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Health Policy Advisory Center HEALTH HEALTH HEALTH HEALTH HEALTH HEALTH HEALTH HEALTH HEALTH HEALTH Volume 16, Number 4 PAC BULLETIN The Sickness That Won't Heal Health Care for the Nation's Homeless j - > U HEALTH El CARE - --- 1 Ell 1081 F Bill Kyneton AIDS: The Impending Quarantine Peer Review To the Editor: Some time ago Bulletin ( , Vol. 15, No. 2) you reported on problems of residents of Tipperary County, Ireland, and noted that they attributed the deterioration of their own health and that of their animals to the Ballydine pharmaceutical plant of Merck, Sharpe and Dohme, Merck & Co.'s Irish subsidiary. The article men- tioned that one farmer, John Hanrahan, was suing. The judge has reached a verdict. During the trial the Hanrahan family gave evidence of nine years of continual health problems, including nausea, respiratory problems, and running eyes and noses. Mrs. Hanrahan testified that she had suffered numerous uterine hemorrhages over the years since 1976, when she first entered a hospital some weeks after an explosion at the factory. Expert witnesses gave evidence that ab- normalities found in blood tests of the Hanrahan family were consistent with solvent poisoning, that John Hanrahan's respiratory problems were consistent with exposure to toxic pollution, that topographical and meteorological condi- tions in the area explained why the Hanrahan farm suffered the brunt of the pollution from the Merck plant, and that the cattle deaths and deformities could have been caused by toxic chemicals. In his decision the judge noted that the factory had an odor problem and the evidence of botanical effects of pollution in the area was irrefutable, however he ruled that Mr. Hanrahan had failed to prove the factory was responsible for the various problems. The cattle deaths, he declared, may have been due to other factors. He cited evidence that hoose, a cattle disease, was present on the farm from 1978 to 1983, and suggested that Mr. Hanrahan had permitted an obses- sion with the factory to distract him from proper management of his farm. The Hanrahan case has raised many questions regarding the suitability of the Irish courts as a means of resolving pollution controversies. The up to $ 1 million the Hanrahans will have to raise to pay legal and other fees - he has put the family farm up for sale - - is petty cash to Merck, which says it grosses that much from the Ballydine plant alone Health / PAC Bulletin July August - 1985 Board of Editors Tony Bale Howard Berliner Carl Blumenthal Robert Brand Robb Burlage Robert Cohen Michael E. Clark Tina Dobsevage Peg Gallagher Sally Guttmacher Dana Hughes David Kotelchuck Ronda Kotelchuck Arthur Levin Steven Meister Cheryl Merzel Patricia Moccia Regina Neal Virginia Reath Hila Richardson Herbert Semmel Hal Strelnick Louanne Kennedy On Leave: Pamela Brier, David Rosner Editor: Jon Steinberg Staff: Roxanne Cruiz, Debra De Palma, David Steinhardt, Loretta Wavra Associates: Des Callan, Mardge Cohen, Barry Ensminger, Kathleen Gavin, Marsha Hurst, Mark Kleiman, Sylvia Law, Alan Levine, Judy Lipschutz, Joanne Lukomnik, Kate Pfordresher, Susan Reverby, Alex Rosen, Judy Sackoff, Diane St. Clair. Gel Stevenson, Ann Umemoto, Rick Zall. MANUSCRIPTS, COMMENTS, LETTERS TO THE EDITOR, AND SUBSCRIPTION ORDERS should be addressed to Health / PAC, 17 Murray St., New York, N.Y. 10007. Subscription rates are $ 17.50 for individuals. $ 35 for institutions. ISSN 0017-9051 1985 Health / PAC. The Health / PAC Bulletin is published bimonthly. Second class postage paid at New York, N.Y. Postmaster: Send address changes to Health / PAC Bulletin, 17 Murray St., New York, NY 10007. The Health / PAC Bulletin is distributed to bookstores by Carrier Pigeon, 75 Kneeland St., Room 309, Boston, MA 02111. Design: Three to Make Ready Graphics / 1985 Cover by Bill Plympton Typeset by Kells Typography, Inc. Articles in the Bulletin are indexed in the Health Planning and Administration data base of the National Library of Medicine and the Alternative Press Index. Microforms of the Bulletin are available from University Microfilms International, 300 Zeeb Rd., Dept. T.R., Ann Arbor, MI 48106. every week. Another question relates to conflicting medical evidence. Dr. Muiris Fitzgerald of University College, Dublin, testified that John Hanrahan suf- fered from minor lung abnormalities consistent with exposure to environmen- tal pollutants; a Merck medical witness who had examined Hanrahan said he had found no such abnormality. The Hanrahan task, providing evidence of a definite causal relationship between environmental pollution and various health effects sufficient to satisfy a legal definition of proof, is extremely difficult, as well as extremely costly. In this case the difficulty was heightened by Merck's unwillingness to provide infor- mation on its chemical processes and emissions. Although early in the case Merck claimed that Hanrahan and others had engaged in a press campaign against the company, coverage in the Irish news- papers was actually meager. Most of the expert evidence went unreported, as did contradictory statements made by of- ficials of the Dept. of Agriculture team investigating the Ballydine problems. The failure of the media to report details of the case prevented the public from learning a good deal of other dis- quieting information. Environmentalists who have argued that U.S. chemical and drug firms have been drawn to Ireland by its lack of environmental and health regulation feel their analysis is con- firmed by Merck's testimony regarding the operation of its Ballydine incinerator. To begin with, the machine itself was faulty: the flow meter was too large, the temperature tracing did not work, and the mixing of wastes intended for in- cineration was unsatisfactory. Even more disturbing was Merck's admission that it had not realized until 1984 that the in- continued on page 14 2 Health / PAC Bulletin Notes & Comment by Herb Semmel Congress enacted Medicare and Medicaid two decades ago in 1965. What is most remarkable about this date is that it was so late. Long before 1965 all the nations of both Western and Eastern Europe as well as many poorer countries had estab- lished more comprehensive and universal government pro- grams for health care. However late their passage, Medicare and Medicaid represented a fundamental shift in public attitudes. These pro- grams made access to basic health services an " entitlement " for the elderly and many of the poor, although millions re- mained uncovered by either private insurance or public programs. Two decades ago the need for government health programs was obvious. By the 1960's, private health insurance had become part of the wage structure expected by employees and accepted by many employers. But for tens of millions who were not actively employed by reason of age, disability, unemploy- ment, or responsibilities of raising children, health insurance was unavailable or prohibitively expensive; without insurance, most had to forego health care or exhaust a lifetime of savings. The elderly, predominantly retired workers and their spouses, had come to take health insurance for granted dur- ing their working lives. Suddenly on retirement they found themselves without protection in their " golden " years. With strong support from organized labor, they developed a broad