There are a broad number ofissues BUfTOUnding AIDS which have not yet been adequately discussed within the medical community. Some concern the organization of research in response to health emergencies. Others address dilemmas ofproviding treatment for a disease ofunknown cause and cure within the established practices ofmedical reimbursement for experi-
mental therapies. Additional issues concern the area of AIDS which has compromised the response of some health care workers in fulfiUing their 'ProfeSsional responsibilities. The intent ofthe following article is to articulate the issues and to stimulate dialogue within the medical community. EDITOR
AIDS, Public Policy
and Biomedical Res.rch Sandra
Panem~
Ph.D.·
The current epidemic of acquired immune de6ciency syndrome (AIDS) raises numerous publie policy cooeerns for the medical community. The issues can be divided into two poups. 1bose concerns which require both immediate action and resulb are referncl to as short-term iuues. Those issues whose results will not be EortbcoJDinl for aD inde6nite time are caDed long-term issue$. Short-term issues include the accuracy reporting cases of AIDS, patient con8c1entiality, conclitions of tbird.;.party reimbursement for health care, the breech of ethical responsibility of
health care workers in caring for AIDS patients, public education and the problems ofproviding care in a disease of unImown cause and cure. Long-term is.uel focus on the organization of AIDS research-die role of federal health agencies, provisions for rebuqeting funds and medical research penonnel, and the coordination of disparate research efforts. The issues raised by AIDS are discussed within the context of the history of the epidemic in an attempt to articulate unresolved problems and to encourage debate within the meclieal community.
In the spring of 1983, Edward Brandt, Jr., Assistant
diplomatic intervention. Also complicating AIDS has been the public perception of what the scientific community can and should do. The recent technical revolution in medicine and genetic engineering's promise of solving health problems has been well publicized. The public, not surprisingly, expected rapid mobilization of the new biotechnology to solve AIDS. Yet, solutions have not been forthcoming. Together, these elements have given AIDS the aura of "a high-tech morality play." The intent of this article is to articulate public policy issues which have developed with the AIDS epidemic. What questions does AIDS raise concerning the ability of the American biomedical establishment to respond to a previously unknown crisis? The questions can be divided into issues on which immediate action and results are required (short-term) and actions whose results will only be fruitful in the future (long-term). Short-term concerns include the delivery (and payment) of social services, as well as immediate organization of monitoring and surveillance efforts. Long-term issues focus on AIDS research. How does the system
or
Secretary for Health of the Department of Health and Human Services, announced that the acquired immune deficiency syndrome-AIDS-was the nation's number one health priority. Two years earlier, AIDS had been recognized as a distinct and deadly syndrome by the Center for Disease Control (CDC) in Atlanta. Within two years, this syndrome, which had not previously existed, developed from a medical curiosity into the nations number one health concern. First seen among homosexual men in New YorkCity and San Francisco, early public discussion about AIDS focused on the homosexual subculture whose mores were taboos of main-stream America. As the disease spread beyond this community, an accompanying epidemic of fear spread even faster. The epidemic is not restricted to the United States, and its worldwide scope has caused complications which often require *From The Brookings Institution, Washington, D.C. &print requut8: Dr. lbnem, % S. Wookri, The BrooIdnga lMitutWn, 1775 MautlChtuett& ~ Wahmgton, DC 20009
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recognize a problem and then respond? How does the response to a disease whose solution lies only in basic research relate to advocacy politics which dominate American health research? AIDS raises these issues precisely because it is different from the other health emergencies which have occurred in recent years. Although Legionnaires' disease and toxic shock syndrome were sudden emergencies, they were different from AIDS in two crucial ways. When properly diagnosed, effective patient treatment and management were available for both these diseases. There is still no effective treatment for AIDS. Second, with Legionnaires' disease and toxic shock syndrome, the etiologic agents were discovered relatively quickly. Researchers then rapidly learned to understand, detect, and handle the different diseasecausing bacteria. After two years ofintensive study, no etiologic agent has been identified for AIDS. And, there is no consensus among scientists about the kind of agent one should look for. Some scientists even suggest that there may be more than one causative factor to discover, In addition, there is little consensus among scientists about where the AIDS epidemic is on the epidemiologic scale. Will the rate of new cases increase, abate, or remain constant? And for how long? Although there is little agreement about what type of agent will be found to cause AIDS, there is consensus that the ultimate solutions lie in a basic research effort which is likely to take some time. WHAT IS THE ORIGIN OF
AIDS?
