Ignoring the Epidemic How the Reagan Administration Failed on AIDS by Peter S. Arno and Karyn Feiden F Tive years after scientists at the Centers for Disease Control first identified the Acquired Immune Deficiency Syndrome, the full dimensions of the AIDS tragedy remain unknown. But one somber point is clear: Failure and indifference characterized the initial federal response to the killer disease, crippling early research and public health education efforts that might have slowed the epidemic's growth. From the beginning, two formidable barriers impeded the public health community's ability to respond appropriately to AIDS-the structural defects deeply embedded in the American health care system and the ideological blinders worn by the Reagan Administration. This article examines how Washington responded to AIDS and what its blunders reveal about the nation's health policies. Today, the lethal epidemic has earned a prominent place on the nation's health agenda. Federal AIDS spending increased dramatically from $5.5 million in 1982 to $233.7 million in 1986. Declaring it the number one health priority, President Reagan still proposed only $213.2 million for AIDS in 1987. Congress wants higher finding levels-a recent House-Senate Conference agreed upon $410.7 million for 1987. And Administration officials have termed the progress of AIDS research to date "spectacular." Perhaps so, but with 15.000 people already dead, more than 1.5 million others infected by the AIDS virus and the Centers for Disease Control (CDC) projecting that 270,000 people will be diagnosed with the disease by 1991, there is no room for complacency. Questions about the government's failure to safeguard the health of its citizens linger to haunt not only its victims and their families, but all those committed to equitable, effective health care. Slow Action From The Start Ideological, bureaucratic and fiscal constraints jammed the federal response during the first two years of the AIDS epidemic. Those were critical times. Had coherent planning replaced the blend of neglect and hysteria that surfaced, scientists might have checked exposure to the AIDS virus by the time 10-15 percent of the gay population was infected, according to epidemiologic studies in New York and San Francisco; instead, half of all gay men may now harbor the virus. If the government had quickly recognized AIDS as a major health Peter S. Arno, PhD, teaches in the Dept. of Health Care Administration at Baruch College-Mount Sinai Medical School Karyn Feiden, a freelance writer and editor, is a member of the National Writers Union. disaster and launched a well-coordinated, adequately funded plan of attack, if money had been allocated for basic research and public education immediately, if the disease's early victims had not been stigmatized homosexuals or black and Hispanic drug users - then the course of one of the most devastating epidemics of the 20th century might have been different. Contrast the federal response to AIDS with the actions taken in 1975 after swine flu was identified among army recruits at Fort Dix, New Jersey. Fearful that the outbreak could signal the return of the calamitous pandemic of 1918, $135 million was appropriated within two months to develop a national swine flu program. Although swine flu has been described as "the epidemic that never was," and questions emerged as to the vaccine's safety, funds were nevertheless allocated with dispatch. a public health campaign was implemented almost instantly and 40 million Americans were immunized within months. from Congressional committees seeking to determine the resource needs of Public Health Service (PHS) researchers. Congress eventually earmarked $5.5 million in 1982, over a Presidential veto, but by then early surveillance, epidemiologic and laboratory research efforts had already been compromised. At the 1983 House Committee on Government Operations hearings on the federal response to AIDS, witness after witness blasted the fragmented and poorly coordinated approach taken by the Department of Health and Human Services (HHS). In response to those criticisms, former Assistant Secretary of Health, Dr. Edward Brandt, Jr., told the committee that the Public Health Service had a focused "plan of attack" adequate to meet the needs of the epidemic. Committee members asked for a copy of that plan, along with related budget figures. Two months later, HHS submitted a six-page document, created specifically for the Congressional committee, that only highlighted the department's inadequacies. The document, an abbreviated fact sheet about past activities, provided no information on future research plans; no overall strategy, timetable, or evaluation procedure; and no cost projections. The Committee on Government Operations concluded: "PHS has developed neither a mechanism for generating plans that delineated specific areas of research, surveillance, treatment and public education, nor for ensuring that the full range of activities occurs." 