Is it time for a comprehensive aids medical center?

Is it time for a comprehensive aids medical center?

SPECIAL ARTICLE Is It Time for a Comprehensive AIDS Medical Center? EZEKIEL J. EMANUEL, M.D., Ph.D., DAVID S. WEINBERG, M.D., Bos~o~, Massachusetts ...

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SPECIAL ARTICLE

Is It Time for a Comprehensive AIDS Medical Center? EZEKIEL J. EMANUEL, M.D., Ph.D., DAVID S. WEINBERG, M.D., Bos~o~, Massachusetts

T

he inexorable rise in the incidence and prevalence of human immunodeficiency virus (HIV) infection has already had a considerable impact on the delivery of health care in the United States. Many commentators have called for more aggressive reform of health and social policies to combat this epidemic [l-3]. Among the early suggestions was a dedicated acquired immunodeficiency syndrome (AIDS) hospital [4]. This idea was implemented in Texas during the mid-1980s [5]. Perceived by some as the contemporary equivalent of a leper colony, it failed within months of opening [6]. Advances in the detection and treatment of AIDS and HIV-related diseases, as well as the steadily positive shift in public opinion toward persons with HIV, warrant the reconsideration of an AIDS hospital or medical center. Recently, Rothman and Tynan [7] have argued against such a medical center because it might “promote negative stereotyping and bias” against HIV-infected patients. By emulating modern cancer institutes as well as the great public hospitals of the past, we believe such an AIDS medical center could be a model institution that provides high quality, compassionate patient care, research, and social outreach and educational programs. Historical precedent, ethical considerations, and practical arguments coupled with continuing medical advances provide the justification for the reintroduction of this option.

THE RATIONALEFORAN AIDS MEDICAL CENTER In recent years, rapid advances in medical knowledge have transformed our understanding of the natural history of HIV infection from one of imminent death to a more chronic, albeit ultimately, terminal illness [8]. The advent of the HIV antibody test allows physicians to diagnose patients with HIV infection while asymptomatic. Several studies have made it increasingly clear that the period of time from antibody conversion to cliniFrom the Department of Medicine, Beth Massachusetts. Requests for reprints should be addressed to Department of Medicine, Beth Israel Hospital, Boston, Massachusetts 02215. Current address of Dr. Emanuel: Dana Farber Massachusetts. Manuscript submitted December 12, 1990, form April 5, 1991.

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cal manifestations of immune deficiency is measured not in months but in many years [9]. This provides the possibility of early intervention to prevent or at least to forestall many sequelae of HIV infection [lo]. Second, with the developing knowledge of the natural history of HIV infection and the prognostic significance of various markers, such as the CD4 lymphocyte count, physicians are better able to predict an individual patient’s course and medical needs, especially the likelihood of developing a pre-morbid complication of HIV infection [11,12]. Third, and most importantly, there is now partially effective therapy for HIV infection as well as prophylaxis and treatment for many associated opportunistic infections. Initial studies demonstrated that zidovudine (AZT) can prolong survival in patients with full-blown AIDS and delay the onset of AIDS in asymptomatic HIV-infected patients [ 131. Additional studies have suggested that such benefits can be realized at relatively low dosages, avoiding many of the most serious side effects of AZT, particularly bone marrow suppression [ 141. Other antiviral drugs, such as dd1, and immune modulator therapies are now undergoing clinical trials [l&16]. Finally, many experts predict the imminent use of synergistic combinations of several antiviral agents that inhibit HIV at different stages of cell infection and viral replication. Such combination chemotherapy should, in theory, maximize efficacy while minimizing viral resistance and systemic side effects. In the near future, therefore, physicians may be able to provide many chemotherapeutic interventions to forestall the development of frank AIDS and prolong the asymptomatic phase of HIV infection. Collectively, these clinical advances have and will increasingly transform the care of patients with HIV infection. Changes in the diagnosis and treatment of HIV infection have also affected the demography of AIDS. Effective interventions in asymptomatic HIV infection have multiplied the number of patients who require and should receive regular medical care for this disease. Conceivably, early screening and knowledge of the availability of effective care will prompt even greater willingness of “atrisk” communities to come forward [17]. Although conclusive data are not yet available, early intervention that prolongs progression to AIDS should translate into extended survival for asymptomatic carriers of the HIV virus. As the HIV mortality rate