AIDS is a syndrome characterized by a severe and apparently irreversible defect in immunity. Because of their immune-compromised state, patients with AIDS are exquisitely susceptible to infection. Often, infections for which treatment is effective and common in normal individuals, are fatal for them. AIDS was first recognized as a distinctive disease because a rare tumor (Kaposi! sarcoma), as well as unusual infections (eg, P carinii pneumonia and disseminated herpes simplex virus) were seen at a surprisingly high frequency among homosexual men in New York and San Francisco. Despite the fear associated with Kaposi's sarcoma, most patients do not die of their cancer but of ccopportunistic" infections. There are many unknowns about AIDS. The cause and the way to treat the disease are unknown. Even as the number of cases mount, and experience in diagnosing AIDS improves, there is still no fool-proof test for the early detection of AIDS. Yet, despite the unknowns, how AIDS is spread and who is at risk for contracting the disease has become increasingly clear; By August, 1983 over 90 percent of the 1,902 AIDS cases reported to the Public Health Service (PHS)
occurred in four high-risk groups. These were homosexual and bisexual men (approximately 75 percent of the cases), intravenous drug abusers (17 percent), persons coming from Haiti (5 percent) and hemophiliacs (0.8 percent). First described in the United States, AIDS now occurs in increasing numbers in over 21 foreign countries, such that by August, 1983, 10 percent of all known cases were outside the United States. Epidemiologic evaluation of the medical, sexual and social histories of AIDS patients has revealed transmission by intimate sexual contact or direct blood contact between a person with AIDS and the recipient. Direct blood contact can be effected by using contaminated needles or through contaminated blood or blood products. One current hypothesis is that AIDS is caused by an unknown virus which is present in blood and/or semen. The postulated virus is not thought to be highly contagious because there are few cases among casual household contacts of AIDS patients and among blood transfusion recipients. Homosexual and bisexual men, hemophiliacs and drug abusers share opportunities for direct blood contact and/or intimate sexual contact. How do persons from Haiti relate to the other high risk groups? Some Haitian folk medicine customs employ needle puncture. In addition, the injection of homeopathic doses of vitamins is common among Haitians and some individuals of Haitian origin. Often, the needles are reused without any or adequate sterilization. In addition, Haiti has been a favored vacation spot for American homosexual men for the past few years.' An additional connection between AIDS and Haiti is the observation of AIDS in Zaire and the history of recent migrations between Haiti and Zaire. These findings have led to the speculation that contact between homosexual tourists from the United States and Haitian natives has resulted in the spread of AIDS between the two groups and that folk practices have allowed further spread of the disease. Speculation further suggests that the putative virus which causes AIDS arose or was endemic in Haiti, and has spread to the U.S. by returning visitors. This speculation has created a sensitive diplomatic situation between these two countries. The Haitian government is incensed that the stigma ofthe origin ofthe virus has been placed in Haiti, favoring the alternate interpretation that the agent was brought to the island by U.S. visitors. In which direction was spread really initiated? The final answer to this question must await identification of the causative agent. Regardless of what future data reveal about the origin of the AIDS agent, there is no question that it is now present in the Haitian population and most probably has been since the late 19705. One illustration of this is found in a case report in the May 28, 1983 CHEST I 85 I 3 I MARCH, 1984
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edition of Lancet. A French geologist, without history ofhomosexuality, was diagnosed in Paris to have AIDS in April, 1983. Review of the mans history revealed that several years earlier, while working in Haiti, he had an automobile accident. As a consequence of the accident, an arm was amputated and the operation and follow-up included several large blood transfusions. Two years later, a time period consistent with the incubation period of AIDS, the Frenchman displayed the first symptoms of AIDS. To date, the succes~es with AIDS have been largely epidemiologic. The ability of the PHS to issue guidelines for possibly curtailing the spread ofAIDS derives directly from interpretation of massive surveillance and monitoring data. * Yet, non-medical events