Promises in the Plague: Passage of the Ryan White Comprehensive AIDS Resources Emergency Act as a Case Study for Legislative Action
Poindexter, Cynthia Cannon, Health and Social Work
Social work has many legitimate pursuits and fields of practice in which practitioners should be proficient. However, one of the profession's most important activities, legislative advocacy, is often neglected, in spite of the fact that the accrediting body for social work education, the Council for Social Work Education (CSWE), describes the profession's purpose as including political action, empowerment of groups at risk, organizational advocacy, and the pursuit of social and economic justice (CSWE, 1995). Several social workers have written about the need for the profession to embrace more fully its activist mission and its values concerning social and environmental change (Brieland, 1990; Ezell, 1994; Freire & Mock, 1990; Specht & Courtney, 1994; Wagner, 1990; Weick, 1993). Although social action was used successfully in the 1960s (Figueira-McDonough, 1993), policy analysis and legislative advocacy fell out of favor as a social work intervention in the 1970s and 1980s (Jansson, 1994). This may be because social workers are ambivalent about politics, naive about the lawmaking process, in awe of legislators, impatient with the slow rate of policy change, reluctant to engage themselves in political matters because they see these issues as diversions from microlevel practice, or uncertain that they can be effective in the confusing arena of politics (Alexander, 1982; Brieland, 1982; Mahaffey, 1982). Regardless of the causes, this hesitancy is unfortunate because progress in the direction of social justice and resource access requires that social workers be directly involved in the formation and modification of social policy and that policy practice be an intrinsic part of the social work identity.
Because the construction of social welfare policy is often a political process, social workers must know how to successfully use legislative advocacy as an intervention, especially in the current conservative political climate (Dear & Patti, 1981; Ewalt, 1996; Figueira-McDonough, 1993; Jansson, 1994). This article presents a case study to illustrate a success story in this arena - that is, the passage of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (P.L. 101-381). The strategies that contributed to securing federal funds for an issue which was then very controversial and unpopular can be used for other pressing social and political issues, such as the "reform" of welfare reform.
OVERVIEW OF THE RYAN WHITE CARE ACT OF 1990
The Ryan White CARE Act of 1990 (P.L. 101-381) was the first and only comprehensive services delivery package addressing social services and medical care for people with HIV disease in the United States. The legislation created programs to enhance inpatient and outpatient care and to coordinate social services in the community (Congressional Information Service, 1990b). This government program began with a bill cosponsored by Senators Edward Kennedy (D-MA) and Orrin Hatch (R-UT), called the Comprehensive AIDS Resources Emergency (CARE) Act of 1990, which was introduced into Congress on March 7, 1990, (136 Cong. Rec. 1990, HR1) and signed into law by President Bush on August 18, 1990, only five months later (Congressional Quarterly [CQ] Almanac, 1990).
Naming the act for Ryan White, an 18-year-old Indiana boy who was critically ill with AIDS at that time, was proposed on April 4, 1990, in a meeting of the Senate Committee on Labor and Human Resources (CQ Almanac, 1990). The measure, which was presented as a response to a national disaster or emergency, was passed quickly by both the House and Senate, authorized for five years, and appropriated approximately $220,500,000 per year (CQ Almanac, 1990). The strengths of the act include a community-based approach to decision making and authority, flexibility in delivery of services, services eligibility criteria that were above the poverty guideline, involvement of consumers in planning, access for low-income people, demonstration projects, support of the existing health care and services delivery system, and case management and advocacy (Congressional Information Service, 1990a).
The rapid passage of this particular bill should be examined in the context of seven years of discussion in the legislature concerning the impact of AIDS on the nation. Congressional transcripts show that beginning in 1983, House subcommittees were conducting hearings on the impact of AIDS; Senate hearings began in 1986. Consistently witnesses in these hearings offered moving and alarming testimony about the effect of AIDS on human lives and on the health care delivery system (Congressional Information Service, 1987,1988,1989,1990a; Hearings before a Subcommittee, 1983). There were several congressional members who were vocal throughout this period about the need for a federal monetary response to the crisis.
