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Introduction: Securing the Legacy of Ryan White

As the nation enters its third decade of the HIV/AIDS1 epidemic, it faces a future of both promise and complex challenges. The advances and accomplishments in prevention and treatment of the disease have made an astonishing difference in health and well-being for those with access to the treatments and the ability to adhere to the regimens. At the same time, the changing demographics of the population affected by the epidemic have raised new challenges that the current system of care is less equipped to address. Transmission rates in the United States leveled in the late 1990s, but there have not been further reductions in new infections since then. Furthermore, many who could benefit from current treatment and care methods do not receive them. As a result, the disease remains a key public health problem for the nation.

In 2000, the Kaiser Family Foundation conducted a national survey of American views on HIV/AIDS. The survey revealed that Americans considered HIV/AIDS one of the most urgent health concerns facing the nation, second only to cancer. Eighty percent believed that access to care and treatment for HIV/AIDS is a problem in this country and that access is influenced by income, race, and gender (Kaiser Family Foundation, 2001).

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Human Immunodeficiency Virus (HIV) is the virus that causes acquired immune deficiency syndrome (AIDS). The Committee uses HIV to refer to the virus and AIDS or HIV disease to refer to the illness it causes. The Committee uses HIV/AIDS as a global term to refer to the spectrum of issues surrounding the epidemic, from prevention to care and treatment.



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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White 1 Introduction: Securing the Legacy of Ryan White As the nation enters its third decade of the HIV/AIDS1 epidemic, it faces a future of both promise and complex challenges. The advances and accomplishments in prevention and treatment of the disease have made an astonishing difference in health and well-being for those with access to the treatments and the ability to adhere to the regimens. At the same time, the changing demographics of the population affected by the epidemic have raised new challenges that the current system of care is less equipped to address. Transmission rates in the United States leveled in the late 1990s, but there have not been further reductions in new infections since then. Furthermore, many who could benefit from current treatment and care methods do not receive them. As a result, the disease remains a key public health problem for the nation. In 2000, the Kaiser Family Foundation conducted a national survey of American views on HIV/AIDS. The survey revealed that Americans considered HIV/AIDS one of the most urgent health concerns facing the nation, second only to cancer. Eighty percent believed that access to care and treatment for HIV/AIDS is a problem in this country and that access is influenced by income, race, and gender (Kaiser Family Foundation, 2001). 1   Human Immunodeficiency Virus (HIV) is the virus that causes acquired immune deficiency syndrome (AIDS). The Committee uses HIV to refer to the virus and AIDS or HIV disease to refer to the illness it causes. The Committee uses HIV/AIDS as a global term to refer to the spectrum of issues surrounding the epidemic, from prevention to care and treatment.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Among minorities, who are disproportionately affected by the epidemic, the disease was ranked as the top national health concern. In this context of changing demographics, improved treatment options, and continued widespread public concern, Congress passed the 2000 reauthorization of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act (CARE Act). The issues before legislators as they contemplated the future of the federal response to the HIV/AIDS epidemic included equitable resource allocation, reliable disease surveillance, and disparities in access to care and life-saving medications for the poor and uninsured. In the text of the reauthorization, the Institute of Medicine was charged to form two expert Committees to look at the future of the federal response to the HIV/AIDS epidemic. The two Committees—the Committee on Public Financing and Delivery of HIV Care and the Committee on the Ryan White CARE Act: Data for Resource Allocation, Planning and Evaluation—were intended to work independently but in parallel and to release their findings within months of one another. One report, from the Committee on the Ryan White CARE Act, addresses several specific questions raised by Congress about the current allocation formulas, the determination of resource needs in different jurisdictions, and the assessment of care quality. Although it addresses some long-range issues, it is intended to provide guidance on issues currently faced by Congress, the Health Resources and Services Administration (HRSA), and grantees in the administration of the CARE Act. This report, from the Committee on Public Financing and Delivery of HIV Care, is intended to provide a vision of the HIV care system necessary to meet the challenges of the third decade of the AIDS epidemic and beyond. THE RYAN WHITE CARE ACT Ryan White died 4 months before the legislation that bears his name was signed into law. The teenager, who had contracted the virus through blood products used to treat his hemophilia, had become the face of the epidemic for the nation in 1985, when he began his successful fight to be allowed to attend school with his classmates in Indiana. He had been ostracized, bullied, and threatened because he was infected with HIV, and his struggle to restore dignity to those living with the disease touched the nation (Johnson, 1990; GPO, 2000). The CARE Act (see Box 1-1) bears the following stated purpose: [T]o 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 non-profit entities to provide for the development, organization, coordination