have begun to interfere with these efforts. The international tension generated between the United States and Haiti affects the coordination of researching and reporting the incidence of AIDS. While Haiti is a sovereign state, it does not have the kind of medical resources to approach AIDS which exist in the United States. Yet the Haitian situation provides an opportunity whose study may be crucial to understanding AIDS. Who should survey and monitor AIDS in Haiti? Should, and how should, samples of Haitian patient materials be distributed among American medical workers? What is the appropriate way to organize an international AIDS effort? At a recent meeting ofPanAmerican Health Organization officials; representatives from the Dominican Republic reported that there were no cases ofAIDS in their country. Haiti and the Dominican Republic share a Caribbean island and it is unlikely that there should be no spread of disease between them. Similarly, it is surprising that Canada has reported a lower number of cases than would be expected' from the extent of commerce between the U.S. and Canada, as well as the common social and cultural heritage that these countries share. These two international anecdotes have domestic counterparts. DJ: David Seneer; Commissioner ofPublic Health in New York City, has reported an apparent decrease in the rate of new cases of AIDS in that city based on the new cases reported to his office. In a recent New York TImes interview, he was quoted to say, We are not seeing in the past six months the doubling of cases thathas *These guidelines, as advertised by the Public Health Service, are: "(I) Sexual contact should be avoided with persons known or suspected of having AIDS. (2) Sexual promiscuity is a risk factor. Avoidhaving multiple sexual ers and avoid sexual contact with others who do. 3) Members of high-risk groups should refrain from donating
~
load.
(4) Physicians should order blood transfusions for patients only
when medically necessary. Health workers should use extreme care when handling hypodermic needles." In addition, the FDA has advised blood and plasma collection centers to provide information on AIDS to potenfial donors, asking those in high-risk groups to refrain &om donation.
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been predicted. Over the last several months, the rate has remained the same-a constant average of about two new cases a day. The rate of increase appears pretty much to have leveled oft" and reached a plateau.
Seneers data are in contrast to the anecdotal experiences of some physicians who see appreciable numbers of gay men in their New York practices. The discrepancies between the reports raise the possibility that AIDS cases are not being accurately or uniformly reported to public health officials. Possible reasons for differential reporting are not difficult to understand. Lower rates may well stem public fear without decreasing interest in discovering the causes and cures of this disease. One might also argue that if there are no cases in an area, public fear of contracting the disease would not be warranted and therefore would not damage a resort island's tourist trade. Tourism is important to the economy of both Haiti and the Dominican Republic. There may also be a legitimate discrepancy in how cases are identified and reported. The criteria used for diagnosis of AIDS in Atlanta may not be those used in Montreal. In any case, the fact that the patterns of reported AIDS cases deviate from what classic epidemiology predicts is very curious. Another reason for "under-reporting" is where reporting stands as a priority for the primary care physician, who is the individual responsible for initiating the report. Some physicians who see AIDS patients claim that "over-work" leads them to "under report." A far more worrisome question is, even if the reports are made, can the data be used in epidemiologic studies? Some epidemiologic questions require longitudinal studies, where AIDS patients or those at high risk are followed-up over a period of time. Risk factors, as well as base-line information about AIDS, can be learned in these studies. In order to follow-up individuals, they need to be identified. Yet, there has been resistance .among some in the gay community to be identified because of the concern that confidential information gathered for health reasons (ie, sexual preference) will be inappropriately used. The issue ofconfidentiality of reporting typifies the difficulty of researching AIDS, as well as the confusion of health and social issues. In the spring of 1983, the CDC announced the design of a new form to be used by physicians in reporting AIDS cases. The form placed the patients name in the center ofthe page. There is no convenient way to look at a report without noticing the patient identified. This incident provoked gay activist groups in New York to take a strong and vocalized position against a mode of reporting whereby individual patients could be traced through health records. Some suggested that if the AIDS &Ies in the CDC could be assessed by others, for example, the FBI or AIDS. PubIc PolIcyand BIomedIc8I Aeee8n:h (SMdnJ PMem)
