a group of state AIDS directors and ADAP coordinators, negotiated lower prices and larger rebates with the drug industry, and TheBodyPro reported in 2011 that the negotiations produced more than 1 billion dollars in savings for ADAPs over the seven years preceding that report. State contributions also rose, almost doubling from 171 million dollars in 2003 to 328 million dollars in 2008, according to the same 2011 account.

Cost Containment Before the Queue

When demand exceeded the capped appropriation, state programs reached first for administrative instruments that restricted the benefit without formally refusing an eligible applicant. The National Alliance of State and Territorial AIDS Directors, in the ADAP Watch reports issued during the crisis period, cataloged the instruments. States lowered financial eligibility thresholds, in several cases from 500 percent of the federal poverty level to 300 percent or 200 percent, reduced formularies, capped enrollment, and imposed medical criteria that prioritized applicants with lower CD4 counts. The Kaiser Family Foundation, in a December 2004 analysis titled Waiting for AIDS Medications in the United States, explained the structural basis for the measures. ADAPs were discretionary grant funded programs with capped funding each year, the analysis stated, and funding did not necessarily correspond to the number of people who needed services or to the costs of those services. The waiting list stood at the end of that sequence, used when eligibility cuts, formulary cuts, and enrollment caps failed to close the gap between eligible demand and available funds.

South Carolina and the Deaths Reported in Connection With a Waiting List

The human consequence of the queue entered national reporting in the autumn of 2006 through South Carolina. The Kaiser Daily HIV/AIDS Report of November 7, 2006, summarized by TheBodyPro, reported that the Title II Community AIDS National Network, an HIV advocacy organization, called for an emergency increase in federal funds for ADAP after the deaths of three people with HIV who had been on the waiting list of the South Carolina program. According to the advocacy organization, more than 200 South Carolina residents stood on the state waiting list at that time, about 1,800 people with HIV were enrolled in the state ADAP, and the South Carolina list was the longest in the country. The same report, citing Lynda Kettinger of the state Department of Health and Environmental Control, stated that the waiting list was growing by eight to twelve people each week.

Attribution matters in describing those deaths. The reporting established that three people died while their names stood on a waiting list for a program that would have paid for antiretroviral treatment, and advocacy organizations attributed the deaths to the delay in treatment that the list represented.

The Recession Era Peak

Waiting lists returned on a national scale after 2008, driven by forces that the National Alliance of State and Territorial AIDS Directors documented in the ADAP Watch of August 12, 2011. ADAPs reporting the factors behind cost containment in that period cited level federal funding awards, higher demand as a result of increased unemployment, increased demand arising from expanded HIV testing efforts, escalating drug costs, and decreases in state general funding. Florida began a waiting list in June 2010, Georgia in July 2010, and Louisiana in June 2010, and the August 2011 ADAP Watch recorded 9,217 individuals on waiting lists in 12 states as of August 11, 2011, with Florida alone accounting for 3,792 of the total.

The peak arrived weeks later. The Kaiser Family Foundation, in the August 2017 fact sheet, stated that waiting lists peaked in September 2011, when 9,298 individuals in 11 states were eligible for ADAPs yet unable to access medications. A National Alliance of State and Territorial AIDS Directors update issued in July 2012 confirmed the same figure, reporting that the total had decreased 78 percent since a high of 9,298 individuals on September 1, 2011. In the September 16, 2011 ADAP Watch, Florida held 4,175 people on a waiting list, Georgia held 1,709, Louisiana held 1,087, and Virginia held 974, so that the national queue consisted largely of eligible residents of a small number of states whose appropriations, state contributions, and rebate income together failed to cover eligible demand.

Emergency Allocations and the Clearing of the Lists

The federal response combined three channels. The first channel was emergency grant funding administered by the Health Resources and Services Administration. The agency stated, in the funding notice for the ADAP Emergency Relief Funds, that HRSA first funded the emergency relief initiative in August 2010, when numerous states and territories were experiencing ADAP waiting lists, and that the awards served states that demonstrated a need for additional resources to prevent, reduce, or eliminate waiting lists. The Kaiser Family Foundation, in a federal funding analysis accompanying the fiscal year 2016 budget request, itemized the emergency amounts inside the ADAP totals. ADAP funding in fiscal year 2010 included 25 million dollars in emergency funds provided as new competitive grant funding to address waiting lists and cost containment measures. The Kaiser Family Foundation analysis placed the emergency component at 40 million dollars within the fiscal year 2011 ADAP total of 885 million dollars and at 75 million dollars within the fiscal year 2012 total of 933.3 million dollars.

