CASE-MANAGING AIDS stances there were sufficiently unique that the projects in other cities could not simply be designed as San Francisco clones. Some of them, like New York, Los Angeles, and Miami, had similarly large numbers of cases but their health The premise is that much of the care and many of the support care systems, and their patient Services for AIDS can mixes, were very different. New York City, for example, had an extensive system of municipal acute be delivered in community settings care hospitals, and it had large that are less intensive numbers of cases among intravenous drug users. And although Miami, like San Francisco, had only one major municipal acute-care hospital, it too had a different mix of patients, including large numbers of Haitians. and restrictive than hospitals. Most of the other cities had much smaller case loads and were funded largely in the hope that by developing a community-based system of care while the numbers were still manageable, they would be able to avoid the near crises being experienced in certain hospitals in New York, Los Angeles, and Miami. But the factor that most distinguished all these cities from San Francisco was that none of them had anything like its large, well-organized gay community to draw upon, both as a source of volunteers and as a political force for government action. In a sense, the resources provided by the Robert Wood Johnson Foundation and the Public Health Service were intended to catalyze the process that had taken place spontaneously in San Francisco. Most of these projects are now only in their second year of operation, so it is still too early to tell how much of an impact they are having on patterns of patient care, costs, and other outcomes of potential interest to policymakers. Moreover, even after more time has elapsed, it will be extraordinarily difficult to isolate the effects of these case-managed systems of care from the effects of improvements in treatment, changes in service needs resulting from shifts in the types of patients with AIDS, and other changes unrelated to the systems themselves. Nevertheless, a number of important lessons are already emerging. First, the establishment of these systems is often an intensely political process. Issues arise both among the various providers being drawn into the consortium and between the providers and the community at large. Provider agencies and institutions are often reluctant to yield autonomy to the larger interests of the system, and sometimes there are differences in prioritiesor outright competition-among consortium members. Also, there is often a problem of unequal partnerships between the large public hospitals, which stand at the hub of the system, and the smaller community agencies, which may be completely overshadowed by them. One approach that seems to help diffuse some of these political tensions is to base project leadership at a well-established community agency generally perceived as neutral by the other providers. An example is the AIDS Arms Network, based at the Community Council of Greater Dallas. This organization has a long track record of bringing together agencies and institutions in Dallas to address community problems. A second example is Catholic Charities of New Orleans, which has taken the lead in that city. Within the community itself, a principal source of political friction has to do with the development of new community-based services for AIDS, such as nursing home care, institutional hospices, or supervised housing. A number of cities have run up against fierce neighborhood resistance, both because of fear of contagion and, in some cases, because of the link between AIDS and intravenous drug use. This is not unlike the resistance that has historically greeted the siting of substance-abuse treatment facilities or residences for the mentally retarded. As in those cases, positive political leadership is crucial. The county commissioners of Palm Beach County, Florida, set an important example by opening a 29-bed nursing home unit for AIDS at the county nursing home. Practical constraints A second important lesson is the critical role of financing. Current health insurance reimbursement policies, including those of most private insurers and Medicaid, SUMMER 1988 61 tend to favor hospitalization over out-of-hospital, community-based alternatives. But without adequate reimbursement-including enhanced reimbursement for the provision of AIDS care in existing community facilities (such as nursing homes)-—these services simply will not materialize. New Jersey has attempted to address this problem by securing a Medicaid Section 2176 Home and Community-Based Services Waiver for AIDS that expands the range of services normally covered. Under this waiver, Medicaid will pay for case management, medical day care, drug abuse treatment, and private nursing as alternatives to inpatient hospitalization for AIDS patients. New York State has taken a different approach, offering an enhanced Medicaid reimbursement rate to designated "AIDS Care Center" hospitals, which, in return, agree to establish an AIDS inpatient unit, an outpatient clinic, a home care program (either directly or under contract), and a variety of other services. A third set of lessons has to do with the implementation of case management. One of the biggest problems facing AIDS case managers in all the projects has been the dramatic increases in their individual case loads. The number of case managers simply has not kept pace with the number of cases, and as a result, the projects are developing various forms of patient triage. AID Atlanta, for example, has designated five different levels of need for its patients, with case management to be provided at corresponding levels of intensity. Dallas has separated out the assessment function: After assessing the patient's needs, an "intake specialist" assigns the patient either to a professional care coordinator or to a less intensive track staffed by volunteers. Such strategies, however, can only stretch case management so far. Beyond that point, additional case managers must be recruited in order for the process to work. Another problem facing many AIDS case managers is the shortage-or outright absence-of services to which to refer their patients. There has been a tendency to assume that once a patient is assigned to a case manager, his or her needs will somehow be met. While the case manager may indeed act as an advocate for the development of new