8 Health/PAC Bulletin Congressional Controversy Over Funding Three years later, debate over funding levels remains scarred by political in-fighting and an obsession with the budget deficit. Every year, individual Public Health Service agencies, including the Centers for Disease Control, the Food and Drug Administration, and the National Institutes of Health, tell the Department of Health and Human Services what they need from Congress for AIDS research. Consistently ignoring the advice of its own experts, the Department slashes PHS requests by one-third or more before submitting them to Congress. In Ideological, bureaucratic and fiscal restraints jammed the federal response. a bluntly worded letter to former HHS Secretary Margaret Heckler last year, Congressman Henry Waxman (D-Ca.) complained that the Administration had substituted "rationalization and equivocation" for well-informed funding and personnel requests. HHS submitted figures for '86 budget hearings only after Waxman's subcommittee threatened to subpoena relevant documents. Glen Korengold Led by liberals representing substantial at-risk populations-notably Reps. Barbara Boxer (D-Ca.), Ed Roybal (DCa.), Waxman, Ted Weiss (D-NY), and Sens. Alan Cranston (D-Ca) and Lowell Weicker (R-Ct.)-Congress has taken an unusually aggressive role in the battle for funding. Congressional appropriations have consistently exceeded both HHS and PHS requests. Thus, in 1984, PHS agencies asked HHS for $59.9 million, and HHS requested $39.8 million from Congress, which then appropriated $61.5 million. In 1985 those figures climbed to $91 million, $60.6 million and $108 million, respectively. Robbing Peter to Pay Paul Celebrating the hefty increases in funds to battle AIDS is premature, however, since these dollars have been yanked from other essential areas of public health research. The Department of Health and Human Services has consistently maintained that PHS agencies, which are under its jurisdiction, Government officials fear explicit discussion of homosexual behavior and IV drug practices. should divert funds from their ongoing work to tackle AIDS rather than expand their current budgets. Ninety-three percent of all PHS funds allocated to AIDS in 1982 and 1983 came from other programs, according to the Office of Technology Assessment, stunting efforts to combat hepatitis, chlamydia, rabies, pelvic inflammatory disease, influenza, herpes, tuberculosis, chicken pox and pertussis. The Administration's 1986 supplemental appropriations request forced cuts in the Indian Health Service; cancer, heart and eye research, as well as plans to upgrade the equipment of scientific research facilities. While this response may arguably have been appropriate at the onset of a public health disaster, "robbing Peter to pay Paul" is still official Administration policy five years after AIDS came to public attention. To manage the nation's health one crisis at a time is poor public policy that pits disease victims against each other as researchers battle for limited funds. This approach raises disturbing questions about the current commitment to fight AIDS. If a more glamorous, intellectually challenging or threatening disease comes along, will the epidemic be shoved to the back burner? The bulk of federal funds now committed to AIDS supports basic biomedical research, but the cumbersome process of awarding grants remains inappropriate for combatting a public health emergency. The National Institutes of Health (NIH) approved its first research projects two years after the initial outbreak of AIDS. Ten critical months were lost as NIH struggled to develop a Request for Applications; the process dragged six months more while the agency evaluated proposals, subjecting them to lengthy peer reviews and site visits. Grants were finally approved in April 1983, but not funded until August, largely because the Administration delayed in requesting money from Congress. Legislation as Public Relations Forced by political pressures resulting from the effects of the epidemic, Congress unanimously passed the Public Health Emergency Act (PL-98-49). The 1983 Act was intended to provide a mechanism to respond more rapidly to health emergencies. The Reagan Administration, which had vetoed a similar bill two years earlier, before AIDS had been widely reported, now had little choice but to sign the PHEA into law. Under the Act, if the Secretary of Health and Human Services determined that a health emergency existed, federal money could immediately be funnelled into epidemiology, surveillance. disease control and prevention. But the legislation remains a public relations ploy, not public health policy, because the Administration never requested appropriations to fund the act and Congress never took action on its own. As a result, health crises remain susceptible to the vagaries of the budget process and the public is as vulnerable as ever. A Paltry Sum For Education Barring a vaccine, which is probably years away, the tide of the AIDS epidemic