CIA, then potentially a patient's homosexuality could be used against him. The CDC adamantly protested that their records were used only for health purposes, that their computers required multiple passwords for access, and that the position of activist groups was paranoid. In an ensuing debate, which threatened that no AIDS reports from New York would be reported to the CDC, the CDC adopted an intermediate position. They passed the buck and shifted the decision of confidentiality and patient identification and therefore the ability to follow-up individuals to state and local authorities. The CDC plans to accept only reports without patient identification. Their newly planned form would send a patient identifier to state and local officials, but CDC would never have that information. At minimum, a tedious bureaucratic chain of events will now be required for follow-up studies. The concerns over patient confidentiality and its effectson health reporting are not new For this reason, by September 1983, 44 states legally required that AIDS be a notifiable disease. 'Iraditions have developed specificallyto deal with individual privacy as well as public health. One is the longstanding tradition of reporting communicable diseases such as measles, rabies, and veneral diseases. Although there is little precedence to suggest abuse of confidential data, the issue is sensitive here because of the societal view on homosexuality. In the case ofAIDS, the oversensitized issue of sexual identity threatens to be so compelling that it hamstrings investigations whose outcome might well save thousands of lives. Ironically, this is one instance where the homosexual community itself may cause the establishment to inappropriately respond to their needs. SHORT-TERM ISSUES
Of immediate concern is the delivery of social and medical services to AIDS patients. It should be a primary objective that AIDS patients receive appropriate social and medical services. Yet, these issues have urgency because the peculiarities of the disease and the accompanying paranoia have made AIDS the morality play of the 198Os. Consider the issue of who will bear the cost and provide medical and social services. The Social Security Administration has ruled that AIDS is a disease whose victims can apply for disability benefits. Under normal procedures, disability benefits begin six months following successful application. There is a conflict between the time frames of the health policy and epidemic disease. The CDC estimates that 80 percent of AIDS patients now die within two years of their diagnosis, and many of the patients die sooner; within several months. The financialissues for the AIDS patient are not trivial. Physicians at the University ofCalifomia San Francisco General Hospi-
tal estimate that from diagnosis to death, the average cost of caring for an AIDS patient is $60,000 to $70,000. Some of the care which AIDS patients require could be provided within a hospice. Yet, under recent HHS reimbursement rulings, hospices can receive coverage only for patients whose physicians find their prognosis for longevity to be six months or less. This situation presses the question, can the bureaucracy respond within the time frame of the disease? Still another problem is that under Health Care Finance Agency (HCFA) rules, federal insurance pays only for established and standard treatments. Yetthere is no standard therapy for AIDS and any treatment is experimental. An example is the experimental treatment of AIDS by interferon. Although not shown to be effective, interferon is being tested in AIDS patients at the Sloan-Kettering Institute in New York, as well as in patients at San Francisco General Hospital. Even if interferon is found effective, HCFA would not pay for the treatment because interferon is an experimental drug. Do the health care reimbursement guidelines have sufficient flexibility to provide coverage for the experimental therapies which may benefit AIDS patients? The issues of medical and social services are more acute as the fear surrounding AIDS has led some health care workers to react contrary to their professional ethics. The New York Tames recently reported that several nurses in Arizona had resigned their positions because they chose not to care for AIDS patients. This is not an isolated response and it is especially difficult to understand because there are excellent procedures for limiting the spread ofhepatitis B virus-an