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White   BOX 1-1 The Ryan White CARE Act The Ryan White CARE Act funds outpatient care and support services, including medical care, dental care, case management, and prescription drugs through the AIDS Drug Assistance Program (ADAP). In some cases it can also be used to fund insurance continuation. CARE Act funds do not pay for inpatient care or long-term institutional care. CARE Act-funded services are provided to more than half a million individuals each year, making it the federal government’s largest HIV-specific care program. The CARE Act is organized into four titles and three targeted components: Title I Title I provides emergency assistance to the Eligible Metropolitan Areas (EMAs) that are most severely affected by the epidemic. There are currently 51 EMAs in 28 states and territories including Puerto Rico and the District of Columbia. Title I funds are used to provide medical and ancillary/support services. To receive Title I funds, an EMA must establish an HIV Health Services Planning Council representing various stakeholders within the community to allocate funds. Title II Title II provides grants to all states and eligible territories and funds the ADAP. Title II funds health care and support services, as well as health insurance continuation. Prescription drugs are funded under ADAP, which constitutes well over half of total Title II funds. Title III Title III grants are provided directly from the federal government to the eligible organization, which must be a public or private nonprofit entity that is currently providing or intends to provide comprehensive HIV primary care. There are three grant programs under Title III: Capacity Building Grant Program, Planning Grant Program, and Early Intervention Services. Title IV Title IV provides medical care as well as social, outreach, and prevention services to children, youth, and women living with HIV and their families. Special Projects of National Significance (SPNS) SPNS grants are provided to eligible entities to establish innovative models of care. The purpose of the SPNS program is to evaluate the effectiveness of programs and foster the development of new ideas. The AIDS Education and Training Centers (AETCs) AETC grants support a network of 11 regional centers plus associated sites that provide education and training to health care providers serving people living with HIV/AIDS.  