movement for health insurance for the aged; the time was also ripe. Following the assassination of President Kennedy and the landslide election of President Johnson in 1964, the political climate was favorable for social welfare programs. Medicare, a key component of Johnson's " Great Society, " went through Congress a year later. With little attention, the very same legislation also estab- lished Medicaid. Not part of President Johnson's program, Medicaid was the creation of Chairman Wilbur Mills of the House Ways and Means Committee, who sold it as an exten- sion of an existing program of block grants to the states ear- marked for health care for the poor. However, as we shall see, Medicaid represented a marked departure from the block grant system, which allowed the states great freedom in deciding what services to provide and to whom. Medicaid did for some of the poor what Medicare did for the elderly, created an en- titlement to basic health care. hearing aids, and other vital services and supplies. As a result, it now covers only 42 percent of health care costs for the el- derly; they lay out roughly the same 20 percent of their income for health care as they did before Medicare was enacted. But the elderly are also receiving much more health services as a result of Medicare. The program's principal achievement is the provision of hospital care to the elderly and to persons who receive Social Security disability benefits. Subject to a small deductible, Medicare pays the entire cost of a hospital stay for a " spell of illness " lasting up to 60 days. This fully pro- tects 98 percent of Medicare hospital patients. Those eligible for Medicare make up only about 12 percent of the total popula- tion, but account for 40 percent of all hospital income. Medicare has also increased access to physicians. It pays 55 percent of all doctor bills of the elderly. For the majority of them who now use physicians that accept Medicare assign- ment, it covers almost 80 percent of the bill. Medicaid too has positive and negative aspects. Like Medicare, it has failed even to approach what the Department of Health, Education and Welfare described as its ultimate goal: " the assurance of complete continuous family centered - medical care of high quality to persons who are unable to pay for it themselves. " Over half the country's poor do not qualify for Medicaid, largely because eligibility levels of the various states average only 38 percent of the poverty level. Twenty- five states still do not cover children living in two parent - families. Twenty states do not cover the medically needy-- poor families with gross incomes slightly above the welfare eligibility level whose medical expenses push their net income below that level. Thirty - five million Americans still have no insurance protection under either private or public programs; an additional 30 to 50 million are grossly underinsured. For many of those covered by Medicaid, its low reimbursement payment to physicians has meant continued consignment to the The Patient's Perspective Contents Looking back, both Medicare and Medicaid turned out to be the proverbial glass, half full or half empty depending on one's viewpoint. Medicare did not fulfill President Johnson's promise in signing the bill: " no longer will illness crush and Vital Signs 69 destroy the savings that [older Americans] have so carefully put away over a lifetime so that they might enjoy dignity in their AIDS: The Impending Quarantine later years. " One out of every four older Americans will spend Small Opportunities, Deep Pitfalls: some of his or her life in a nursing home, and most of them Occupational Health will lose their life's savings as a result. Medicare provides no in Local Health Departments 15 coverage for long term care, drugs, dental care, eyeglasses, The Sickness That Won't Heal: Herbert Semmel is Litigation Director with New York Lawyers Health Care for the Nation's Homeless 22203 for the Public Interest, Co Director - of the Center for Law and Know News: AIDS and Health Education 22293 Health of Cardozo Law School, and a member of the Health / PAC Board. Body English: Anesthesia, Part II 31 223 Health / PAC Bulletin 3 bottom level of a track dual - medical care system, often rejected by the best trained (high priced) specialists. This same pro- cess severely limits the number of Medicaid patients admit- ted to prestige hospitals in which these physicians practice. Rather, many are consigned to Medicaid mills or clinics and to the chronically underfunded public hospitals. Despite these deficiencies, for the welfare families auto- matically eligible and other poor people who are covered, Medicaid ensures access to a hospital and physician, without charge; in the District of Columbia and states such as New York that offer broader coverage, Medicaid provides for the full range of health services, including prescription drugs and dentistry. It currently pays half of the national nursing home bill. Medicaid patients now receive the same amount of basic health care services as the general population, a marked change from the pre 1965 - era. In addition, Medicaid reim- bursements are the financial lifeline of many public and volun- tary hospitals which care for large numbers of poor people. including many without any coverage. In short, Medicare and Medicaid have not met their promise, but they have dramatically improved the lives and health of millions of Americans. Health Care As An Entitlement Until 1965, access to health care was considered a private matter in the United States. Except where collective bargain- ing gave employees some say in the matter, the decision to in- sure was largely in the hands of employers. In general, the larger companies provided reasonable coverage, with benefits expanding over time to include outpatient as well as inpatient services, and in some cases other services such as dentistry, eyeglasses, and psychotherapy. However tens of millions of workers, usually those in smaller, non union - jobs, had no coverage and often could not afford to buy individual policies for themselves and their families. It is often forgotten that just two decades ago no one had a right to government social welfare programs in the eyes of the law. In 1965 a federal judge ruled that an applicant for welfare could not sue for benefits even though it appeared that these benefits had been denied in violation of the welfare depart- ment's own rules. Welfare, the judge said, was simply a govern- mental form of charity, and one could not sue a charity for refusing to offer its bounty. In many areas, payments for physi- cians or hospital bills doled out under general assistance pro- grams by local officials were regularly limited to the " worthy " poor, whose election to this category often reflected political support, racial bias, and moral judgements against children born out of wedlock. Legally, therefore, Medicare and Medicaid constituted a remarkable breakthrough in the concept of publicly supported health care programs. They were no longer a charity, but an entitlement. The statutes and regulations spelled out in detail both the conditions for eligibility and the services covered. Medicare expressly provided an appeal process by which pa- tients could challenge denial of benefits; this included access to the courts in cases involving substantial sums. The Medicaid