agent whose pattern of transmission parallels AIDS. The CDC has identified only a few cases of possible hospital-acquired AIDS. In the most probable cases, the hospital worker had a history of a needle stick from a contaminated needle which could have been used to draw blood from an AIDS patient. Paranoia in the general public concerning AIDS is further compounded by the confusion of science and morality. An extreme example of this confusion is a group of Texas-based physicians known as Physicians Against AIDS who are working to criminalize homosexuality under the guise of stopping the spread of AIDS. They argue that a basic principle of epidemiology is to identify the repository of an infectious disease and then immediately move to eliminate that repository. They argue that because over 70 percent of AIDS patients are gay, homosexuality should be criminalized. The fallacyof this reasoning is blatant, but its occurrence underscores how the fear of AIDS is compounded by sexual taboos. Emphasizing the short-term issues of public education and fear, personnel other than health care workers CHEST I 85 I 3 I MARCH, 1984
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are also choosing not to treat AIDS patients. In late June, 1983, the New York state penal system was threatened with a work stoppage by the prison guards' union. The union held that their members were being subjected to extraordinary health hazards because they had to interact with prisoners who had AIDS. In making their case, they cited rumors about how AIDS was spread. The early media coverage of AIDS, which focused on the gay community and the promiscuity of some of its members, has been criticized for deflecting attention from more legitimate issues of public health policy. Yet, in attempting to correct this style of reporting, an immoderate backlash is itself often distorting. Several examples are found in a recent series of articles in The New Republic. While attempting to present the frustrations of Haitians who feel stigmatized, one article, by Robert Bazell, states "There is simply no evidence to support the so-called Haitian-connection." The origin of the AIDS agent cannot currently be determined. Nevertheless, AIDS is present in the Haitian population and Haiti is critical in understanding the epidemiology of AIDS. In a further attempt to allay public fear, the same author states,
Major health policy decisions have concerned the nation's blood supply. There is no definitive test to screen blood for the AIDS agent and there are anecdotes which suggest that the agent may be present in blood prior to the onset of clinical symptoms. Thus, allowing donations from any healthy adult is not a sufficient criterion to eliminate all possible carriers. There are sensitive issues about identifying individuals in high risk groups. A complicated procedure to screen a donors history (and therefore his possible inclusion in a high risk group) and at the same time allow retention of personal dignity and privacy regarding life-style practices has been developed. Nevertheless, these procedures may not be fool-proof: The risk has been publicized and in response some hemophiliacs as well as candidates for elective surgery have developed their own personalized blood supplies by arranging donations from family and friends. Some administrators of blood banks, fearing a decrease in blood donations and a coming crisis in blood supplies have, therefore, decided to refuse individual blood banking efforts. This decision, in the name of allaying public fear about the nation's blood supplies, is again a backlash. These comments are not intended to sustain or increase fear, but to illustrate that there is a middle ground between paranoia and circumspection. Realistically,AIDS is of concern to the entire population. Appropriate and balanced public information, while difficult to achieve, is required.
Meant to allay public hysteria, the statement is disconcerting because it is cavalier and inaccurate. The alarming increase of patients with AIDS presumably reflects the fact that the infectious agent has not yet saturated the pool of susceptible individuals. When will AIDS become endemic? No one knows where on the epidemiologic curve AIDS is, nor do they know the size of the potentially susceptible population. The March 4, 1983 edition of CDC, Morbidity and Mortality Weekly Report, states.
LoNG-TERM ISSUES
There are more than 1,700 cases now and there will be more than 3,400 six months from nmv. But it is not likely there will be 6,800 a year from n
... facton indicate thatindividuals at riskfOr transmitting AIDSmay be difBcult to identify ... [and] ... as long as the cause remains unknown, the ability to undentand the natural history of AIDSand . to undertake preventative measures is somewhat compromised.