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White   Dental Reimbursement Program and Community-Based Dental Partnership Program The Dental Reimbursement Program provides reimbursement to dental schools, postdoctoral dental education programs, and dental hygiene education programs for nonreimbursed costs of providing dental care to people living with HIV/AIDS. The Community-Based Dental Partnership program provides funds to increase access to oral health care among rural and urban HIV-positive communities. SOURCE: HRSA, 2001. and operation of more effective and cost efficient systems for the delivery of essential services to individuals and families with HIV disease (P.L. 101-381). The dry words of the legislation belied the desperate need for these “systems for the delivery of essential services.” AIDS is a disease that impoverishes and disables before it kills, leaving the individuals who have it disproportionately reliant on the public sector for care. The CARE Act grew from the realization in Congress that a coordinated federal response to the AIDS care crisis was necessary. The testimony of overwhelmed state and city government officials, public hospital administrators, people living with the disease, and their families had convinced members of both chambers of Congress that emergency relief was warranted. The CARE Act provides funding for primary medical care and support services for low-income, uninsured, and underinsured populations with HIV disease. Though exact client counts are impossible, HRSA estimates that more than half a million individuals each year receive medical care, prescription drugs, and ancillary services paid for with CARE Act funds. This makes the CARE Act the federal government’s largest HIV-specific care program, representing 22 percent of federal spending on health care for individuals with HIV/AIDS (Kates, 2004). When the CARE Act was authorized in 1990, the experience of treating and living with HIV/AIDS was different than it is today. Treatment options were few, and the only antiretroviral medication approved for use (AZT) was of limited effectiveness. The focus of care, out of necessity, was on very expensive inpatient hospital and end-of-life care along with the social services that supported individuals and their families through progressively worse illness and disability.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Today the treatment outlook for HIV has changed dramatically. In 1996, highly active antiretroviral therapy (HAART) became the standard of treatment.2 When used appropriately, HAART can delay disability and death indefinitely for a significant proportion of individuals using it. The focus of care has moved from inpatient services to outpatient services as HIV has begun to look more like a serious but chronic illness for those in treatment and less like a debilitating, fatal illness. These changes have had a profound impact on individuals infected with HIV, providers of HIV/AIDS care, and the care system itself. Individuals infected with HIV have greater opportunities to remain healthy than ever before, provided they have access to appropriate treatment, can manage the disease, and adhere to treatment regimens. Providers enjoy the possibility of improved outcomes for their patients, but must face the pressures of providing care for the chronically ill in a system that was not designed to meet those needs. The interrelated structure and financing of the care system must be reassessed and modified where necessary to allow adaptation to the changing needs of the population served as well as changing treatments. The CARE Act has been responsive to changes in the epidemic. Since its inception the CARE Act has been reauthorized twice, in 1996 and again in 2000. Congress has used the reauthorization process to evaluate the CARE Act and amend it as necessary to focus, refine, and evaluate the impact of the legislation and the policies to implement it. The General Accounting Office (GAO) has studied CARE Act programs since their inception, examining funding formulas, equity, use of funds, and access to services that Congress has used to guide changes to the legislation (GAO, 1995, 2000; Heinrich, 2000; Nadel, 1995). The GAO found inequities in funding allocations across geographic locations in both 1995 and 2000, but also that women and minorities were using CARE Act programs in numbers proportionate to the disease’s impact on these populations. Congress used the GAO’s finding to address the unintended consequences of policies stemming from earlier legislation and to assess how well the CARE Act fulfills 2   The Committee uses the acronym HAART throughout the report to mean multidrug antiretroviral therapy. This regimen typically consists of a combination of the three classes of antiretroviral drugs that are effective against HIV: nucleoside reverse transcriptase inhibitors (nRTIs), non-nucleoside reverse transcriptase inhibitors (nnRTIs), and HIV-specific protease inhibitors (PIs). Essentially all regimens use at least two nRTIs, typically combined with one nnRTI or one to two PI. Some regimens use three or four nRTIs without an nnRTI or a PI. One-drug antiretroviral therapy, or monotherapy, is obsolete and not recommended by current treatment guidelines. Though the more accurate term, combination antiretroviral therapy—CART—is coming into wider usage, the Committee believes that the term HAART will be familiar to the broadest audience.

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White its mission, along with whether this mission reflects the current needs of an evolving epidemic.3 THE CHARGE TO THE COMMITTEE Though framed within the text of the CARE Act, the congressional charge specifically directs the Committee to assess the role of other programs and payers, particularly Medicaid, in providing care for those infected with HIV. The Synopsis of the Charge to the Expert Panel from the Health Resources and Services Administration—the agency tasked by Congress with oversight of this inquiry—reads, in part: “The panel is being asked to examine the feasibility of creating a publicly funded system of care that is accessible, equitable, cost-effective, of high quality, comprehensive, and easily negotiable. One option specifically identified in the legislation is to extend Medicaid coverage to people in early stages of HIV infection. The panel is also to look at the costs stemming from current barriers to care as well as the costs and savings for affected programs from proposed changes in public financing for HIV care (HRSA, 2001).” HRSA identifies three broad challenges to the system: (1) changes in the epidemic and increasing needs for support services, (2) state-to-state variability in access to publicly funded care, and (3) disparities in access to optimal treatment regimens. In addition, HRSA identifies a dozen issues to which the Committee should pay “particular attention,” including reducing disparities in access to care and health outcomes and improving coordination in the delivery of services. Finally, HRSA states that the agency is “seeking solutions that will allow for the creation of an easily negotiable system of care that is equitable, cost-effective, of high quality, and comprehensive.” The Committee interpreted this broad charge as a challenge to set out a vision of a care system that meets the needs and makes the most of the opportunities presented by the third decade of the HIV/AIDS epidemic and beyond. Accordingly, the Committee’s recommendations outline a program that is sweeping and comprehensive. Early in the process, the Committee determined that one of the great challenges of defining a vision of an HIV care system would be ensuring 3   For example, the first reauthorization, in 1996, addressed differences in funding levels by modifying the allocation formula. The first reauthorization also contained revisions to planning council membership and administration after conflict of interest issues were raised regarding the selection of contractors and identification of priorities. The second reauthorization, in 2000, responded to treatment advances (HAART) and new research that showed a significant proportion of those with HIV were not in care by emphasizing HIV surveillance and outreach programs (Palen, 2003).