The second channel was executive reprogramming. On World AIDS Day in December 2011, President Barack Obama announced a transfer of 35 million dollars from other Department of Health and Human Services accounts to ADAP, at a moment when the White House placed the national waiting list total at more than 6,500 people. The administration repeated the transfer in 2013, again moving 35 million dollars to ADAP after Congress omitted continuation of the emergency amount from the fiscal year 2013 continuing resolution, and administration statements credited the emergency funding, together with contributions from pharmaceutical companies, with reducing waiting lists to fewer than 200 people by that point. The Kaiser Family Foundation summarized the result in the August 2017 fact sheet. Waiting lists had been eliminated, the fact sheet stated, as a result of an influx of reprogrammed Ryan White funding and separate emergency funding between 2010 and 2013, assisted in some cases by higher rebates and by stricter state cost containment measures. The Health Resources and Services Administration, in the Emergency Relief Funds funding notice dated September 13, 2017, recorded the endpoint in plain administrative language: at the time of publication of the notice, there were no ADAP waiting lists.

Insurance Purchasing as a Cost Strategy

A structural adaptation survived the crisis and changed how ADAP dollars bought treatment. States held authority to spend ADAP funds on health insurance for clients, paying premiums, deductibles, and copayments to purchase or maintain coverage instead of purchasing every drug directly. The economic case rested on arithmetic that the Kaiser Family Foundation stated in the August 2017 fact sheet. Providing insurance assistance proved more cost effective for ADAPs in many cases, the fact sheet reported, because the average per capita cost of a client enrolled in insurance coverage amounted to about one third of the per capita cost of a client enrolled in a direct drug program. The figures behind that comparison appeared in the same fact sheet for fiscal year 2015. Annual per capita spending stood at 8,663 dollars for drug purchases and copayments and at 2,720 dollars for insurance purchasing and continuation. The Kaiser Family Foundation reported that ADAPs assisted with insurance coverage for 124,099 clients in calendar year 2015, at a cost of 310 million dollars, against total drug expenditures of 1.315 billion dollars in fiscal year 2015. Of the clients enrolled in 2015, ADAPs provided medications only to 101,418 clients and insurance coverage, or insurance coverage together with medications, to the 124,099 clients in the insurance group. Only three ADAPs, in Idaho, Mississippi, and South Dakota, did not use funds for purchasing health insurance in 2015.

The National Alliance of State and Territorial AIDS Directors, in the National Ryan White Part B and ADAP Monitoring Project report covering calendar year 2017, documented the continuation of the shift after the Affordable Care Act marketplaces entered operation. The share of ADAP clients served by the ADAP funded insurance program grew 18 percent between 2013, the last year before full implementation of the Affordable Care Act, and 2017. The majority of clients served by the ADAP funded insurance program in calendar year 2017, 56 percent, received premium assistance, and premium payments represented 53 percent of all ADAP insurance expenditures in that year. Insurance purchasing also interacted with the 340B mechanism. The Health Resources and Services Administration permitted an ADAP to claim a 340B rebate on a partial pay claim, where the program paid a deductible or a copayment for a client prescription, although payment of an insurance premium alone did not entitle an ADAP to claim the rebate.

The Queue as a Design Consequence

The waiting list followed from the financing structure with mechanical regularity. ADAP rested on a discretionary appropriation, fixed in amount when Congress enacted it, distributed by formula, and supplemented by state contributions and rebate income that themselves fluctuated with state budgets and drug prices. The Kaiser Family Foundation stated the distinction in the August 2017 fact sheet in direct terms: ADAPs were not entitlement programs, and annual federal appropriations, together with other available funding, determined how many clients ADAPs could serve and the level of services the programs could provide. An entitlement program, such as Medicaid, obligated the government to pay for every eligible person who enrolled, and enrollment growth automatically generated federal expenditure. A capped grant obligated the program to stop at the appropriated amount, and enrollment growth beyond that amount generated a queue, an eligibility cut, or a formulary cut, because the statute supplied no fourth outcome. Every element of the ADAP crisis history fits that structure. Combination therapy after 1996 raised the cost of the standard of care and extended the duration of treatment for every client, so a level appropriation purchased fewer client years of treatment with each passing year. The 340B discount and negotiated rebates stretched the appropriation, state contributions doubled between 2003 and 2008, and emergency allocations between 2010 and 2013 closed the gap that remained, yet each instrument operated as a supplement to a capped base rather than as a replacement for the cap. When supplements matched demand, as the combined measures did by 2017, the queue emptied. When demand outran the supplements, as demand did in South Carolina in 2006 and across 11 states in September 2011, the queue formed again in the same place and for the same reason. The waiting list was therefore a predictable output of the design that Congress chose in 1990 and retained through each reauthorization: a life sustaining drug benefit, defined by a clinical standard that the statute required every state formulary to meet, financed by an appropriation that carried no obligation to meet the demand that the standard generated.