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decreases, the prevalence of HIV infection will rise sharply. Furthermore, the incidence continues to mount. To date, there has been a cumulative total of more than 100,000 AIDS patients. Estimates of asymptomatic HIV-infected patients range from 1 to 1.5 million in the United States alone. According to projections by the Centers for Disease Control, the year 1993will produce as many as 100,000new cases of AIDS [18]. Undercounting could imply even worse figures [19,20].Furthermore, the scope of this epidemic is widening across age, sex, racial, and geographic barriers. No longer a disease of young white urban males, AIDS is the sixth leading killer among minority children, the fourth leading killer among black men and women between 25 and 44 years of age, and among the 10 leading causes of death in white women [21]. These changes in the medical and demographic aspects of AIDS have influenced the public’s attitude towards AIDS and AIDS patients. When AIDS was initially associated with homosexuality and later with drug abuse, many people were unsympathetic to patients with AIDS. While AIDS remains -and will probably remain-a disease predominately of marginalized members of American society, the increased knowledge about AIDS appears to be dissipating the initial prejudice and creating understanding, even sympathy. Today, the President can maintain that the proper posture to AIDS patients is one of caring rather than condemnation [22], and a variety of public opinion polls demonstrate an increasingly sympathetic societal response.

THE MODELOF AN AIDS MEDICALCENTER These recent changes in the medical and social aspects of HIV infection make an AIDS medical center a realistic possibility [3,4,7,23]. Clearly, the objective of any such center must be broad. First, it should provide and, where none is available, develop the best available therapies and prophylactic interventions against HIV-related diseases. Such an institution should, therefore, be both a basic and clinical research center. Second, such an institution should serve as a model social service institution, devising and coordinating novel outreach, counseling, and continuing care services for HIV-infected patients. Third, an AIDS medical center should serve as an information and resource base for all aspects of the AIDS crisis, ranging from specific information about treatment options for the primary care physician to general education about various aspects of HIV disease for health care professionals and the public. To achieve these objectives for a significant number of patients, an AIDS medical center must be designed mainly to provide outpatient care. On-site

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clinics would be the primary locale for ongoing care and the administration of clinical trials. An AIDS medical center would also require a smaller inpatient facility for some drug trials, for patients who develop significant complications of therapies or the disease itself, and for selected patients who enter the terminal phase of HIV infection but who require high levels of medical and nursing care that cannot be obtained in hospice or home. A case-management system combining the skills of nurses, social workers, and occupational therapists with those of physicians would be most effective in facilitating continuity of care in and out of the hospital. Importantly, while long-term care for AIDS patients must remain a national priority, the value of the proposed center would be undermined if it were to become a facility primarily involved with the inpatient care of terminally ill patients. Strict limitations on the use of inpatient beds would be required. The professional staff of such a medical center should be composed of two groups. The first group includes physicians, scientists, nurses, and others who will devote themselves to patient care and research into HIV and its complications. These providers would constitute the permanent clinical and research staff of an AIDS hospital. The second group would be houseofficers, drawn from all of the hospitals in the surrounding community, to rotate through the inpatient services and clinics for brief periods of time. The houseofficers would be supervised and taught by the permanent staff physicians. Other types of health care professionals desiring greater expertise in AIDS-related care could follow a similar training program.

HISTORICALPRECEDENTSFORAN AIDS MEDICALCENTER There are two institutional precedents for such an AIDS medical center: cancer institutes and the great public hospitals. Cancer was once like AIDS: feared as a death sentence; shrouded in mystery, referred to in euphemism or not at all; cancer patients were often shunned by friends, fellow workers, and the general public. Today much of the biology of cancer is understood; cures for some cancers and life-prolonging chemotherapeutic regimens for many others are available. Hence, the institutes especially established to provide care for cancer patients provide an excellent paradigm both in their objectives and their structure for a future AIDS medical center. Prior to 1950, there were some 20 cancer hospitals, most of which were founded and funded by private philanthropists [24]. It was not until the late 1950s and 1960s with the development of effective cancer therapies that extensive federal participaJuly 1991