Similarly, in a companion article, Charles Krauthammer elegantly discourses on the politics of AIDS. Yetin emphasizing the profound effect AIDS has hadin the gay community, reality is distorted. He writes, "Although AIDS is not a threat to the general public, it is killing and terrorizing a large number of' homosexuals." The fact is that although the agent which causes AIDS is not very contagious, it is still a largely unknown quantity. Conservative interpretation of the available data is that anyone-ofany sex and any age-who may come in contact with contaminated blood is at risk. Until resolved, AIDS is a general health threat. 420
The issue of public education about AIDS is as relevant to the short-term issues of public fear and delivery ofhealth services as it is to the long-term issue of AIDS research. Could the establishment have mobilized itself more quickly and efficiently? The suggestion has been that the system, being less responsive to gays than to others, moved more slowly than if AIDS had developed in a more mainstream group. Although this opinion is widespread, little substantive information to support the position has been forthcoming. Even in Robert Bazells investigative article, he notes: [concerning]
the allegation thatbecause AIDS primarily affects homosexuals and drug addicts, the federal government was lax in responding. . . it would be difBcult to make a case that the CDC could have accomplished more than it did in the initial phases of the investigation.
Ironically, it can be argued that AIDS was recognized as rapidly as it was because it occurred in the gay community. The gay community is cohesive and has its own health centers. Because there is an established, well used, and efficient system for reporting information on other sexually transmitted diseases (such as syphilis and gonorrhea), AIDS may well have been more quickly recognized as a distinct syndrome thanif
it had occurred in the more mainstream but diffuse population. Cracking the AIDS problem lies in basic research. Were funds for research and the research community adequately marshalled? And, if the response was inadequate, should this be attributed to the appearance of AIDS in the gay community and/or to the slowness by which the research establishment recognizes and reacts to a new health problem? The federal biomedical establishment has four agencies within HHS which are involved in AIDS research. These are CDC, NIH, FDA, and ADAMHA. * The CDC surveys and monitors disease in fulfilling its mission which is primarily epidemiologic. The goal of the CDC is to identify whether any known infectious agents may be the cause of AIDS and to monitor the spread of disease. The tools are to employ tests for all known types of infectious agents and to perform tedious medical detective work. The CDC effectively delineated the pattern of the spread ofAIDS, ruled out common agents as its cause, and established guidelines to limit the spread of disease. The biologic hallmark of AIDS is a disarmed immune response following infection. To understand the pathogenesis or mechanism of this disease requires first a fundamental knowledge of how the immune system works, as well as the nature of the infectious agent. Understanding immunity is a long-term basic research goal. So, legitimately, any fundamental immunologic research may classify as AIDS-related research. Knowledge of the etiologic agent falls in the province of both CDC and NIH because some virologists feel that the AIDS agent may well be a virus for which fundamental questions are unanswered. The two remaining HHS agencies which are involved in AIDS research are the FDA (because FDA regulates blood products) and ADAMHA (because of its concern fOr intravenous drug abusers). From a policy perspective, would more money targeted for AIDS result in quicker solutions and should a larger effOrt have been made sooner? AIDSspecific funds can be traced in the HHS fiscal year '82, '83 and '84 budgets to expenditures at CDC, FDA, ADAMHA and NIH. In fiscal year '82, HHS spent $5,505,000 on AIDS, $14,532,000 in fiscal year'83 and $17,661,000 in fiscal year '84. Additionally, close to 22 million dollars have been requested as a supplement to the fiscal year '84 budget and remain under consideration at this writing. If appropriated, the budget for AIDS will have grown 6.6 fold in less than two years. How are these funds being spent? In fiscal year '84, 70 percent of the funds will go to the NIH for AIDS research, which is really long-term basic work. The *CDC, Center for Disease Control; NIH, National Institutes of
Health; FDA, Foodand Drug Administration; ADAMHA, Alcohol, Drug Abuse, and Mental Health Agency.