The parts, the ordering rule, and the drug benefit all operated under authorizations that Congress revised four times and then allowed to expire, and the record of those revisions supplies the final measure of the design.

Reauthorizations, the Authorization Gap, and Outcomes

Four Extensions of the Original Authorization

Congress returned to the Ryan White program four times after Public Law 101-381 in 1990, and each return altered the machinery of distribution without replacing the basic structure of Parts A through F. The Congressional Research Service report R44282, updated on March 10, 2016, recorded the sequence: establishment in 1990 under Public Law 101-381, and reauthorization and amendment in 1996 under Public Law 104-146, in 2000 under Public Law 106-345, in 2006 under Public Law 109-415, and in 2009 under Public Law 111-87. The Ryan White CARE Act Amendments of 1996 became Public Law 104-146 when President William J. Clinton signed Senate bill 641 on May 20, 1996. The Ryan White CARE Act Amendments of 2000 became Public Law 106-345 when President Clinton signed Senate bill 2311 on October 20, 2000, and that measure carried the program through fiscal year 2005. The Ryan White HIV/AIDS Treatment Modernization Act of 2006 became Public Law 109-415 when President George W. Bush signed House bill 6143 on December 19, 2006. The Ryan White HIV/AIDS Treatment Extension Act of 2009 became Public Law 111-87 when President Barack Obama signed the legislation on October 30, 2009. Five or six years separated the early reauthorizations, the 2006 act ran for three fiscal years, and the 2009 act ran for four, as disagreement over the distribution formulas hardened into the central question of each negotiation.

The 1996 amendments shifted distribution away from cumulative counts of AIDS cases and toward estimated living cases. The 2000 amendments directed a further change: Section 206(b) of Public Law 106-345, as report GAO-06-332 recorded, required the use of HIV and AIDS case counts in formula grants not later than fiscal year 2007. The Institute of Medicine study Measuring What Matters, published in 2004, concluded that states were not equally capable of providing high quality HIV data at that time and recommended continued use of estimated living AIDS cases for at least four more years. The 2006 act therefore legislated a transition rather than a clean substitution.

The Missed Deadline and the One Year Extension

The 2000 reauthorization carried the program through fiscal year 2005, and the authorization expired at the end of that fiscal year without a successor agreement, despite administration reauthorization principles released in July 2005. Congress instead extended the program for one year under the old terms for fiscal year 2006. The extension preserved grant making under the expired formulas, so jurisdictions that expected gains from a count of living HIV cases waited another year, and jurisdictions that expected losses received another year of funding under the older method. House bill 6143 was introduced on September 21, 2006, passed the House on September 28, 2006, by a vote of 325 to 98, passed the Senate on December 6, 2006, by unanimous consent, and was signed on December 19, 2006. The brevity of the three year extension reflected the provisional character of the settlement.

Counting Living Cases of HIV Instead of Cases of AIDS Alone

The central change in Public Law 109-415 concerned the numerator of the allocation formulas. Before 2006, formula grants under Part A and Part B had been distributed in proportion to an estimate of living AIDS cases in each area or state, as report R44282 stated for both parts. Public Law 109-415 changed the distribution so that funding rested on living HIV and AIDS cases, a base that included persons whose infection had not progressed to an AIDS diagnosis. The change aligned the formula with the population served, because Ryan White grants paid for care at every stage of infection, an argument the Government Accountability Office made in GAO-06-332. The change also redistributed money toward places where the epidemic had grown later, because a count confined to AIDS cases weighted the places where infection had been concentrated earliest. Representative Carolyn B. Maloney of New York, speaking in the House on September 28, 2006, in opposition to House bill 6143, stated that New York City predicted a possible loss of 17.8 million dollars in the first year and that New York State expected losses of up to 78 million dollars in the first four years. The statement identified the political structure of the fight: a count measured against the population in care imposed concentrated losses on the oldest centers of the epidemic, whose established systems of care depended on the older count.

The dispute underneath the formula fight concerned the form in which states reported HIV cases to the Centers for Disease Control and Prevention. Some states reported cases by name, and other states used a code based system that substituted an alphanumeric code for a name to protect privacy, as report R44282 described. The agency had indicated a preference for name based reporting in 1999 to avoid double counting, and in 2005 the agency recommended that all jurisdictions transition to name based reporting. Code based systems created a deduplication problem, because a person reported under a code in one jurisdiction could be reported again in another without a reliable method of matching the reports, while name based systems allowed matching and removal of duplicates. Public Law 109-415 therefore required the Secretary of Health and Human Services to disburse two thirds of Part A emergency relief funds on the basis of reported and confirmed living name based cases, provided a transition and exemptions for states with a transition plan, and required an adjustment to code based counts for duplicative reporting. In the implementation recorded by the Congressional Research Service, jurisdictions in transition incurred a reduction of 5 percent in reported non-AIDS HIV cases before fiscal year 2012 and 6 percent for fiscal year 2012. Beginning with fiscal year 2013, only living name based cases counted in Part A, Part B, and AIDS Drug Assistance Program determinations. A state decision about surveillance method, taken years earlier for reasons of public health practice, acquired a direct fiscal price in 2006.