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tion in the creation and funding of clinical institutes for cancer treatment and researcharose.In particular, the federal government beganfunding the developmentof clinical researchcentersto participate in trials of chemotherapeuticregimensand to facilitate the application of basic researchadvancesto clinical problems [25]. In 1970,a panel reporting to the Senatesummarizedthe arguments for establishment and federal funding of regional cancerinstitutes in terms that can be directly applied to AIDS: The solution to the cancer problem lends itself to a multi-disciplinary effort, where teams of highly qualified specialists are available to interact on problems of research, both clinical and non-clinical, teaching, diagnosis, prevention programs, and the development of improved methods in the delivery of medical care, including rehabilitation . . . [There needs to be] a critical mass of scientists and physicians committed to the cooperative solution of the cancer problem, of research facilities, of patients, and of financial and other resources. This is simply, another way of saying that the comprehensive cancer center offers the best organizational structure for the expanded attack on cancer [26].

Subsequently, cancer institutes proliferated with federal support becauseit wasrecognizedthat they could serveas the fulcrum for (1) developingbasic scienceand clinical researchinto “prevention, detection, diagnosis,treatment, and rehabilitation;” (2) coordinatingthe most advancedclinical services for cancerpatients; (3) distributing information to both the medical professionand the public; and (4) training of physiciansand other health carepersonnel in care of cancerpatients. Similarly, the structure of most cancerinstitutes can provide a model for an AIDS medical centem, These institutes havelarge outpatient facilities for administering chemotherapyand providing ambulatory care,with relatively smaller inpatient facilities for treating infectious complicationsof therapy and for provision of more complex and experimental chemotherapeuticregimens.The medical staff is usually involved in both basicresearchand clinical care. These facilities coordinate many social services specific to cancerpatients, as well as provide training for fellows and houseofficersof related medical schools. The great public city hospitals offer a complementary model for an AIDS medical center.In recent decades,the nature of most public hospitals has been radically altered: budgets have been reduced,facilities havebeenallowedto decaywithout modernization, total bedshave beendrastically reduced,and public support haswithered. In the early and middle parts of this century,however,public 76

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hospitals of large cities, such as Boston City, the Baltimore City Hospitals, and Bellevue, were amongthe finest health carefacilities in the nation, providing high quality careto the poor and creating superbcentersfor researchand training. Thesehospitals providea model for an AIDS hospital in three respects.First, they were establishedand publicly funded to provide care for the poor and socially marginal or stigmatized membersof society.These public hospitals demonstratedthat it was possible to provide carefor the poorthat rivaled or exceeded care provided patients in exclusive private hospitals. Not only did “city hospitals attract many excellent doctors to their staffs” [27], they also became national models for nurturing close collaborativeefforts betweenresearchlaboratories and clinical practice. The premier examplewasthe Thorndike Medical Laboratory establishedat Boston City Hospital in 1923.Subsequently,this relationship betweenthe hospital and researchlaboratories wasimitated by many other medical facilities throughout the United Statesand the world [28,29]. Finally, city hospitals wereoften unique because their attending physiciansand housestaffcamenot just from onemedical school,but from all the medical schoolsin a given area.Boston City, Baltimore City, and Bellevueservedasthe training groundfor housestafffrom multiple medical schools.In this way, the public hospitals provided a model for the training of housestafffrom severalmedical schools in one institution. ADVANTAGESAND OBJECTIONSTO AN AIDS MEDICALCENTER Developing an AIDS medical center-or even severalregional AIDS centers-should afford five significant practical and ethical advantagesin the battle againstAIDS. First, by assemblinga “critical mass” of basic and clinical investigators,an AIDS medical centerwould enhancebiomedical research by both stimulating novel collaborative investigations and creating close links between basic researchinto HIV and clinical carefor HIV patients. Second,asa centralizedlocation coordinatingclinical research,an AIDS medical center should promote the accrual and tracking of large numbers of HIV patients at various stagesin the diseaseprocessfor phaseI/II testing of newdrugsand phaseIII trials of combination chemotherapeuticregimens, aswell as for improved data on the natural history of HIV. Third, by training health care personnel and through explicit educationalefforts directed at risk populationsand the generalpublic, suchan institution shouldserveasan authoritative centerfor education about HIV. The center could publish quar-