law was less specific, but a series of decisions by the U.S. Supreme Court beginning in 1968 affirmed that beneficiaries of welfare programs, including Medicaid patients, had similar rights. For the first time, the poor were able to challenge the welfare bureaucracy in court, a theoretical right which took on real meaning with the development of the federally financed Legal Services program. The right to sue was important not only to the successful litigant but because these lawsuits put pressure on welfare officials in general to comply with the laws and regulations. Financial incentives to comply were added in 1976, when Congress passed legislation enabling litigants who successfully asserted their rights under federal law to col- lect fees for their attorneys, even for Legal Service attorneys who do not charge their clients. An arbitrary denial of Medicaid benefits could henceforth cost a state thousands of dollars in legal fees. The recognition of Medicare and Medicaid as an entitlement led to judicial recognition that they are a " property " right which cannot be denied or terminated without a full hearing in which the Medicaid patients or their representative presents evidence, cross examines - witnesses, and receives a written explanation of the reasons for the final decision. Under regulations established for the Medicaid program, once a person is declared eligible, benefits cannot be terminated without a hear- ing. This ended the common practice of dropping patients from the rolls without giving them a full opportunity to establish their eligibility. The notion of health benefits as an entitlement has also had an impact on private insurance. Theoretically, anyone dissatisfied with the resolution of his or her health insurance claim could sue for breach of contract, but except for the rare claims of tens of thousands of dollars, the legal fees would ex- ceed the claim and most holders of private health insurance are not eligible for free legal services. Recently, however, some state courts have awarded large sums in punitive damages, in effect a penalty, against insurors who arbitrarily denied a valid claim; in one California case the damage award was $ 5 million. Despite these advances, entitlements are only as strong as their foundation, the laws passed by Congress or the state legislatures. What the legislature grants it can also deny. The 1981 Reagan budget terminated both welfare and Medicaid eligibility for 400,000 people, and some states have further restricted eligibility or covered services. In no sense are en- titlements the kind of " fundamental rights " given special con- stitutional status. Historically, U.S. courts have rarely required affirmative action (provision of benefits) by the government as a matter of constitutional law. Rather, fundamental rights such as voting or free speech are simply protected against government interference. The government may not prevent the expression of opinions in a newspaper, but it has no obliga- tion under the Constitution to provide funds to ensure that all opinions will find their way into the press. The Congressional prohibition on funding abortions with federal Medicaid dollars provided a classic confrontation be- tween fundamental rights and a limited entitlement. In a series of cases, the Supreme Court has found that the Constitution prohibits the government from interfering with a woman's fundamental right to a free choice to carry to term or abort. But the Supreme Court has also held, by a 5-4 vote, that Con- gress could deny Medicaid funding for abortions even though it covered all other health care connected with pregnancy. Medicaid, the majority said, was only a statutorily created en- titlement which Congress could limit; poor women could be deprived of their right to choose because of lack of money. These judicial decisions accurately reflect a society which conditions even the basic necessities of life on the possession of property and income. In the wealthiest society in the world, there exist no fundamental rights to food for the hungry, hous- ing for the homeless, or care for the sick. The tens of thousands of homeless, the undernourished children in the millions, and the tens of millions who are deprived of decent quality health care are a testament to the failure of the political process to 4 Health / PAC Bulletin meet even the minimum conditions of life for many people of this country. centive for expanding the length of time patients stayed in the hospital. Medicare and Medicaid and the Reshaping of the Health Care System In 1965. U.S. health care could be characterized as a system controlled by individual doctors in private practice who ad- mitted patients to (public or voluntary) hospitals that were single institutions rooted in the community they served and controlled by the medical staff. With rare exceptions such as the Kaiser Permanente - program in California, providers were paid on a fee for service basis. Patients who had adequate in- surance or private means could choose whatever provider they wished and decide what services they would consume. Aside from running public hospitals and clinics, which by 1965 were increasingly institutions for the poor and minorities, the role of government in health care delivery was largely limited to licensing. Medicare and Medicaid initially made no change in this system. Indeed, the law specifically protected fee for service payments and reasonable cost reimbursement. The result was that the programs fed tens of billions of dollars into a system ripe for inflationary pressure with almost no controls. The countervailing swing in the past five years, as the federal and state governments health care focus turned exclusively to cost containment, has brought about startling changes. The 1965 model is likely to be gone by the 1990's. Physi- cians are rapidly losing their status as individual practitioners; in 1983, more than half received some compensation as employees. Hospitals are joining voluntary or proprietary organizations; in 1984, 37 percent of them were owned or operated by a chain. Proprietary chains are buying up public hospitals and teaching hospitals, and are now developing their own clinics, nursing facilities, HMO's, and insurance com- panies. Management, not the medical staff, now runs the hospitals; it is responsible to distant corporate headquarters rather than local bodies and citizens. Fee for service payment is quickly being replaced by diagnostically related groups (DRG's), flat rate payments based on the type of case in hospitals, or by per capita payments in HMO's. DRG's for physician payment is on the drawing board. Patient freedom of choice is increasingly restricted by HMO's and PPO's, and economically motivated utilization review is denying patients a voice in what level of care is appropriate for them. Not only are patients getting less, they are often paying more. The private insurance system is shifting costs onto them that it has been covering until now. For better or worse, Medicare and Medicaid have had a major impact on the speed of these changes. This is not to sug- gest that more or less the same changes would not have come about eventually; Medicare and Medicaid merely accelerated and aggravated major structural defects in the health care system. Inevitably their massive size (100 $ billion in 1984) and the concentration of