services, case management cannot be the main initiator of those services. These problems are compounded by the decentralized nature of much of AIDS case management, even in San Francisco. Ideally, the system should have a single centralized administration, appropriately positioned to deploy the system's resources in ways that best meet the specific service needs of individual patients. Instead, responsibility for case management is frequently distributed, with each agency and institution spawning its own team of case managers who may or may not relate well to their counterparts elsewhere in the system. One of the projects that has come closest to truly centralized case management is the AIDS Arms Network in Dallas, which, it maintains, "works for the client and with other agencies and services in the community." The Network convenes weekly meetings with 33 affiliated agencies, both to review some of the toughest individual cases and to discuss broader system-level issues. The final lesson that has emerged so far from these projects is that they require a great deal of support and technical assistance, particularly at the management level. Although the grants are less than two years old, most of the projects have already undergone at least one change in leadership. The high turnover rate reflects the extraordinary demands that the epidemic is placing on these fledgling systems, and the high level of political, financial, and personal stress on the project directors. Elements of success The effort to develop case-managed, communitybased systems of care is not unique to AIDS. But what sets AIDS apart is the extraordinarily rapid increase in the case load. Policymakers are thus forced to consider radical solutions, and, in the process, to rethink some of the fundamentals of how we currently organize and finance our health and human services. The stakes are high in the present efforts to develop community-based systems of care for AIDS. If they fail, the burden on the major municipal hospitals will continue to worsen; eventually, public officials will be forced to consider more drastic options, such as the establishment of special sanitarium-like facilities for AIDS far removed from the patients' home communities. On the other hand, to the extent that they do succeed, case management systems could point the way for how we deal with numerous other chronic or degenerative conditions. Some of the elements necessary for these efforts to succeed include the following: 62 ISSUES IN SCIENCE AND TECHNOLOGY CASE-MANAGING AIDS ► A genuine commitment by the community's political leaders. The absence of leadership-the key to securing sufficient resources, overcoming interagency conflicts, and responding effectively to neighborhood resistance to the establishment of community-based AIDS services-has been one of the major impediments to system development. In addition, civic leaders, clergy, and other prominent community members can play important roles in establishing the tone of the public debate on AIDS-related issues. ▸ Flexible financing. In order for these communitybased systems to become a reality, mechanisms must be developed to finance their components, including out-of-hospital services, communitybased primary care, and the management of the overall systems. State and federal agencies must be directly involved in this process. For example, states that have not already done so may want to apply for Medicaid AIDS waivers, while those that have such waivers can take steps-such as streamlining eligibility procedures or increasing the number of eligibility workers-to increase the number of persons covered. States may also want to consider ways to better coordinate the diverse categorical funding streams that AIDS patients draw upon, such as welfare. Medicaid, foster care, and assistance for mental health, substance abuse, and housing. Support for strong case management. This includes both financial support for an adequate supply of well-trained case managers and political support to establish the centralization of case management. In this way, case managers may access any needed services within the system on behalf of their patients. ► Support for community-based AIDS agencies, which are on the front lines and work closely with the patient population. These agencies are vital to the success of the case management approach. Yet many of them are suffering from problems of rapid growth and burnout, as evidenced by the high turnover rates at both the staff and management levels. Again, both financial and political support are needed, as well as extensive technical assistance on issues ranging from financial management and grantsmanship to board development and community relations. AIDS has precipitated a health care crisis in this country and there is no question that, in one way or another, the epidemic will leave a permanent mark on our health care system. Whether or not the effect is positive will depend in large measure on the willingness of policymakers to confront the inadequacies in the current system head on and to take some of the bold steps that may be required to overcome them. Testing the case-managed, community-based model of care, and learning from its successes and problems, will be important parts of that process. Recommended reading "AIDS Care. The San Francisco Model,” The Journal of Ambulatory Care Management 11. no. 2 (May 1988). 14-18 DP Andrulis and V. S. Beers. "Coordinating Hospital and Community-Based Care for AIDS Patients. The Journal of Ambulafory Care Management 11, no. 2 (May 1988) 5-13 D. P. Andrulis. J. D. Bentley, and L. S. Gage. "The Provision and Financing of Medical Care for AIDS Patients in US Public and Private Teaching Hospitals." Journal of the American Medical Association 258, no. 10 (September 11, 1987): 1343-1346. P. S. Arno. "The Nonprofit Sector's Response to the AIDS Epidemic. Community-Based Services in San Francisco." American Journal of Public Health 76. no 11 (November 1986): 1325-1330, "Coolfont Report. A PHS Plan for Prevention and Control of AIDS and the AIDS Virus." Public Health Reports 101 (JulyAugust 1986) 341-348. M. G. Henderson, B. A. Souder, and A. Bergman. "Measuring Efficiencies of Managed Care," Business and Health (October 1987): 43-46. S. Laudicina. N. Goldfield, and R. Cohen, "Financing for AIDS Care." The Journal of Ambulatory Care Management 11, no. 2 (May 1988) 55-66. J. C. Merrill, "Defining Case Management.” Business and Health (July/August 1985): 