Despite the Reagan administration's insistence that additional money did not need to be allocated, Congress did authorize funds for AIDS research early in the epidemic (Shilts, 1987). However, service programs were not created by the legislature until seven years after congressional hearings began to document the overwhelming crisis of AIDS in this country. To examine why an effort was so quickly successful in 1990, it is necessary to examine the elements that contributed to this endeavor. They were the formation of a diverse national coalition that garnered respect for the cause; bipartisan effort to pass the law; the effective use of highly visible personalities as spokespersons, which drew attention to the problem; and the redefinition of AIDS as a disaster and as a social problem that affected people across socioeconomic and cultural lines.
Use of a Coalition
One of the primary reasons for the success of this ground-breaking piece of legislation was a strong national collection of 125 disparate national organizations, called the National Organizations Responding to AIDS (NORA), which was formed solely to work toward a legislative response to AIDS. The Senate record reflects the influence of NORA on the ultimate outcome; as Senator Kennedy accepted the final conference report on the bill that had initially carried his name, he credited the support of NORA and its leader, Tom Sheridan, a social worker who was then policy director of the AIDS Action Council in Washington, DC, for both the writing and passage of the legislation (136 Cong. Rec. S12536, 1990). Although NORA convened officially in the fall of 1989 expressly to facilitate lobbying efforts on behalf of AIDS initiatives, many of its members had prior experience in working together as the Consortium for Citizens with Disabilities (CCD). The mission of CCD was to work on the passage of the Americans with Disabilities Act of 1990 (P.L. 101-336), which was also a successful endeavor. Most of the core leaders of NORA had been leaders in CCD (Tom Sheridan, personal communication, October 13, 1995).
After NORA was created, representatives from the member national groups provided publicity, lobbying, and congressional testimony and witnesses. In its first formal testimony, NORA defined its advocacy role and its relationship with Congress in this way: "The NORA coalition seeks to inform the Congress on the utilization of services, effective programs of prevention, education and care, as well as bureaucratic obstacles to providing necessary assistance" (testimony of T. Sheridan, 1990). NORA consisted of organizations that would seem on the surface to have very little in common, but that fact helped to lend credibility and strength to their efforts to help Americans with AIDS. There were four broad categories of groups: (1) traditional service providers and professional organizations (such as NASW, the American Nurses' Association, and the American Red Cross); (2) specialized advocates (such as the National Parent-Teacher's Association [PTA], the National Council on La Raza, and the National Gay and Lesbian Task Force; (3) AIDS organizations (such as the AIDS Action Council, the American Foundation for AIDS Research, and the National Association of People with AIDS); and (4) a broad range of other religious and secular organizations (AIDS Education, Care, and Drug Development, 1989). Clearly, a national level coalition that included the PTA, La Raza, and the National Gay and Lesbian Task Force could wield power across a broad range of domains. The effectiveness of NORA seemed to stem from three facts: (1) The large number of national groups gave weight to the concern at hand; (2) the presence of mainstream and long-respected agencies lent legitimacy to the issue; and (3) the passion and knowledge of less traditional activist organizations helped to fuel the sense of urgency and outrage.
The CARE Act had from the beginning bipartisan and cross-regional congressional support. NORA's leaders made the conscious decision to garner support from both parties to strengthen their position (Sheridan, 1998). An analysis of the voting patterns on this bill in the House and Senate shows that there was never a division in terms of political parties, ethnic characteristics, urban versus rural differences, or regions (136 Cong. Rec. HR1, 1990; 136 Cong. Rec. S56199, 1990). The two major sponsors, Kennedy and Hatch, were themselves an unusual dyad - Senator Jesse Helms (R-NC) in one debate called them "an odd couple" (136 Cong. Rec. S56199, 1990); it was surprising to find a liberal Catholic Democrat united with a conservative Mormon Republican in such a controversial endeavor. By the time the CARE Act came before the full Senate for a vote, it had 67 sponsors (136 Cong. Rec. S56199, 1990).
The Ryan White CARE Act passed the Senate in May 1990 with 95 "yeas" and only four "nays." When the act was passed in the Senate, Senator Robert Dole (R-KS) commented that "the bipartisan support for the bill in the Congress coupled with the support of more than 100 national organizations is a testament to the seriousness of the problem facing many citizens of this nation" (136 Cong. Rec. S6305, 1990).