regulation in one agency of the federal government has made them principal instruments of these changes. In their early years, the Medicare and Medicaid programs follow the system of hospital reimbursement that had been in- stituted by Blue Cross, which was founded by the American Hospital Association in the 1930's to strengthen the finances of its members. Under this system, hospitals were paid on a reasonable cost basis, defined as anything the hospital's medical staff determined to be medically necessary. Reim- bursement was on a per diem basis, which created a strong in- J TTY a b "% AN ,,flZ ,,fl Z A40 A40 ,,flZ A40 ,,flZ - Bt Plympton Bill THE UPS AND DOWNS OF NATIONAL HEALTH INSURANCE The result was a system which underwrote virtually any ex- penditure for in patient - care. This spurred a rapid expansion in the number of hospital beds and the use of expensive technology and pushed hospital expenditures higher at a pace fifty percent or more above the general rate of inflation. Health care expenditures are now 10.5 percent of the GNP, nearly double the proportion in 1965. Medicare and Medicaid fed this inflationary system by assuring hospitals that most of their patients would now be covered by Blue Cross'reasonable cost reimbursement method. High utilization by the elderly earns hospitals 40 percent of their revenues through Medicare; with Medicaid, the federal government proportion rises above 50 percent. Increasingly, this same payor is calling the tune for continued on page 28 Health / PAC Bulletin 510 Vital Signs Cutting Below the Belt When the DRG system of prospective reimbursement for Medicare patients was introduced, the promise was that it would reduce costs by compelling hos- pitals to treat patients efficiently and then send them home. The potential for abuse by hospitals eager to maximize revenues at the expense of needed care was read- ily apparent, but so far the Reagan Ad- ministration's Health Care Financing Administration doesn't believe any has occurred. HCFA has acknowledged receiving " allegations of individual instances of hospitals discharging patients who re- quire a more intense level of care in the initial portion of their home care treat- ment, " but adds, " We find no indication in any data available to us of an identifi- able trend in increased costs per visit related to... the prospective payment system. " Such a trend is unlikely to appear, because HCFA is taking vigorous meas- ures to make sure that it doesn't. As more elderly people are bundled out of the hospital quicker, sicker, and in need of more care, HCFA denials of reimburse- ment for this care have soared. " It's frightening to see case after case of denied claims for elderly patients sent home from the hospital with serious medical problems, " commented Rep. Ed- ward Roybal (CA D -), Chairperson of the House Select Committee on Aging, at a hearing he held in July. Aside from these case by case denials, HCFA has introduced a DRG style - system for home visits to cut government reimbursement expenditures. Before last July 1 home health care agencies were able to lump all cases together, in effect cost shifting - high expenses of a patient requiring intensive services such as physical therapy or intravenous chemo- therapy were covered by higher than cost payments for other patients. Now HCFA limits reimbursements according to a prescribed amount for each home care discipline, and the reimbursement will be tightened every year. As a result, Other goods and services 4 agencies will refuse to take patients re- Research, construction, and quiring care with insufficient reimburse- administration 12 ment just as hospitals do with increasing frequency- and HCFA will see no " iden- tifiable trend in increased costs per visit. " A Right, Not a Service HCFA also plans to squeeze nursing homes by ending their waiver of liabil- ity up - until now if they cared for a We have our differences with Cardinal John J. O'Connor, but this is all the more patient who was then found to be ineligi- reason to applaud his Labor Day State- ble, they could get reimbursement for the patient's care up to that point. Under the new system, if a nursing home takes a case and then discovers there is no reim- ment on " The Right to Health Care. " Readers might suspect Health / PAC ghostwrote it. We didn't. Cardinal O'Connor simply looked at some of the bursement, it must absorb the full costs. same facts we did and came up with a lot Henceforth if homes have any suspicion of the same conclusions. The following that someone might not be approved, are excerpts from Cardinal O'Connor's they will probably reject that patient. The increase in Medicare denials is already shifting the line of doubt further message, issued in his capacity as Chair- man, Committee on Social Development and World Peace, United States Catholic to the conservative side by creating " a climate of uncertainty, " in the words of Steven Yovanovich of the American Fed- Conference: The fact that at least 35 million Americans can not afford adequate eration of Home Health Agencies. The DRG reimbursement system was introduced not just with a promise that it would save Medicare money, but that health care should be a deep concern to the Church and to our whole soci- ety...This. year is the 20th anniversary of the enactment of the Medicare and patients could obtain appropriate care Medicaid programs which were major outside the hospital. Instead, as Rep. steps toward fulfillment of the goal of Roybal noted, " First we send [the el- universal coverage. Decades of steady derly] home earlier and sicker from our hospitals because of DRG's, then we turn around and cut back on their essential home care. " progress are now being eroded as discus- sion of health care issues focuses almost exclusively on cost containment... Earlier gains in rates of health in- surance coverage are being eroded as Funding Fundamentals It's not just how big the pie is, but how you slice it, as the Health Care Financ- unemployment and labor force realign- ments leave a larger proportion of work- ing people and their families with minimal or no protection...Half. of those with incomes below the federal ing Administration's figures for 1984 poverty standard have no insurance and health care expenditures show. Here is are ineligible for Medicaid... a brief rundown on where last year's The poor and uninsured in our coun- $ 387 billion came from and went: try have often depended on care from Sources Percent publicly funded health services: public Private health insurance 31 hospitals, communtiy health centers, Direct patient payments 24 maternal and child health projects. Un- Medicare 17 fortunately, at a time when the number Federal Medicaid 5 of poor and uninsured has been rising, State Medicaid 5 care from those sources has diminished Other federal Other state and local 7 as many public facilities have closed or 8 cut back on hours or services. While Philanthropy Destinations Hospital care Physician services 3 Percent 41 19 some individual hospitals have increased aid to the poor, on the whole the private sector has not filled the gap. In fact, the combined effect of cost containment ef- Nursing home care 8 forts and increased competition has ac- Drugs Dental services Eyeglasses 7 tually reduced care for the poor among 62 6 private hospitals. In some states there ap- 2 pears to be a clear relationship