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terly synopses of AIDS information for practitioners to update them on current standards of care for HIV patients; it could serve as a recognized institution where practitioners not experienced in AIDS patient care could solicit information; it could be a central clearinghouse of information on therapies, trials of experimental drugs, and other information related to HIV infection. Fourth, as a specialized center devoted to a single disease, an AIDS hospital would be able to coordinate the development and efficient provision of social as well as clinical services necessary for HIV patients. It would serve as a comprehensive model of AIDS care for other hospitals to emulate. In fact, data suggest that the outcomes of AIDS patients treated in facilities most familiar with the disease are improved [23]. Finally and most importantly, an AIDS medical center would provide much needed leadership in the battle against AIDS. The establishment of an AIDS medical center would directly communicate to the entire country that this disease is not a peripheral concern of a few, but a fundamental aspect of modern medicine important to everyone. As a center devoted to all aspects of AIDS, from basic research and patient care to the provision of social services and community education, it would be able to articulate the priorities in the AIDS battle. As an actual institution, it would enhance public acceptance of AIDS and AIDS patients, just as the advent of cancer institutes did for oncology patients. Despite these and other advantages to an AIDS center, one has yet to be established, as formidable objections must be overcome. Primary among these objections are the economics of AIDS. The costs of caring for a large number of AIDS patients have increasingly become the albatross of urban hospitals. While the inpatient costs of caring for each AIDS patient have been cut in half, from around $27,500 in 1984 to about $12,000 in 1987, the number of HIV-infected patients has increased and outpatient costs have more than doubled as effective prophylactic therapies have been distributed [30-331. Thus, the total cost of caring for each AIDS patient has declined only slightly over the course of the 1980s. Based on current estimates of inpatient and outpatient costs [8], the annual patient care budget of the proposed AIDS medical center would exceed $55 million if it treated 5,000 HIV-infected patients, 80% of whom would be in the asymptomatic phase. And beyond the costs of direct patient care, an AIDS hospital would require significant funds to sustain basic science research, to conduct clinical trials, and to fund its educational and social outreach programs. Finally, these estimates do not include the start-up costs of such an AIDS hospital.

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Furthermore, such costs are not likely to be reimbursed exclusively through health insurance or other private sources. First, many HIV-infected patients lack health insurance or must “spend-down” to be eligible for federal benefits. More importantly, even if all the HIV-infected patients treated at such an institution did have health insurance, a large proportion of such costs, especially for ambulatory visits and drug expenditures, are not usually reimbursed by third-party payors. A 1987 hospital survey showed that for AIDS inpatients, the average costs exceeded revenues by $136 per day. For outpatient care of AIDS patients, costs exceeded revenues by $174 per office visit [34]. And it seems unlikely that many HIV-infected patients, even those who remain employed, will be able to assume such large expenditures year after year for their own medical care. In response to this objection, four points should be remembered. HIV-infected patients will need health care and ultimately the funds will somehow have to be found. Undoubtedly, prudent spending based on thoughtful policy choices now will significantly curtail long-term costs. By devising better interventions, an AIDS medical center may ultimately lower costs- or at least not increase them-by ensuring more care is provided in the ambulatory setting than in a hospital and by keeping HIV-infected patients healthier and thus able to work. Furthermore, the federal government and other organizations are already funding basic science and clinical research efforts on HIV; an AIDS medical center would be eligible for these funds. Having a comprehensive AIDS care center coordinating such research and clinical trials may facilitate additional research and trials as well as reduce administrative costs of such biomedical studies. In addition, with the recent and impending closure of many hospitals, it may be possible to create suitable research and clinical facilities for an AIDS hospital without significant initial capital outlays for construction. Finally, we should keep the entire cost of HIV infection in perspective. Despite the rather large costs per patient, the total national cost of AIDS is fairly small, much less than $20 billion out of national health care expenditures that exceed $600 billion. Placed in this context, whether the United States is willing to expend tens of millions of dollars to establish an AIDS medical center is less a matter of costs than of a commitment to acknowledging the plight of HIV-infected patients and providing them the same medical care available to other Americans, A second objection focuses on the social stigma that would be created by an AIDS medical center. While patients with AIDS may be tolerated more July 1991