Eligible Metropolitan Areas, Transitional Grant Areas, and Continued Eligibility

Public Law 109-415 also redrew the Part A categories. The act set the population threshold for a metropolitan area at 50,000 or more, and eligible metropolitan area status rested on more than 2,000 reported AIDS cases during the most recent five calendar years, together with the living case thresholds stated in the statute. The 2006 reauthorization established transitional grant areas, defined in report R44282 as metropolitan areas with at least 1,000 but fewer than 2,000 cumulative AIDS cases during the most recent five calendar years, a tier too large for the emerging communities mechanism under Part B and too small for full eligible metropolitan area status. Continued eligibility softened both thresholds, because an area continued to receive a grant until the area failed for three consecutive years to meet the stated tests. Grandfathering had shaped the program since the 1996 amendments, when a clause preserved the eligibility of areas that had qualified for fiscal year 1996 even if reported cases fell below the threshold. The Government Accountability Office reported in GAO-06-332 that in fiscal year 2004, 29 of the 51 eligible metropolitan areas did not meet the 2,000 case threshold but retained status under the grandfather clause, and that funding to those 29 areas was about 116 million dollars, or approximately 20 percent of total funding under the first title in that year.

The Core Medical Services Requirement and the Hold Harmless Provisions

The 75 percent core medical services requirement received full treatment in the architecture section of this profile, and the 2006 act applied that requirement across Part A, Part B, and Part C, subject to a waiver process. The Kaiser Family Foundation fact sheet paired the requirement with a minimum formulary for medications in every state AIDS Drug Assistance Program, a second requirement from the same act, and the administration principles of July 2005 had proposed the same spending figure.

Hold harmless provisions blunted the redistribution that the new counts would otherwise have produced. The mechanism guaranteed a floor under a formula grant, expressed as a percentage of a reference year grant, and financed the guarantee within the appropriation, so the cost of protecting losing jurisdictions fell on the gains of gaining jurisdictions. For Part B, Public Law 109-415 provided that for fiscal year 2007 the total of a state formula grant and the related statutory grant was not less than 95 percent of that total for fiscal year 2006. The Government Accountability Office analysis GAO-08-137R, dated October 5, 2007, described the Part A pattern in parallel terms: a decrease limited to 5 percent for fiscal year 2007, and at least 100 percent of the fiscal year 2007 formula amount for fiscal years 2008 and 2009. Hold harmless protection had entered the program in the 1996 amendments, and by 1999 San Francisco was the only metropolitan area that continued to benefit, according to Government Accountability Office testimony on the 2000 amendments, which stated that San Francisco received approximately 2,360 dollars per case in fiscal year 2000 against approximately 1,290 dollars per case for other metropolitan areas. The 2006 act therefore combined a formula that moved money toward measured living prevalence with floors that delayed the movement, and a repeal provision in section 703 that repealed Title XXVI as of the end of fiscal year 2009.

The Extension Act and the Removal of the Sunset

The Ryan White HIV/AIDS Treatment Extension Act of 2009, Public Law 111-87, signed on October 30, 2009, extended the program for four more years, through fiscal year 2013. House Report 111-305 stated the fiscal pattern in a summary of section 2: a 5 percent increase over fiscal year 2009 authorization levels across Parts A through D and Part F for each of fiscal years 2010 through 2013. Section 2 also removed the sunset provision that the 2006 reauthorization had included, as report R44282 recorded, and re-established Title XXVI retroactive to September 30, 2009, so the interval before signature produced no break in authority. Removal of the sunset changed the default rule: inaction after 2013 would leave the title in place with an expired authorization, a distinction that governed every appropriations cycle through September 15, 2018.

The 2009 act also reversed a 2006 decision about the Minority AIDS Initiative. House Report 111-305 recorded that before 2006, Minority AIDS Initiative funding under Part A and Part B was allocated on the basis of a share of AIDS cases among racial and ethnic minorities, that the 2006 act shifted that funding to a competitive process, and that the Government Accountability Office had found that the competitive process created a large administrative burden, resulted in jurisdictions receiving no funding, and produced no reported improvements in performance. Section 2 therefore returned that funding to formula funding, on the basis of the distribution of HIV and AIDS cases among racial and ethnic minorities. The same section synchronized Minority AIDS Initiative application schedules across Parts A through D and Part F. The 2009 act retained the 75 percent core medical services requirement, continued the hold harmless pattern as a guarantee of no less than 95 percent of fiscal year 2009 formula amounts in fiscal year 2010, 100 percent of fiscal year 2010 amounts for fiscal years 2011 and 2012, and no less than 92.5 percent of the preceding year grant for fiscal year 2013, and extended the transition for name based reporting.