between 6 Health / PAC Bulletin the growth of investor - owned health facilities and reduced access to care for the poor and uninsured. Even government insurance programs do not fully protect access to care for those of the poor and the elderly who are covered. The number of physicians who refuse to accept new Medicaid patients is rising, leaving poor sick people with Medicaid cards that are worthless until they become sick enough that they can not be turned away from hospital emer- gency rooms. Elderly Medicare patients increasingly find that hospitals are eager to discharge them, regardless of their ability to manage alone at home or the availability of nursing home or home care services. Health care delivery systems are changing, too. The tremendous growth in investor - owned facilities for non- hospital emergency and surgical care is troubling. As such systems become the norm and begin to dominate the market for certain kinds of services, those who can not pay and have no insurance will find fewer and fewer sources of medical care. Lack of health insurance does not mean just running up unpaid medical bills. All too often, the uninsured go without care. They are regularly turned away from essential services that could prevent serious illness or disabling con- ditions that could ease shattering pain, improve functioning, and lengthen life. Numerous studies show that the unin- sured have significantly fewer doctors ' visits, days in the hospital and prescrip- tions filled, although their health status is considerably worse. The results are disastrous.... infant mortality, life ex- pectancy and disability rates confirm that the poor and uninsured permanently suf- fer the consequences of our inadequate system of providing health care. Health Care as a Human Right In their 1981 Pastoral Letter on Health Care, the American Catholic Bishops strongly reminded us that health care is neither a commodity to be left to the free market nor an optional community ser- vice. Every person has a basic right to adequate health care which flows from the sanctity of life and the dignity of human persons. The bishops called on the federal government to be the guaran- tor of a basic level of health services for all, with special attention to the health needs of the poor, whose interests are usually most threatened. It is important to reflect on these prin- ciples and their application when access to care for the poor has so sharply de- clined and the competitive, for profit - ethic has become increasingly dominant. What has traditionally been called the health care " system " is now described as the health care " industry. " What Can Be Done Obviously, our efforts have to start somewhere. Perhaps first on the agenda for ensuring access to adequate health care should be the unborn and their mothers, who are especially vulnerable and increasingly without insurance. A recent report based on the 1984 Current Population Report by the U.S. Census Bureau indicates that more than 25 per- cent of all women aged 18 to 24, who ac- count for 40 percent of all births each year in this country, are uninsured and therefore unlikely to receive adequate medical care.... We also need to ensure that all poor children are covered by public or private health programs. Many people have been shocked to learn that our record in child health has been declining in recent years. Child health screenings and immuniza- tions are down, and many children reach school age with serious handicaps because of earlier lack of medical attention.... In 1981 the Catholic Bishops called for some system of national health insurance as the best means of providing a just and effective system of medical care. That goal seems farther away now than at any time in the past decade. However there are many intermediate steps that can be taken on the national, state and local levels to improve the system we have and to curtail its deterioration.. But.. im- proving policies that directly affect the poor will not be sufficient; policies that indirectly affect the poor are equally im- portant..... The rules under which states license medical facilities, treatment of investor - owned institutions under the tax laws and Medicare reimbursement plans, and sales of non profit - facilities to for profit - chains may have even more profound and lasting effects on the poor than this year's debate over Medicaid cuts. HEALTH 13 Y'Y' CARE VJ 1 = El 151 F 1F - Bill Kympto Health / PAC Bulletin 7 a a The Health / PAC Bulletin isn't Playboy or Time You might have noticed this. One of the consequences is that you can't buy it at most local newsstands. This could mean that if you don't have a subscription you may miss that key article on medicare or the pharmaceutical industry or nursing homes you really wanted to read. WHY? Because when the Bulletin covers a subject you get a perspective on it available nowhere else. WHY? Because in health and medicine publishing virtually every magazine depends on glossy industry advertising and / or the medical establishment for financing. If you read a dozen health care publications, you know what we're talking about. If you only have time for one, check out the competition. If you agree we offer unique, incisive, well written - , and informative health care coverage, why not fill out the form below. Or, if you're already a subscriber, why not take this opportunity to enlighten a friend. Health care is this country's biggest business. Make it your business too. Please enter subscription (s) for the Health / PAC Bulletin Check: (Individuals $ 22.50 Y' 2 years $ 42 Y' Institutions $ 45 Y' 2 years $ 70 (Foreign subscribers add $ 8 per year) Name Address City State Zip Y' Bill me (plus postage and handling). Charge: \ [2 - Visa Y' Master Expiration date No. Signature Send your check or money order to Health / PAC Bulletin. 17 Murray St., New York, N.Y. 10007 23 Se 8 Health / PAC Bulletin AIDS: The Impending Quarantine by Robert L. Cohen Concerns about confidentiality will threaten to jeopardize research and public health control efforts unless they are ade- quately and credibly addressed. ' J. Curran, et al., CDC, Atlanta Between 1,000,000 and 2,000,000 people in the U.S. have been exposed to the virus which seems to cause AIDS. As of October 1985 15,000 cases had been reported and 30,000 new ones were expected within a year. The need for policies and programs which provide adequate resources for research on the treatment and prevention of AIDS, mass public education about this disease, and guaranteed medical care for those af- flicted is obvious, critical, and unmet. Since AIDS is a disease of plague - like proportions, it is a public issue; public policies are required to control its spread and to provide for those who contract it. Unfortunately, but not unexpectedly, public policies being recommended and im- plemented will, if unchecked, rapidly erode the civil rights and basic liberties of individuals exposed to AIDS. Recom- mendations for mass screening for antibody against LAV / HTLV - III are voiced with growing frequency, and in some cases they are being implemented. Policies are being promoted which will restrict the rights of individuals to education, employment, housing, and in- surance, based upon their antibody status. Proposals to place special restrictions on women's reproductive rights are par- ticularly