can be turned only by halting the sharing of contaminated needles and encouraging people to practice safe sex. Because public education is the key to preventing infected persons from exchanging blood or bodily fluids, HHS has acknowledged its obligation to provide "up-to-date information on AIDS to high-risk groups, to the general public and to the medical and scientific communities." Yet it has failed to develop a plan and a budget for discharging that responsibility. Between 1981 and 1983, publicly funded information filtered out piecemeal from medical journals, occasional conferences and news reports. Only 2 percent of AIDS funds from PHS were committed to public education in 1984; in 1985 that figure inched above 4 percent. Most of the allotment for public education has been targeted to physicians and other health professionals, leaving those at high risk to educate themselves. Given the influence on the Reagan Administration of the Moral Majority and its ilk, one explanation for that omission is that government officials fear that explicit discussion of homosexuality and IV drug practices would be interpreted as officially sanctioning such The AIDS epidemic highlights structural flaws in our national health policies. behavior. The critical need to practice safe sex is mentioned repeatedly, but government funding for publications that describe precisely what that means is missing. Proposals to distribute free needles to IV drug users, one potential way to combat viral transmission, have been shot down. Also missing is a commitment to dispel the wild myths and misperceptions that have created periodic waves of public fear. As a result, punitive, victim-blaming measures-such as quarantine, job dismissal and even tattooing-continue to be proposed, despite all evidence that AIDS is not spread through casual contact. Pauperizing the Patients How medical care for AIDS patients is paid for raises broad questions about the equity of financing catastrophic illness. In the current deregulatory climate, costs are increasingly Health/PAC Bulletin 9 Federal AIDS Efforts The nation's most prestigious scientific body has sharply criticized the Reagan Administration's response to the AIDS crisis, calling federal efforts "dangerously inadequate." The charge by the National Academy of Sciences in late October has heightened public debate on federal responsibility in such vital areas as the development of vaccines, therapeutic drugs, and public health education. The Academy warned of an impending "medical catastrophe"- as if one doesn't already exist and called for a $2-billion-per-year investment by the government in research and public education. The report, "Confronting AIDS," also called for greater Presidential leadership and a national commission to generate and coordinate efforts by the Feds to do battle with the lethal epidemic. shifted from Washington to state and local governments, and on to afflicted individuals and their families and friends. Very little federal money has gone directly to treat AIDS patients. Except for those cared for at the clinics of the National Institutes of Health, almost no PHS funds (exclusive of the Federal Government's portion of the Medicaid program) have been spent on treatment. Like the victims of other catastrophic illnesses, AIDS patients lose their health insurance when they become unable to work unless they can afford to pay the costly premiums themselves. Pauperized at their most vulnerable moments, they are forced to sell virtually all their assets before turning for assistance to Medicaid or charity. In the increasingly competitive health care environment, insurance premiums from Punitive, victim-blaming measures-such as quarantine, job dismissal and even tattooing-continue to be proposed. covered patients are no longer sufficient to subsidize poor populations, thus heightening their barriers to medical care even further. In no other industrialized nation except South Africa does private sector dominance of health care place the sick and dying in such a precarious state. Cruel Delays in Social Security In April 1983, the Social Security Administration (SSA) ordered that disability benefits be paid to all applicants with AIDS-related infections who were unable to work but had contributed enough in payroll taxes to qualify. Several months passed between applying for and receiving funds; many victims died before their benefit payments ever arrived. It was two years before the SSA corrected this structural flaw and declared people with AIDS eligible for presumptive disability, reducing the waiting period for receiving benefits to just a few weeks. There are, however, no national standards for determining disability that encompass all AIDS-related disabilities, including severe AIDS Related Complex (ARC). New York City Hall demonstration against proposed 1985 legislation to ban teachers and students with AIDS from public schools. WERS WE NEED NOT BIGOTRY! PEOPLE'S ANTI-WAR MOBILIZATION 10 Health/PAC Bulletin |