Expiration of the Authorization and Continuation Through Appropriations

The authorization under Public Law 111-87 ran through fiscal year 2013 and expired on September 30, 2013. No reauthorization followed in any year through September 15, 2018, and the program continued through annual appropriations acts during the entire interval. Continuation was legally possible for the reason stated in the Kaiser Family Foundation fact sheet: the legislation contained no sunset provision after the 2009 removal of the 2006 sunset, so the lapse did not terminate Title XXVI, and Congress could fund the program through annual appropriations despite the lapse. Report R44282 stated the same position: section 2(a) of Public Law 111-87 removed the sunset, the authority expired, and Congress continued to appropriate funds to carry out Title XXVI. The distinction between authorization and appropriation thus became the operating condition of the program for five fiscal years within the period ending on September 15, 2018, a period in which the program possessed a complete statutory structure and a named administering agency in the Health Resources and Services Administration, and possessed no unexpired statement from Congress about the amounts authorized for the years in which money was spent.

The appropriations record supplied the amounts that the expired authorization no longer supplied. The Consolidated Appropriations Act, 2016, Public Law 114-113, provided 2.323 billion dollars for fiscal year 2016, including 25 million dollars for the Special Projects of National Significance, as report R44282 recorded. The Consolidated Appropriations Act, 2017 funded the program at 2.318 billion dollars, a reduction of 4 million dollars that fell on Part C, according to the May 2017 summary of the enacted bill by AIDS United and allied national organizations. The Kaiser Family Foundation analysis of the Consolidated Appropriations Act, 2018 recorded a total of 2,318.8 million dollars, equal to approximately 2.32 billion dollars. After September 30, 2013, the program therefore rested on appropriations alone, with each annual act renewing funding without a statutory deadline that forced a policy vote, a pattern that sustained the program indefinitely.

Clients Served and Measures of Retention and Viral Suppression

The outcome record rested on the client level reporting system of the Health Resources and Services Administration, summarized for 2014 in report R44282. The program served 512,214 low income people with HIV or AIDS in 2014, above half a million clients. Of the clients served in 2014, 25.4 percent were uninsured and 64.2 percent were living at or below 100 percent of the federal poverty level. The caseload was 70.6 percent male, 47.2 percent Black or African American, 22.2 percent Hispanic or Latino, and 27 percent white, and clients aged 50 years and older accounted for 40.4 percent of the caseload.

Retention and viral suppression supplied the two reported outcome measures, and each applied to clients who received medical care within the reporting system rather than to every person who received any service. The Health Resources and Services Administration reported that in 2014, 80.4 percent of clients were retained in HIV medical care, calculated as 218,758 clients out of 272,193 in the retention measure, and 81.4 percent achieved viral suppression, calculated as 231,140 clients out of 283,811 in the suppression measure. Clinical research cited in report R44282 had demonstrated that treatment producing viral suppression lowered the risk of HIV transmission by 96 percent.

An analysis by Hess and Hall of the Centers for Disease Control and Prevention, published in the Journal of Community Health in 2018 and based on National HIV Surveillance System data reported through 2016 from 37 states and the District of Columbia with complete laboratory reporting, found that among people living with diagnosed HIV in 2014, 57.9 percent were virally suppressed. The comparison required care, because the Ryan White figure applied to clients who had received medical care and had a viral load result in the measure, while the surveillance figure applied to all persons living with diagnosed HIV in the reporting jurisdictions, including persons who had received no care during 2014.

Disparities Inside the Aggregate Results

The aggregate rate concealed lower results for defined subgroups, and the clearest subgroup record in the Congressional Research Service summary concerned clients aged 13 to 24 years. Among youth clients in 2014, retention was 75.1 percent, calculated as 10,988 youth clients out of 14,639, against the program average of 80.4 percent, and viral suppression was 64.6 percent, calculated as 10,407 youth clients out of 16,117, against the program average of 81.4 percent, a gap of 16.8 percentage points in the subgroup facing the longest horizon of treatment. National data showed gradients of the same direction. A Centers for Disease Control and Prevention analysis of sustained suppression in 2014, published in the Morbidity and Mortality Weekly Report in 2018, reported the lowest prevalence, at 29.2 percent, among Black persons aged 13 to 24 years. The Hess and Hall analysis reported suppression of 65 percent among white persons with diagnosed HIV, 51.5 percent among Black persons, and 58.2 percent among Latino persons, and reported that older persons were more likely to be suppressed than younger persons in every region.