Use of High-Profile Personalities
The CARE bill gained acceptance largely because of the pluralistic nature of the support - a concerted effort by a wide range of professions to testify in favor of federal intervention, a bipartisan base, and a varied national coalition. However, part of this success was the use of celebrities to publicize the problem and proposed solution.
Two examples involving Hollywood actors stand out as illustrations. Shortly after the CARE bill was introduced, on March 13, 1990, actor Paul Michael Glazer and his HIV-positive wife Elizabeth spoke at a House subcommittee hearing on pediatric AIDS, where they were praised for convincing the formerly unresponsive President Reagan to do a public service announcement on pediatric AIDS (136 Cong. Rec. HR13, 1990). When the CARE bill was introduced into the Senate and House on March 7, 1990, Senators Kennedy and Hatch held a press conference to announce the bill, at which they were joined by actress Elizabeth Taylor, representing the American Foundation for AIDS Research. On that same day, in the House Budget Committee Task Force on Human Resources (a subcommittee of the Budget Committee), Representative Henry Waxman (D-CA) publicly introduced the bill in the presence of several guests, including Elizabeth Taylor and Mayor Dinkins of New York City. Ms. Taylor spoke forcefully in support of the bill during her testimony to the Budget Committee, playing a vocal and visible role in its introduction. Representative Barbara Boxer (D-CA), chair of the committee, closed the hearing in this way:"We had everybody from a movie star . . . to the mayor of the largest city in this country . . . to the Members of Congress who have taken the leadership in this issue since we really started this fight, to . . . people on the frontline and doctors and social workers and activists. I think it has just been a superb experience for me to sit here" (136 Cong. Rec. HR13, 1990). Involving people who could draw media attention was key to legitimizing AIDS as a public health and social service issue.
Definition of AIDS as a Social Problem
The response to a social problem often hinges on the formation of the definition of the situation and how the issue is perceived to intersect with the values of the society. AIDS could be framed as a moral, medical, public health, personal, economic, societal, or political issue (Sills, 1994). Throughout the issue definition process in the national legislature there were value conflicts. On the one hand, care for the sick, compassion for the suffering, rescue of the victims of disaster, and aid for the floundering health care providers were values which were held in high regard. An example of that perspective is Senator Kennedy's introductory remarks in a December 1989 Senate committee hearing:
Taking care of the sickest patients - those who arrive on the hospital doorstep through the emergency room - has become a losing proposition for the nation's health care institutions. . . . The crisis is not someone else's problem. It is a problem for all of us . . . our misguided policies are eroding our ability to deliver care to people who need it, and making it harder for hospitals to do what society asks and expects of them. . . . We must all deal more effectively with the AIDS epidemic. We should create a million dollar emergency relief fund to help areas hardest hit by AIDS. (The American Health Care Crisis, 1990, pp. 3-4)
On the other hand, those who justified the lack of a response through a view of AIDS as a personal problem and a moral failing were also representing another set of values. Introductory comments by Representative Larkin Smith (R) of Mississippi in a House committee hearing in the summer of 1989 illustrates the fear of betraying morality by funding AIDS-related research and services:
Should the subcommittee remain true to its previous form, the central focus throughout these hearings will be to demonstrate that the Federal Government is not doing enough to combat AIDS. We are likely to hear . . . more tolerance for the sometimes indefensible behavior that can lead to AIDS. . . . What I also want to know is . . . what steps are we taking to prevent the primary cause of AIDS transmission, which is individual behavior.
. . . AIDS is primarily transmitted through behavior falling far outside the accepted norms of an overwhelming majority of American citizens. (Treatment and Care for Persons with HIV, 1989, p. 3)
For the CARE bill to survive in Congress, two types of redefinitions had to occur: AIDS had to be seen as affecting all segments of society, and AIDS had to be accepted as a national disaster.
AIDS as More than a Marginalized Issue
In the first few years of the epidemic, moral and political discourses obscured and overshadowed the public health emergency and economic crisis; hysteria and stigma formulated much of the definition of the problem (Shilts, 1987). The earliest care and prevention responses, as well as the early political activity, came almost exclusively from the gay community. The mainstream media did not write about AIDS as a health concern until heterosexuals were found to be infected, and it did not cover AIDS as a funding issue until the illness of the well-know actor Rock Hudson was publicly disclosed (Shilts, 1987).