disquieting. Increasingly, public discourse about AIDS touches on the notion of quarantine. Few public figures are actually recom- mending one, but the potential for public support is great, and the pieces are falling into place. Programs which restrict the civil rights of people with AIDS are an incremental approach to the establishment of a quarantine. If a quarantine were ac- tually implemented in this country, it would probably be called something else. Whatever form it takes, this develop- ing public health policy is best viewed as a quarantine equiv- alent and judged accordingly. Fear of AIDS is universal. In the U.S. we are not used to large epidemics of infectious diseases with high mortality among men aged 20 to 40. We should not get used to it. Un- fortunately, the easy, immediate solution appears to be a quarantine equivalent, and many people might endorse it. However not only would this course involve a serious invasion of civil rights, it would not work. A review of current know- ledge about the biology and epidemiology of AIDS and the LAV HTLV -/ I II virus will show why. Robert L. Cohen is a physician and a member of the Health / PAC Board. Official Pessimism Breeds Official Hysteria It has now become the position of the Centers for Disease Control (CDC) that there will be neither treatment for AIDS nor a vaccine for its prevention in the foreseeable future. Given this official pessimism, the conspicuous absence of mass educational efforts by the federal government to teach how AIDS is spread and why casual contact with individuals suf- fering from AIDS is not dangerous is doubly disturbing. The result is heightened public hysteria, a climate fostering the im- position of an incremental series of restrictions on civil rights which could easily develop into a quarantine equivalent. Since so little is actually known about treating and prevent- ing AIDS, important decisions are being made and far reach- - ing policies promulgated without sufficient information. Un- fortunately, the gaps in scientific knowledge are often filled by prejudice. When sexually transmitted diseases are in- volved, public health policies tend to be determined by our society's dominant homophobic and erotophobic cultural biases rather than by the available scientific information. The initial U.S. concentration of AIDS largely among gay men and drug addicts in urban settings inevitably reinforced this tendency since it jibed with right wing fantasies: the Almighty wreaking vengeance upon the wicked sex and drug crazed fiends; or, for those with more of a science fiction bent, the long awaited genetically engineered biotechnical final solution to " deviancy. " More importantly, in a society where selfishness is increas- ingly considered a virtue, the public health response to AIDS has focused on prevention of its spread from " them " to " us. " Ex Secretary - of Health and Human Services Margaret Heck- ler's plea to AIDS researchers was to keep the disease con- tained within the " epidemiologic " risk groups. It is time for us to recognize that the AIDS genie cannot be forced back into its lamp. AIDS is a disease that affects human beings, not high risk groups. Potentially anyone exposed through sexual intercourse can become infected. The initial and rapid spread of AIDS through the addict and gay male. communities is simply an artifact of frequent needle sharing and multiple sexual partners. If addicts used sterile needles and syringes they would not be a risk group. Receptive anal sex may be a risk factor, but it is the presence of an infectious agent, not anal sex itself which is the main issue. If hetero- sexuals have significantly fewer sexual partners than gay men, the spread of AIDS among them may occur more slowly, but there is every reason to expect that it will occur as this new disease establishes itself within a world - wide non immune - human host. What Causes AIDS? When AIDS was first reported, various hypotheses about Health / PAC Bulletin HOLLYWOOD HOLLYWOOD FILMS SS ME my DURING THE AIDS ERA SS Bith Plympton on its cause were entertained. An infectious agent was always the most likely suspect. From an epidemiologic vantage, AIDS looked like other viral infectious diseases. Hepatitis B, also very common among gay men and drug addicts, appeared to have a similar mode of transmission. Another theory suggested that drugs used by gay men, particularly amyl nitrate, or " pop- pers, " injured the immune system and created an immune deficiency. The " promiscuous " character of the gay men who were first diagnosed as having AIDS was the basis of another theory. Several reported they had many hundreds of different sexual partners a year; each of the hundreds of different sperm they were exposed to might stimulate an immune response. Since other viruses common in the gay male and drug addict popula- tions, particularly cytomegalovirus (CMV), Epstein Barr (EB), and Hepatitis B, also stimulate the immune system to make antibodies, these men could be victims of stimulus overload. This might cause severe damage to the immune system, making it susceptible to the unusual opportunistic in- fections characteristic of AIDS. The first published report of the virus now thought to be the cause of AIDS came from Barre Sinoussi - , et al., of France in 1983. * They called it Lymphadenopathy Associated Virus (LAV). In 1984, Dr. Robert Gallo of the National Cancer In- stitute reported finding the AIDS virus, which he labelled HTLV- III. Dr. Gallo's prior research involved the viral causes of certain cancers, in the course of which he had identified a virus causing a human cancer and named it HTLV - I. Although LAV and HTLV - III seem to be identical and LAV was described 18 months earlier, Margaret Heckler, then Secretary of HHS, credited Gallo with the " discovery " of the AIDS virus. The thesis that this virus is the causative agent of AIDS rests on several pieces of evidence. First, LAV HTLV- /I II appears to be a new agent, not previously seen in the United States or Europe. Second, it specifically infects certain kinds of T Cells - and damages them, creating the T Cell - defect characteristic of patients with AIDS. Third, the virus is found in most pa- tients with AIDS and has been found in asymptomatic in- dividuals who have donated blood to individuals who later developed AIDS. The official position of the Centers for Disease Control and the National Institutes of Health is that LAV HTLV- /I II causes AIDS, and it does appear probable that most, though not all, individuals who have AIDS have been exposed to it. How- ever the majority of individuals who have antibodies directed 10 Health / PAC Bulletin Bill Plympton against LAV HTLV- /I II do not have AIDS as defined by the CDC. Other Hypotheses Is it possible that HTLV LAV- /I II is not the cause of AIDS? Although AIDS has not fulfilled Koch's hypotheses (the stand- ard proof that a proposed agent is the cause of an infection), and is presently untreatable, this is a heretical question within the scientific community. Nevertheless, it is certainly pos- sible that LAV HTLV - /I II is itself an opportunistic infection. Some individuals with AIDS show no evidence of LAV HTLV- / III. In reports published by Dr. Gallo, it could be isolated from only 50 percent of the patients with AIDS and 85 percent of the patients with the syndrome called AIDS Related Complex (ARC). " LAV