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than previously, significant social costs remain for individuals identified as infected with HIV, including the loss of health insuranceand the potential exclusion from housing and jobs. These tangible costscreatea significant barrier to early testing for HIV infection. The creation of an AIDS medical centermight heightenthis barrier, discouragingatrisk individuals from coming forward [7]. In response,it must be acknowledgedthat despite confidentiality laws, there still remain significant socialcoststo being HIV positive. And while it might be desirableto haveadditional and stronger enforcement of laws prohibiting discrimination in insurance,housing,and employment, there still remain enormous numbers of already known HIVpositive individuals whocould directly benefit from anAIDS medical center.So evenwithout additional testing, there already exists a demand for the services that an AIDS center can provide; additional HIV testing is not a necessaryprerequisiteto establishing an AIDS medical center.And while an AIDS medical centercannot completely removethe social stigma of HIV positivity, at least it might contribute to ameliorating the health consequences. A third objection claims that the so-called NIMBY (not in my backyard) syndrome [35] will prevent the establishmentof an AIDS hospital. Because many Americans find AIDS patients and their lifestyles objectionable if not repulsive, and becausemany Americans are afraid of contracting HIV, they will beunwilling to permit an AIDS center in their neighborhood. Ten years after the start of the AIDS epidemic, there still may be significant hostility to HIV-infected patients and an irreducible minority of Americans who are willing to oppressAIDS patients [35]. Nevertheless,more than 80%of American hospitals are already treating the thousandsof AIDS patients [34]. It alsomust be recognizedthat the increasein the number of HIV-infected people means AIDS is already in everyone’sbackyard. Clearly, an AIDS medical center would have to be locatedin a community with a relatively largenumber of HIV-infected people.Such a medical center would probably relieve the tremendous burden HIV-infected patients are already imposing on existing medical facilities, permitting these institutions to resume providing care for patients with many other diseasesthat may have receivedlower priority during the AIDS crisis [36]. A fourth objection is a practical one:Why havean AIDS medical centerif the current health caresystem can either expand to include these patients or be altered to accommodatethem? The potential generationof biomedical researchhasbeenand will continue to progressin other medical institutions. 79

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An AIDS medical centercould not possibly carefor all the HIV-infected patients of any major American city. Hence,a dedicatedAIDS medical center would not contribute in any novel way that could not be realizedby proliferation of specializedAIDS units within existing hospitals. Strong arguments can and have been made for “AIDS units.” Suchspecializedunits would be complemented,not replaced,by a comprehensiveAIDS medical center. Evidence already demonstrates that centersexperiencedwith caring for AIDS patients improve patient outcomes.And while these AIDS units may havestronglinks with other hospital divisions,they ultimately lack the capacitiesof a dedicated center to provide coordinated care that intimately links inpatient and outpatient medical careand socialservices;to serveasa national information center;and to support a “critical mass” of clinical and basic scientistsdevotedto a single diseaseentity. The successof independent comprehensive cancer centers in coordinating care and clinical and basic researchdemonstratesthat an independentAIDS medical centercancontribute in essentialwaysthat specializedunits within existing hospitals cannot. Finally, it needsto be recognizedthat AIDS highlights the weaknessof our society’sresponseto unpleasant and difficult social problems. AIDS, like other epidemics that have precededit, is a disease of society that ultimately tests our ability to respond effectively despite fears and prejudices.Initially AIDS wasa diseaseof a few cities and several marginal groups.Increasingly,it is a diseaseof this country and all of its people. What is needed,and what has been increasingly urged, is a strong, unvarnished stand from the federal government downward.National leadershipin word and deedis critical. As we enter the seconddecadeof AIDS, the advancesin our understandingand treatment of AIDS have radically changed.Physicians can offer HIVinfected patients effective, if not curative, therapies.Against the medical reasonsfor anAIDS medical center stand economic and social doubts. A recent report to the President by the National Academy of Scienceand Institute of Medicine includes the following: A further response in the nation’s efforts against AIDS is solely the province of the President-a resolve that the devastation caused by HIV infection will be prevented and its sufferers [will be] provided compassionate care and an attitude which bespeaks resolve.

Clearly a comprehensiveAIDS medical center cannot solely fill this need.However,beyond its value as a research,medical care, and information insti-

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tute, it will serve as a tangible symbol of society’s commitment to overcome these barriers and resolve what has to date been a persistent and painful problem.

ACKNOWLEDGMENT We thank Dr. David E. Rogers and Dr. Deborah Cotton for critical reviews of the manuscript.

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