Congressional opponents of a federal response to AIDS defined AIDS primarily as a personal and moral issue, not as a national health care crisis. For example, Senator Helms, the leading opponent in the Senate, objected to what he saw as the government sanctioning and legitimizing questionable sex and drug behavior and complained about the activist tone that had been set by proponents of the bill. While defending one of his amendments to the CARE Act, he stated, "I can already hear the knees jerking within the AIDS lobbies . . . the radical elements of this lobby have almost written the rules of debate on this bill. . . .a lot of things are unmentionable. They will tell you that we cannot pick on those who practice sodomy; we cannot criticize the IV drug users. . . . Bullfeathers!" (136 Cong. Rec. S6294, 1990).
One of the most important shifts in the public and political climate regarding AIDS was the changing perception of people who were at risk of becoming HIV infected. Unfortunately, the AIDS arena had been characterized by institutionalized homophobia and a distaste for drug users, which allowed politicians to more easily justify not responding. When legislators were forced to admit the impact on children, people with hemophilia, and heterosexual women (characterized as "innocent victims" to differentiate them from those who had asked to be iii), they were more easily convinced that the disease posed a serious threat. Naming the bill after Ryan White, an adolescent who had been almost universally labeled as an "innocent victim," was also a savvy political move (Sheridan, 1998). When HIV disease had obviously and rampantly crossed the lines of socioeconomic class, ethnicity, and sexual orientation, lawmakers were more likely to define it as a social problem.
AIDS as a National Disaster
During seven years of congressional hearings, the segments of society that were demanding action were always diverse. Among the witnesses were physicians, hospital administrators, epidemiologists, public health officials, social services providers, scientists, elected officials, gay activists, and people with HIV and their loved ones (Congressional Information Service, 1987, 1988, 1989, 1990a; Hearings before a Subcommittee, 1983). These voices identified AIDS as a massive and urgent social, economic, and medical problem However, as demonstrated by the government's lack of a fiscal or planning response, AIDS was not widely identified quickly as an issue worthy of federal intervention. Unlike some other public health concerns of the early 1980s, such as toxic shock syndrome, the Tylenol tampering, and legionnaire's disease, AIDS was labeled early as a condition affected marginal groups. This association made it politically feasible and defensible to not respond, even though the numbers affected by HIV were so much more overwhelming than for the other health issues. In 1982, for example, the federal budget levels were as follows: $36,100 per death for toxic shock syndrome, $34,841 per death on legionnaire's disease, and $8,991 per death on AIDS (Shilts, 1987).
AIDS had to be defined convincingly as a problem that merited large-scale government action. Members of NORA, legislators who supported the CARE bill, and witnesses in the hearings defined AIDS as a national crisis that called for immediate economic relief. In the second half of 1989, Hurricane Hugo on the East Coast and an earthquake on the West Coast had necessitated federal emergency relief and had brought the concept of disaster to the public and political forefront. Using the familiar model and terminology of disaster relief was helpful in normalizing a government response and in focusing the media attention (Sheridan, 1998). For instance, during a Senate debate, Senator Lautenberg (D-NJ) said,
The AIDS epidemic is a national disaster and we need to treat it that way. We must respond quickly. When Hurricane Hugo struck South Carolina, we responded immediately with assistance to help devastated cities and counties recover from the damage. When an earthquake rocked northern California, we responded immediately. . . . The AIDS disaster is no different. (136 Cong. Rec. S6319, 1990
The crisis and disaster relief metaphors were used by Elizabeth Taylor during the Senate event introducing the CARE bill; she explained that the legislation "can help save our health care system from disaster." When asked about the necessity for federal involvement in AIDS care, Taylor responded that the crisis was so big and overwhelming that only the government could raise the necessary level of funds to address it (AIDS Funding Issues - Impact Aid, Early Intervention, 1990)
Proponents of the bill agreed that all citizens, cities, and health care delivery systems were in unprecedented trouble, and that AIDS therefore required a congressional response that would provide funds for research, treatment, prevention, and care. The merging of the moral issue with the crisis theme is evident in the following comments by Representative Waxman in a hearing in early 1990:
If there ever was an unfunded liability it is this epidemic. Because of years of misplaced moralizing about sex and drugs, the government has missed its opportunity to slow the spread of the virus, and now the weight of the inevitable caseload is coming crashing down on our hospitals and our public financing programs. . . . The sins of the Reagan prevention policy are now visited on the Bush payment plans. Having missed the opportunity to get the ounce of prevention, we now have to pay for the pounds and pounds of cure. . . . Unless we are prepared for the streets of New York to look like the streets of Calcutta, we must get ready to provide hospital, nursing home, home health, and hospice care for these people. . . . AIDS is creating a crisis in access to health care, in financing health care, and in delivering health care. (AIDS Funding Issues, Part 3, 1990, p. 1)
Social workers as change agents can be influential at all stages of policy development at many different levels, including that of local, regional, and national policy formulation. Social workers are tasked with using knowledge of the political process to intervene and educate at pivotal moments and in appropriate ways. Social workers need not be discouraged in the face of apparently overwhelming political and legislative problems, because it is possible to make a difference. We not only need to empower ourselves to more effectively empower our clients but as a profession, we also need to take the credit for our successes and teach others our viable strategies. Legislative advocacy and coalition building can continue to be used by social workers to effect change concerning other pressing social problems, such as violence, welfare reform, health care access, and civil rights.