CDC has been condemned in some circles because its research has not yet found the answers to AIDS. Other criticism has suggested severe inter-agency conflicts about which should be the lead agency in AIDS. In fact, some feel that the HUS decision to channel all public comments on AIDS through HHS in downtown Washington, D.C. reflects an attempt to put the lid on the putative turf battles. Outside the science community, the idea of turf battles may seem strange. The job of CDC is not to perform long-term basic research, a mission which belongs to the National Institutes of Health (NIH). Herein lies the policy issue in AIDS research. There is one agency, established to monitor and survey and a second, to do long-term work, mainly on chronic disease. AIDS is an emergency now Is there or should there be an established mechanism to better manage crisis-initiated research? Although the scientific establishment clings to the myth that "targeted research" cannot solve fundamental biologic questions, experience argues the opposite. For example, the application of enormous resources to the field of interferon in the late 19705 resulted in an explosion of information which transformed that field from one of near "pseudoscience" to state-of-the-art molecular biology. Yet, although the infusion of resources resulted in great progress, the use of interferon as a pharmaceutical is still not resolved. Even though progress was very rapid, the transformation of the interferon field took many years. The interferon analogy shows that although increased resources will generate information, they cannot guarantee practical solutions, particularly rapid ones. The interferon experience also exemplifies how allocating research resources is not the simple equation which public debate over AIDS suggests-that if more money had been allocated for AIDS, solutions would now be at hand and that every dollar withheld delays the solution by some finite amount. Elements in the research equation include the availability of trained personnel and adequate laboratories. These are limited resources and the decision to rebudget must balance benefits and costs. Costs include losses on ongoing projects which address other national health objectives, possible funding of poor or premature research efforts, and not initiating promising projects directed to non-AIDS work. Benefits are that the sooner one starts, the sooner a solution will be found. One of the interesting aspects about targeted funding is the nature of the massive information explosion which inevitably results. Often the information is very valuable, although not always related to the question which sparked the targeting effOrt. This frequently happens when the area targeted is one which needs extensive basic research. One example was the very expensive Special Virus Cancer Program of the 19705 CHEST I 85 I 3 I MARCH. 1884
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which was an integral part of the National Cancer Institute's "War on Cancel:" Although no direct cancer cures were derived from this program, the basic funding, which led to the development of genetic engineering and its promises of future cures, were made. Similarly, the investment in interferon sparked a new area of research-the study of lymphokineswhen interferon was found to be the prototype of this group of hormone-like substances which regulate many aspects of the immune response. It is clear that a major investment in AIDS will cause further breakthroughs in fundamental knowledge about immunology. Can research be mobilized quickly? A frequently heard criticism is that AIDS work did not start soon enough. Federal agencies and the private sector are sources of biomedical research support. Formation of citizens groups for AIDS shows that the public can mobilize more quickly than the federal bureaucracy. This has often been the case in American biomedical efforts. One example was the role of the National Foundation for the March of Dimes in the development of polio vaccine. For another example, in the development of interferon, vocal private citizens were essential in developing public consensus which in turn moved the bureaucracy to action. In a similar fashion, numerous groups have been mobilized to raise funds for AIDS research. A framework for response to health crises that is not tied to the vagaries ofthe budgeting process is needed.
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When in the spring of 1983, AIDS became a national priority, to support the effort, HHS requested a budget supplement of 12 million dollars. At the same time, Congressman Henry Waxman's subcommittee of the House Energy Committee had recommended a Health Emergencies Fund for health crisis efforts to be maintained at a constant level equivalent to 30 million fiscal year '83 dollars. HHS testified against the fund, saying it was redundant because the supplemental appropriations mechanism exists. While both the supplement and the Fund are line items in the as yet unpassed FY'83 budget, Secretary Heckler approved internal HUS rebudgeting for AIDS (without indicating which programs will have fewer funds), maintaining the administrations opposition to new appropriations for domestic spending. Throughout these attempts to increase funds for AIDS, the need to deliver services and mobilize research continues. Although each health care crisis is unique, a management framework for rational rapid funding and rebudgeting decisions is clearly needed for effective federal mobilization. This is true not only for research, but for the delivery of services as seen by the aforementioned hospice and insurance reimbursement dilemmas. A real concern is whether the ordinary bureaucratic mechanisms work in meeting health crises. The AIDS epidemic is a grim occurrence. H response to AIDS is appropriate, not only will solutions to the disease be found, but also how health emergencies should be managed will be reevaluated.