The subgroup record qualified the aggregate record without overturning the aggregate record. The disparity figures reported for 2014 were produced under a statutory structure that Congress had last amended on October 30, 2009, and had funded after September 30, 2013, through appropriations acts alone. The record through September 15, 2018, closed on that combination: documented service to more than half a million clients in a single year, suppression and retention rates above the national rates for the diagnosed population in the same year, gaps for youth clients inside the program totals, and a legal foundation that consisted, for five fiscal years, of annual appropriations written against an expired authorization.

Closing Assessment

The namable claim of the Ryan White record is success without authorization. A program whose statutory authorization expired at the end of fiscal year 2013 continued to serve more than half a million clients in a single measured year, retained four fifths of medical clients in care, and recorded viral suppression rates above the national rate for the diagnosed population. Appropriations sustained the program indefinitely because the Extension Act had removed the sunset, so each annual funding act renewed the grants without forcing a policy vote on the design. Reauthorization, on that record, stands revealed as a political act rather than an operational necessity: reauthorization revised formulas, categories, and spending composition, but the machinery ran on appropriations alone once Congress declined to supply a successor authorization.

The honest limit sits inside the same structure. A capped discretionary program cannot promise a benefit to every eligible person, and the queues and gaps reappear whenever appropriations lag need, as the drug assistance waiting lists demonstrated in state after state. Eligibility thresholds vary by state, formula floors delay redistribution toward measured prevalence, and subgroup outcomes for youth clients trail the aggregate record by wide margins. The design that made the program durable also made the program conditional, and the condition was an annual appropriation set against a clinical standard that generated demand regardless of the amount appropriated.

Placement inside the wider statutory landscape clarifies the choices that produced that combination. The contrast with the Medicaid statute and the structure of Title XIX shows an entitlement beside a capped grant, and the interaction with the key provisions of the Affordable Care Act shows a payer of last resort program absorbing the gaps that a coverage expansion left behind. The school exclusion at the origin of the statute belongs to the same legal era as the Americans with Disabilities Act and the federal disability framework, while the grant architecture shares a family resemblance with the categorical federal aid structure traced in the Higher Education Act and federal student aid. Readers assembling a working file on the statute can keep statute notes, citations, and case chronologies together free on VaultBook.

Frequently Asked Questions

Q: What does the Ryan White CARE Act fund?

The act funds a system of HIV care for low income people who lack adequate coverage, delivered through grants rather than through a federal benefit paid to individuals. Funded services include outpatient and ambulatory medical care, HIV medications through the AIDS Drug Assistance Program, oral health care, mental health services, substance abuse outpatient care, medical case management, and early intervention services that connect a person with HIV to continuing care. A smaller share funds support services such as medical transportation, food assistance, housing referral, and linguistic services, where a support service removes a documented barrier to treatment. The money reaches care through metropolitan governments, state governments, clinics, and community organizations.

Q: Why is the Ryan White CARE Act named after a teenager?

The act is named after Ryan White, an Indiana teenager with hemophilia who received an AIDS diagnosis in December 1984 after infection through a blood product used in treatment. A school district barred White from classes despite guidance from state and federal health officials that classroom contact posed no risk, and a legal and administrative fight lasting more than nine months followed before attendance rights were settled. White testified before a presidential commission, appeared in national media, and became the most widely recognized individual account of the epidemic. White died in April 1990, and a Senate floor amendment in May 1990 placed the name on the pending care legislation.

Q: What is ADAP in the Ryan White program?

ADAP is the AIDS Drug Assistance Program, a state operated program financed through a designated earmark inside the Part B appropriation. Each state ADAP supplies HIV medications to low income people who hold limited prescription coverage or none, under eligibility rules and a formulary that the state sets above a federal floor requiring at least one drug from each class of antiretroviral medication. ADAPs purchase drugs at discounted prices through the 340B Drug Pricing Program, claim rebates that form a large share of the national ADAP budget, and may also purchase health insurance for clients where insurance costs less than direct drug purchase.

Q: Is the Ryan White program a payer of last resort?

The program is a payer of last resort by statute. Title XXVI bars the use of grant funds for any item or service to the extent that payment has been made, or could reasonably be expected to be made, by a state compensation program, an insurance policy, a federal or state health benefits program, or a prepaid health services entity. Providers therefore verify insurance status at intake, screen each client for Medicaid, Medicare, and private coverage, bill third party payers first, and reassess eligibility at least every six months. Grant funds occupy the space that other payers leave uncovered, underpaid, or exhausted.