5-9. New York State Department of Health. “AIDS in New York State through 1987" March 1988. A. A. Scitovsky and D P Rice. "The Cost of AIDS." Issues in Science and Technology 4, no. 1 (Fall 1987): 61-66. SUMMER 1988 63 Mr. WEISS. Thank you, Dr. Jellinek. Mr. Smith, let me start with you for questions. Mr. LARKIN SMITH. I would address it to all three panelists. Last month in an international meeting on AIDS in New York City, health commissioner, Dr. Stephen Joseph, said that all people found to be infected by AIDS should be reported to health authorities and their sexual partners or shared needle partners should be contacted. Why should the Congress of the United States support proposals such as this one? Dr. ARNO. If I understood the question correctly, why should the Congress support that action? Mr. LARKIN SMITH. Yes, or should not, if you have an opinion. Dr. ARNO. I do not believe it would be appropriate for the Congress to support that action. I think the problems that the commissioner ran into in New York reflect concerns that by mandating such a policy, you would drive further underground the very people you would like to reach through public health, education, counseling, and medical care systems. While it seems on the surface that it may be helpful, in reality, it probably would have a negative impact on public health. Mr. LARKIN SMITH. Dr. Brown. Dr. BROWN. I would echo some of the comments of my colleagues at the table with regard to that. I would in fact like to underscore some other issues, if I might. If you mandate the reporting of this information for the sexual partners and if you have a situation of voluntary testing, then that becomes de facto, mandatory testing in some settings. For example, some hospital settings. The other issue has to do with the fact of responsibility. Once we have this information, then what do we do with it in terms of care for these individuals. My experience in a city that in fact has a lot is that there is still not enough. We identify a number of people who have the risk of being infected or who are infected and do not have the facilities to really provide them the same standards of care that the Centers for Disease Control states should be provided for asymptomatic patients. How could we in good conscience articulate or support a policy that we do not have the resources to follow through? It seems to me that this policy is flawed and it is flawed for that reason among others. Mr. LARKIN SMITH. Dr. Jellinek. Dr. JELLINEK. The foundation is not really in a position to take a position on any of these issues but I could reflect for you some of the comments from our project directors. Obviously, this is an issue of grave concern to people out in the field. We have regular meetings with our project directors. They expressed great concern at this recommendation and Dr. Joseph's article in the New York Times for the reasons that Dr. Arno indicated. Their concern is that legislation of this type might in fact drive people underground and, thus, hamper efforts to contain the epidemic rather than expedite those efforts. Mr. LARKIN SMITH. What steps would you recommend that Congress take to prevent the spread of AIDS? Dr. BROWN. If I may, I would suggest a policy that encourages individuals to come forth to be tested and know of their HIV status. How to do that, you are going to get a number of different ideas. I would agree that and I can only give you my own bias. I think testing probably should be more available and that responses to that information should also be made more available. Those persons who test positive should be provided isoniazid if they are also tuberculin positive. Vaccinations against pneumococal and other infections that are associated with HIV disease. These are things that I believe Congress can encourage the States to be able to provide. As I mentioned about the block grant system, I believe there is a role for Congress to investigate how this money is being utilized and what happens with it, what is the true cost to America when you give them money through the block grant mechanism and see that it gets to the parties in question before many months, if not years later, after the money has been allocated. That to me seems unethical in the sense that we have clearly limited resources that have been held in someone's magical pot that is not getting to the populations that I think was the intent of this Congress. Mr. LARKIN SMITH. Dr. Arno. Dr. ARNO. Let me just focus on one point and echo a comment of my colleague, Dr. Brown. We must seriously begin to address the twin tragedies of drug abuse and HIV disease. If we do not, we will never solve or end the AIDS epidemic. Aside from expanding treatment capacity, which we must do, we must integrate primary medical care in our inner cities with drug treatment programs. Conversely, we ought to be thinking about providing drug treatment services in our primary care settings. These initiatives are just beginning to be thought about but we need to move strongly and forcefully on them immediately. Dr. JELLINEK. The foundation's approach to your question has been to invest in the areas of prevention and public information. As I indicated, we have invested in four areas: Services, prevention, policy research, and public information. In looking at the area of prevention, we discovered that although there was a large amount of Federal money being allocated to preventive education, much of that money was going to State health departments and very little of it was actually getting down to the front lines. During 1987, we received a very large number of unsolicited requests for support for preventive education from community groups who felt they were particularly close to the problem. That in part is what stimulated us to issue the very open-ended call for prevention and service grants last year. We also looked at the possibility of supporting a large scale media campaign using television and radio and so forth but elected to use the more targeted, focused approach in the interest of reaching those of greatest risk, either for transmitting or for becoming infected by the virus. Mr. LARKIN SMITH. When you say education, does that include a change in sexual behavior? Dr. JELLINEK. Education about the need to change sexual behavior: yes. Mr. LARKIN SMITH. For any of the panelists, should AIDS patients be given preferential treatment over cancer patients and others with expedited availability of experimental drugs? |