HTLV -/ I II is the major identified cofactor in the devel- opment of AIDS. However, since AIDS expresses itself dif- ferently in different populations, it is possible that other fac- tors are significant in its development. This could explain why Kaposi's Sarcoma is a common form of AIDS among gay men but rarely found among addicts with AIDS. The AIDS Test and What It Means Dr. Gallo developed a simple assay for measuring the pres- ence of antibody to the LAV HTLV- /I II virus, using a tech- nique called Enzyme Linked ImmuniSorbent Assay (ELISA). This AIDS test is now a commercially produced kit manu- factured by several drug companies. Although this method- ology is widely used, it gives false positive results with dis- turbing frequency. In an actual test of blood from 1.1 million people, 10,000 samples were labelled positive by the ELISA method. However more accurate confirmatory studies per- formed on the 10,000 units, found that only 292 actually had antibody to HTLV LAV- I/I I. Thus 97 percent of the positive out- comes on the ELISA test were incorrect. And of these 292. the number who actually had AIDS is not clear. " Much of the confusion about the significance of the test results from the unusual way in which the CDC originally defined AIDS. Seeking to restrict the case definition in the absence of an etiologic agent, the CDC defined AIDS as the presence of Kaposi's Sarcoma or an opportunistic infection in an otherwise normal individual. This narrowed the AIDS population to a group dying at an alarming rate: almost 100 percent mortality within three years of diagnosis. AIDS could be defined quite differently - as a spectrum of illness in which the presence of opportunistic infections represents only the most severe form. There is reason to suspect that most individuals who are infected with the AIDS agent have only minor flu like - symptoms and are never sick again. Some develop ARC, which is characterized by symp- toms such as swelling of lymph glands, weight loss, chronic diarrhea, and oral thrush. The official position of the New York City and New York State departments of health is that people who have a positive antibody do not necessarily have AIDS. The U.S. Department of Defense seems to think they do. Who is right? Asymptomatic individuals may be infected with LAV HTLV- / III and they can transmit this infection to others unknowingly. Some individuals who have antibody to LAV HTLV - /I II may also have live virus in their body. This is the basis for the policy of screening the blood supply for LAV HTLV- /II I an- tibody. It is also a reason why individuals might want to know their own antibody status. Commissioner Sencer has testified that 15 percent of the inhabitants of New York City have an- tibody to LAV HTLV- I/II . A long term study which has followed 6875 gay men in San Francisco since 1978 has found that 262, 3.8 percent, have developed AIDS. In a representative sample of the entire group consisting of 435 men, 73 percent have tested positively for antibody to LAV HTLV - /I II during the six to eight years of followup; the majority have had a positive antibody test for more than three years. More than 70 percent of those infected for more than five years have not developed AIDS or any AIDS related illness. Approximately 25 percent of this group had ARC symptoms such as generalized lymphadenopathy or oral thrush, which are considered to be related to AIDS. Individuals with this " ARC " may in time develop AIDS, or they may not. Among gay men with generalized lymphadenopathy in San Francisco who have been followed for up to three years, only six per- cent developed AIDS. " Does the presence of antibody to LAV HTLV -/ III mean that the individual will develop AIDS? Based upon present evidence the great majority will not. A key issue is the incubation period. One estimate of its length can be derived by analyzing individuals who have got- ten AIDS following blood transfusions. A study of 18 patients. with transfusion related AIDS found that the average time from transfusion to development of the disease was 29 months, with a range of 12 to 52 months. " Another estimate of the incuba- tion period can be calculated by looking at the San Francisco cohort mentioned above. In that group, the average time from appearance of antibody to development of AIDS was 43 months. This may be slightly shorter than the actual incuba- tion period, since some of these men already had the antibody when they were first tested. The CDC estimates that between one and two million peo- ple have LAV HTLV- /I II antibody. Assuming the average in- cubation period is between two and five years, and three to five percent of individuals who test positive for antibodies to LAV HTLV -/ I II develop AIDS, then there are probably 30,000 to 100,000 people who currently have antibody to LAV HTLV- / III who will get it. Since AIDS is still spreading within risk groups and beyond them, the number of people who are an- tibody positive will continue to increase rapidly, at least doubl- ing within the next 12 months. Until AIDS can be prevented, the number of people who will develop it will continue to in- crease dramatically. From the beginning, AIDS was associated with " high risk groups, " initially including homosexuals, hemophiliacs, heroin users, and Haitians. Currently the groups considered at high risk include heterosexual partners of individuals at high risk and individuals from countries where AIDS is common. From the U.S. public health perspective, these countries are in Africa. From a European perspective, the U.S. belongs in the same category. Although gay men and intravenous drug users are clearly at great risk, this susceptibility could be a function of their behavior or merely an expression of the way the disease is spread. It is not known whether contracting AIDS requires. multiple exposures to an infecting agent, perhaps LAV HTLV- / III. It is likely that as with other infections, the chance of transmission is much greater with exposure to a larger or multi- ple dose of the infecting agent. The epidemiology of AIDS is similar to that of other vene- real diseases. Organisms which cause them are not highly contagious - syphilis is not contracted from toilet seats. The AIDS virus is easily destroyed by common sterilization tech- niques, and is not transmitted casually because it cannot easily survive apart from living cells. People who cuddle a child or a loved one with AIDS will not be infected. Family members who share food and housing with AIDS patients but are not sexually intimate with them do not develop a positive antibody test. 1,3 Contagion requires the intimacy of sex or shared needles. Health workers who care for AIDS patients are not at risk unless they are stuck by a contaminated needle. " Safe sex " has been promoted for both gay men and hetero- sexuals as a way of avoiding infection by limiting exchange of body fluids during sexual activity. Although this is not pro- ven, it is probable that condoms prevent the spread of AIDS from infected semen. It is possible that spermicidal jelly might kill the AIDS agent. Dr. David Sencer, New York City's Com- missioner of Health, has advocated decriminalizing posses- sion of needles and syringes so drug users can purchase sterile " works " without a prescription. Adopting such a policy, par- ticularly if amplified by the distribution of