Q: When was the Ryan White CARE Act last reauthorized?

The last reauthorization was the Ryan White HIV/AIDS Treatment Extension Act of 2009, Public Law 111-87, signed on October 30, 2009. That act extended the program through fiscal year 2013, raised authorization levels across the parts, returned Minority AIDS Initiative funding under Part A and Part B to a formula basis, and removed the sunset provision that the 2006 reauthorization had imposed on Title XXVI. The authorization expired on September 30, 2013, and no successor reauthorization followed through the period covered by this profile. Appropriations acts continued to fund the program in every year after expiration.

Q: What are the parts of the Ryan White program?

Title XXVI divides the program into parts distinguished by recipient and purpose. Part A funds eligible metropolitan areas and transitional grant areas carrying the largest burdens. Part B funds states and territories, and contains the AIDS Drug Assistance Program earmark. Part C funds clinics and community health centers directly for early intervention services and outpatient primary care. Part D funds family centered care for women, infants, children, and youth. Part F funds demonstration projects of national significance, provider training through the AIDS Education and Training Centers, dental reimbursement and partnership programs, and the statutory home of the Minority AIDS Initiative.

Q: Do Ryan White clients reach viral suppression?

Program reporting for 2014 recorded viral suppression for 81.4 percent of clients in the suppression measure, calculated as 231,140 clients out of 283,811 clients who received medical care and had a viral load result in the measure. Retention in care stood at 80.4 percent in the same year. A surveillance comparison for the same year found suppression among 57.9 percent of all people living with diagnosed HIV in the reporting jurisdictions, a population that included people who received no care. Subgroup results trailed the aggregate, with suppression among youth clients aged 13 to 24 recorded at 64.6 percent.

Q: How did Medicaid expansion change the Ryan White program?

Medicaid expansion under the Affordable Care Act moved many low income clients onto an entitlement in states that adopted the expansion, and grant funds in those states shifted toward services that Medicaid left uncovered, toward cost sharing and premium assistance, and toward support services such as transportation and case management. Measurement between 2012 and 2014 found Medicaid coverage among people with HIV in care rising from 39 percent to 51 percent in expansion states, while non-expansion states recorded no significant coverage gain. Reliance on the Ryan White program rose in both groups of states, because insured clients continued to need the wrap around services that the grant supplied.

Q: Is the Ryan White program an insurance plan or an entitlement?

The program is neither an insurance plan nor an entitlement. An insurance plan collects premiums and promises payment for covered services under a policy, and an entitlement obligates the government to pay benefits for every person who meets the statutory eligibility criteria. The Ryan White program is a discretionary grant program financed by annual appropriations of a fixed amount. Eligibility gives a person access to services only where a funded grantee operates, only for service categories that the grantee funds, and only while appropriated funds remain. When demand exceeds the appropriation, the program responds through waiting lists, tightened eligibility, or reduced formularies rather than through automatic additional expenditure.

Q: Who is eligible for Ryan White services?

Eligibility rests on three findings: a diagnosis of HIV infection, low income under a threshold set by the grantee, and uninsured or underinsured status for the service requested. The statute sets no single national income ceiling, and state and metropolitan grantees set thresholds that commonly fell between 300 percent and 500 percent of the federal poverty level, with different ceilings for different service categories in some jurisdictions. Applicants supply proof of diagnosis, residence, and income, and recertification follows the six month cycle of payer screening. A separate schedule caps the charges that a provider may impose, scaled to income, and bars any charge at or below the poverty level.

Q: How does the program operate after the authorization expires?

An expired authorization and a terminated program are distinct legal conditions. The Extension Act of 2009 removed the sunset that the 2006 act had placed on Title XXVI, so expiration of the authorization period at the end of fiscal year 2013 left the statutory structure, the parts, the formulas, and the administering agency in place. Congress retained the power to appropriate funds for a program in that condition, and annual appropriations acts supplied the money in each following year, including 2.323 billion dollars for fiscal year 2016. Operation continued under HRSA guidance and the unamended text of Title XXVI, without a congressional statement of authorized amounts for the years in which the money was spent.

Q: How do Part A and Part B differ?

Part A and Part B differ in recipient, geography, and governing body. Part A directs emergency relief grants to the chief elected official of a metropolitan area that meets case thresholds, and a local planning council sets service priorities for that area. Part B distributes grants through state governments across all states and territories, under priorities set by the state agency, and contains the earmark for the AIDS Drug Assistance Program. Part A formulas rest on the metropolitan share of living cases, with a competitive supplemental component, while Part B divides funds among base grants, supplemental grants for demonstrated need, emerging communities, and the drug assistance earmark.

Q: What counts as a core medical service?