As advocates, we must understand the possible roles that social workers may play in the country's political and legislative systems. The key social work tools for formulating policy are building issue definition and salience, using professional expertise to advise legislators, drawing media attention to the problem and proposed solutions, generating testimony and letters to lawmakers, meeting with lawmakers to advocate for the cause, training and organizing others to participate politically, and forging coalitions for advocacy and support (Dear & Patti, 1981; Halter, 1994; Mahaffey, 1982; Van Gheluwe & Barber, 1986; Wax, 1968). Social work educators must teach policy formulation strategies to all students and strive to instill in them a sense of efficacy in this realm. Social work practitioners at all levels can track and support legislative and policy issues through NASW and other social work or advocacy organizations.
Several social workers have commented on the need for increased coalition building and alliances in social action efforts (Dear & Patti, 1981; Halter, 1994; Rothman, 1995; Van Gheluwe & Barber, 1986; Wise, 1991). NORA is an example of what advocates in a coalition can accomplish. These social policy advocates recognized a policy window of opportunity, crafted model legislation, mobilized groups across a broad spectrum of interests, and educated legislators. With a social worker as head and NASW as a member, NORA embodied the spirit of social work's commitment to social justice.
The development of the CARE Act is a success story about social change, coalition building, positive government action, a pluralistic movement, and social work intervention on the national level. Constituency and coalitions were broad based, legislators were highly committed, and value conflicts were resolved through compromise. The U.S. government did respond to the growing AIDS crisis, even if the response to provide care was not timely or adequate, and the CARE Act was one of the shining moments in federal reaction to the pandemic. More remarkable was the fact that this piece of legislation occurred during an era when the federal deficit was higher than it had ever been (Phillips, 1990).
In a variety of ways, advocates must bring home to lawmakers the true impact of social problems on human lives. The effect of facilitating legislator's awareness of social problems is illustrated by a comment by Representative Jack Buechner (R) of Missouri, who during a House Task Force meeting in January, 1990, disclosed that one of his family members had AIDS: "It does take a kick in your soul to understand. When that happens, then we are able to translate that understanding into more compassionate legislation" (AIDS Funding Issue: Hearings before the Task Force, 1990).
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ABOUT THE AUTHOR
Cynthia Cannon Poindexter, PhD, is assistant professor, School of Social Work, Boston University, 264 Bay State Road, Boston, MA 02215. The author thanks Tom Sheridan for his valuable input and Regina Kulys for her guidance. The article is dedicated to the memory of Bill Edens, Jr., a friend and mentor who was a skilled legislative advocate.…
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Publication information: Article title: Promises in the Plague: Passage of the Ryan White Comprehensive AIDS Resources Emergency Act as a Case Study for Legislative Action. Contributors: Poindexter, Cynthia Cannon - Author. Journal title: Health and Social Work. Volume: 24. Issue: 1 Publication date: February 1999. Page number: 35+. © 1999 National Association of Social Workers. COPYRIGHT 1999 Gale Group.