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White that the recommendations were developed within the broader context of the American health care system. It is, perhaps, instructive that in other developed countries with significant HIV-infected populations—such as the United Kingdom and Canada—national health insurance programs pay for most or all necessary medical care for residents, and do not require disease-specific programs. In those countries, the Committee is not aware of—and there would be little need for—large HIV-specific care programs that seek to “fill the gaps” in existing insurance systems. In this country, different segments of the population obtain health insurance through a variety of public and private programs. Private health insurance is provided primarily through employers. Medicare, Medicaid, and the Department of Veterans Affairs (VA) fill significant (but not all) gaps in coverage for the elderly and poor. Many workers lack coverage, and the number of uninsured continues to grow. Even in this context, however, the political consensus necessary to create more comprehensive health insurance solutions has not emerged. Given these circumstances, it is a subpopulation of the uninsured and underinsured—those who are HIV infected—who are the intended beneficiaries of the CARE Act and the focus of the Committee’s charge. The Committee accepted the earlier decision by Congress to create and sustain HIV-specific programs as the starting point and framework for its work. There are both humanitarian and public health reasons for a program targeted to help those infected with HIV. First, the human tragedy of people in large numbers unable to work, impoverished by the disease, and dying painfully and rapidly led Congress originally to pass and fund the CARE Act. Second, because HIV is a transmissible illness, providing care also provides opportunities to arrest the spread of the virus at the population level. In this way, a narrowly targeted program serves the interest of the public at large and justifies the dedication of public money to that purpose, a decision made by Congress in 1990. The conclusions and recommendations presented in this report represent the Committee’s effort to develop a comprehensive vision of a system of care that will improve the quality and duration of life for those with HIV and promote effective management of the epidemic by providing access to comprehensive care to the greatest number of low-income individuals with HIV infection. Throughout its deliberations, the Committee sought the strongest evidence available for its conclusions and carefully weighed the feasibility of its recommendations. The Committee gathered and analyzed information from a variety of sources. During public meetings, it heard testimony from many individuals, including advocates, policy makers, federal and state officials, and people living with HIV/AIDS. In addition, the Committee solicited the input and advice from a liaison panel made up of representatives of the HIV/AIDS