Core medical services are the clinical categories at the center of the statutory benefit. The catalogue includes outpatient and ambulatory health services, AIDS Drug Assistance Program treatments and local pharmaceutical assistance, oral health care, early intervention services, health insurance premium and cost sharing assistance, home health care, medical nutrition therapy, hospice services, home and community based health services, mental health services, substance abuse outpatient services, and medical case management including treatment adherence services. Program policy required recipients under Part A, Part B, and Part C to direct at least 75 percent of grant funds to those categories. Support services, including transportation, outreach, and respite care, occupied the remaining share.

Q: What causes an ADAP waiting list to form?

A waiting list forms when eligible demand for medications exceeds the capped resources available to a state ADAP. The appropriation is fixed when enacted, the state contribution and rebate income fluctuate, and the cost of the standard of care rises as combination therapy extends treatment across a lifetime for every enrolled client. Recession conditions add entrants through unemployment and lost coverage while state general funding falls. States reach first for eligibility reductions, formulary reductions, and enrollment caps, and a formal queue appears when those measures fail to close the gap. The national queue peaked at 9,298 individuals in 11 states in September 2011 before emergency allocations and reprogrammed funds cleared the lists.

Q: What does HRSA do in the Ryan White program?

The Health Resources and Services Administration, inside the Department of Health and Human Services, administers Title XXVI through the HIV/AIDS Bureau. HRSA awards formula and competitive grants under each part, issues program guidance and policy notices that define allowable services and eligibility documentation, sets the terms on which recipients report client level data, and oversees recipient compliance with the payer of last resort rule and the core medical services requirement. HRSA also administered emergency relief awards directed at states with drug assistance waiting lists. Delivery of care remains with state agencies, metropolitan governments, clinics, and community organizations that receive the grants.

Q: How many clients does the program serve in a year?

Client level reporting summarized for 2014 recorded 512,214 low income people with HIV or AIDS served in that year, a total above half a million. Of those clients, 25.4 percent were uninsured and 64.2 percent lived at or below 100 percent of the federal poverty level. The caseload was 70.6 percent male, 47.2 percent Black or African American, 22.2 percent Hispanic or Latino, and 27 percent white, and clients aged 50 years and older accounted for 40.4 percent of the total. Counts rest on reports from funded recipients, and outcome measures such as retention and viral suppression apply to the subset of clients who received medical care inside the reporting system.

Q: What does a Part A planning council do?

A Part A planning council is the local priority setting body that the chief elected official of an eligible metropolitan area must establish as a condition of the grant. Membership must reflect the demographics of the population of individuals with HIV and AIDS in the eligible area. The council assesses need across the service area, develops a plan for delivery of HIV care, and sets the priorities that determine which service categories receive funding and in what order. The council holds no grant administration authority and is barred from direct involvement in administration of the grant. Councils also carry a statutory duty to develop strategies for identifying people unaware of HIV status and connecting those people with care.

Q: Can Ryan White funds pay private insurance premiums?

Program funds may pay private insurance premiums, together with deductibles and copayments, under the health insurance premium and cost sharing assistance category. The authority rests on a cost effectiveness finding: the coverage purchased or maintained must include at least one approved medicine in each drug class of core antiretroviral medicines in federal clinical guidelines, together with appropriate outpatient services, and the aggregate cost of the coverage must fall below the cost of providing medications and outpatient care directly. The payment preserves an insurance relationship that nonpayment would destroy, and drug assistance programs used the same mechanism extensively, at roughly one third of the per capita cost of direct drug purchase.

Q: What is the Minority AIDS Initiative?

The Minority AIDS Initiative is a funding stream inside the Ryan White program directed at the disproportionate impact of HIV and AIDS on racial and ethnic minorities. The 2006 reauthorization codified the initiative under Part F of Title XXVI, and funds flowed through competitive grants under Part A, Part B, Part C, and Part D and through the AIDS Education and Training Centers. The Extension Act of 2009 directed HRSA to develop a formula for initiative grants under Part A and Part B tied to the distribution of populations disproportionately affected, and returned Part A and Part B initiative funding from a competitive basis to a formula basis after a federal review found administrative burden and gaps in the competitive process.

Q: What changed in the allocation formula under the Modernization Act?

The Modernization Act of 2006 changed the numerator of the allocation formulas from estimated living cases of AIDS alone to living cases of HIV and AIDS, aligning the distribution with the population that the grants served at every stage of infection. The change redistributed funds toward places where the epidemic had grown later and imposed concentrated projected losses on the oldest centers of the epidemic. Implementation depended on name based reporting of HIV cases, with transition reductions applied to code based counts for duplicative reporting, and from fiscal year 2013 only living name based cases counted in Part A, Part B, and drug assistance determinations. Hold harmless floors delayed the full effect of the redistribution.