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White community. Several papers were commissioned from experts on topics including the current system of financing care, HIV and comorbid substance abuse, and the efficacy and financing of ancillary services. Published findings provided additional evidence for conclusions and recommendations. Input from administrators of HIV care systems and providers of HIV care enhanced the Committee’s understanding of the daily operations of the publicly funded system of care. Finally, the Committee relied on the individual and collective expertise of its members to make informed judgments where data were scarce and to weigh the various policy options under consideration. The report is organized into six chapters, including this introduction. Chapter 2 addresses the changes in the epidemic over the past two decades in terms of treatment options and affected populations and the challenges posed by these changes. Chapter 3 examines the current financing and delivery system for HIV care. Portions of this chapter are taken from a paper commissioned by the Committee, “Financing HIV/AIDS Care: A Quilt with Many Holes,” and included in the report as Appendix D. This paper is an update of a comprehensive overview of federal financing of HIV/AIDS care published by the Kaiser Family Foundation in 2000. Chapter 4 addresses barriers and problems faced by the individuals attempting to access and navigate this system. As part of its work, the Committee examined several policy options as vehicles for improving the current system of care to meet the standards of a desirable system. This examination is presented in Chapter 5. All of the options provide, to varying degrees, ways for expanding access to HIV care and the opportunity to eliminate disparities and discontinuities. The Committee’s recommendations are contained in Chapter 6 along with the estimated budget and health impact of the proposed changes. The Committee developed an HIV care cost model to determine these estimates; a complete description of the model is presented in Appendix A. Appendix B provides a brief overview of Ryan White CARE Act fund allocation formulas. Because of the substantial impact of HIV on individuals with mental illness and substance abuse disorders, as well as the impact of these illnesses on the treatment of HIV, the Committee has included more in-depth examinations of these topics as Appendixes C and E. The federal response to the needs of low-income individuals with HIV disease has grown from small, isolated grants into a $2 billion-a-year comprehensive program that provides care to those most in need. But this is not enough, given the changes in the epidemic, the promise of improved treatment on the one hand, and the challenges of increasingly vulnerable infected populations on the other. A key question for the third decade is this: How can the publicly funded HIV/AIDS care system operate more equitably and efficiently to fulfill the promise and mission of the Ryan White CARE Act?

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Public Financing and Delivery of Hiv/Aids Care: Securing the Legacy of Ryan White Findings: Congress, through legislative action, distinguished HIV/AIDS as a disease warranting focused attention and resources. Through the Ryan White CARE Act, the federal government provides funding for primary medical care and support services for low-income, uninsured, and underinsured populations with HIV disease. REFERENCES GAO (General Accounting Office). 1995. Ryan White CARE Act of 1990: Opportunities Are Available to Enhance Funding Equity. GAO/T-HEHS-95-91. Washington, DC: GAO. GAO. 2000. HIV/AIDS: Use of Ryan White CARE Act and Other Assistance Grant Funds. Report to Congressional Requesters. GAO/HEHS-00-54. Washington, DC: GAO. GPO (Government Printing Office). 2000. Ryan White CARE Act Amendments of 2000: Managers’ statement of explanation. Congressional Record H8840–H8843. Washington, DC: GPO. Heinrich J, Director, Health Care, Public Health Issues, General Accounting Office. 2000. Ryan White CARE Act: Opportunities to Enhance Funding Equity. Statement at the July 11, 2000, hearing of the Subcommittee on Health and Environment, Committee on Commerce, U.S. House of Representatives. GAO/T-HEHS-00-150. Washington, DC: GAO. HRSA (Health Resources and Services Administration). 2001. The Ryan White CARE Act Fact Sheets. [Online]. Available: http://www.hab.hrsa.gov [accessed March 21, 2003]. Johnson D. 1990, April 9. Ryan White dies of AIDS; his struggle helped pierce myths. The New York Times. p. D10. Kaiser Family Foundation. 2001. The AIDS Epidemic at 20 Years: The View from America. A National Survey of Americans on HIV/AIDS. Washington, DC: Kaiser Family Foundation. Kates J. 2004. Financing HIV/AIDS Care: A Quilt with Many Holes. Paper prepared for the Committee on Public Financing and Delivery of HIV Care, Institute of Medicine. Washington, DC: Kaiser Family Foundation. Nadel MV, Associate Director, National and Public Health Issues, General Accounting Office. 1995. Ryan White CARE Act: Access to Services by Minorities, Women, and Substance Abusers. Statement at the July 17, 1995, hearing of the Subcommittee on Human Resources and Intergovernmental Relations, Committee on Government Reform and Oversight, U.S. House of Representatives. GAO/HEHS-95-212. Washington, DC: GAO. Palen J. 2003. Legislative History of the Ryan White CARE Act. Paper prepared for the Committee on Public Financing and Delivery of HIV Care, Institute of Medicine. Washington, DC: Unpublished.