free needles and syringes, could have enabled hundreds of thousands of drug addicts to avoid exposure to the AIDS agent. Epidemiologic evaluation of current high risk groups may provide information about AIDS transmission which will help in developing strategies of prevention, but the current prac- tice of stigmatizing members of risk groups as the people responsible for the spread of AIDS is victim blaming of a most terrifying sort. Many have sympathized with the eight year old New York City child who hears herself vilified daily as a poten- tial murderer because she attends school, however public sym- pathy for the gay men, intravenous drug users, and prostitutes who are identified as carriers of AIDS is much more limited. The vigor and viciousness of attacks on these groups will doubtless continue to mount. Currently, most heterosexual individuals in the U.S. with AIDS or with positive antibody tests are drug addicts, sexual partners of drug addicts, or hemophiliacs. However AIDS can spread through heterosexual contact, and a majority of drug addicts are heterosexual, so until effective strategies for preven- tion and / or treatment are developed an increasing number of AIDS patients will be non addict - , sexually active men and women. Once this occurs, the notion of risk group will no longer be useful epidemiologically and will only serve a punitive or stigmatizing function. Women and AIDS: Reproductive Rights Challenged The risk of the HTLV - III / LAV infection and of AIDS in infants born to infected mothers is substantial but has not yet been quantified. Health / PAC Bulletin 11 The Public Health Service has recommended that women with clinical, epidemiologic, or serologic evidence of infection with HTLV - III / LAV_should postpone or avoid pregnancy to prevent transmission to the fetus or newborn. Women who may have been exposed should have a serologic test for HTLV - III / LAV before con- sidering pregnancy. Premarital and prenatal screening for antibody to HTLV - III / LAV should be seriously considered by physicians or clinics providing care for women in populations with increased risk of infection, such as intravenous drug users. 14 J. Curran, et al., CDC, Atlanta Research on AIDS is now focusing on women. Studies have demonstrated that AIDS can be spread heterosex- ually, although so far in the U.S. this has occurred almost ex- clusively where one of the partners is a drug addict. In Africa, AIDS is primarily a disease of heterosexuals. There are no published data on the incidence of AIDS among prostitutes in the United States. Some reports say that pros- titutes have transmitted AIDS to military personnel, but this evidence is suspect, since homosexual activity and drug use while on active duty are grounds for dishonorable discharge, but visiting a prostitute is not. Nevertheless, prostitutes have been labelled a major potential source of transmission. Calls for action against them, including screening of all women ar- rested for prostitution, will undoubtedly be heard. Judges may become reluctant to release prostitutes with AIDS from jail. Actually, transmission of most venereal disease probably oc- curs more easily from male to female than vice versa. Another victim blamed. The CDC and New York State are each funding studies on the transmission of AIDS to children by mothers who have an- tibodies to LAV HTLV- /I II. These studies are attempting to determine if the health of these women is adversely affected by AIDS during pregnancy, if they have less healthy babies, and if their babies carry the LAV HTLV- /II I virus. The studies are being performed in locations considered to be " geographically high risk. " In New York City, that means the poorest neighborhoods with the greatest concentrations of urban women addicts, who are primarily black and hispanic. Research has found that AIDS can be transmitted from mothers to their babies. Of the 72 cases of children with AIDS reported so far to the New York City Department of Health, some con- tracted it through blood transfusions or because they are hemophiliac and received AIDS contaminated clotting factors, but the rest have mothers who were exposed to AIDS through intravenous drug use or through heterosexual contact with drug addicts. These studies will certainly demonstrate that it is bad for the health of mothers and their babies to be poor and non white - and an addict in 1985. They may also accurately evaluate the risk of vertical transmission, but they may not. Such studies definitely do entail dangers. If women want to know their an- tibody status because they feel that will help them in evaluating pregnancy risks to themselves and their child, that informa- tion should be available to them. However, this information must be obtained with informed consent and protections preserving anonymity; confidentiality must be completely guaranteed. It is also possible, given current hysteria about AIDS, that the study results will be used to justify mandatory premarital " AIDS testing " for women who are " geographically " or " epi- demiologically " in the high risk category. This fall the Republican candidate for mayor of New York City has demanded screening of health workers, teachers, and beauticians. On October 18 the U.S. Department of Defense let it be known that it will screen all 2.1 million military per- sonnel for antibody to the LAV HTLV- /I II virus. Those found to have AIDS are promised medical treatment and counsel- ing and a medical discharge under honorable conditions. Those who test positive but show no signs of the disease will prob- ably have their duties limited, according to the Pentagon of- ficial who described the plan. Officials have explained that the Pentagon is concerned about the danger that those infected might transmit AIDS to other military personnel. It is also concerned about the cost of AIDS treatment. The Department of Defense has said it will not be screening for homosexuality or drug addiction, but Lambda, the national gay legal defense organization, has at- tacked the new policy as an assault on the rights of gay men in the military. Some soldiers have already been dishonorably discharged because they have AIDS. This extended the previous policy of mass LAV HTLV- /I II antibody screening of recruits and barring those who test positive. specific, particularly if the results have serious implications. A false positive result incorrectly labels people who do not have the disease; a false negative result means that an in- dividual who has the disease has not been detected. Finally, screening must have a purpose. Usually it is designed to find individuals who have an asymptomatic medical problem that can be treated. In the absence of available treatment, any screening program becomes suspect. Why screen for LAV HTLV -/ I II antibody? Individuals might want to know their own antibody status. It is possible to design systems which protect anonymity, guarantee confidentiality, and require the fully informed consent of individuals wishing to be tested, but they are not now generally available. The CDC believes that concerns for confidentiality should not be per- mitted to obstruct efforts to control the spread of AIDS. Who is Making the List? The names of those who test positive is on file. This list will prevent transfusion of possible infected blood, bar those on it from the military and, perhaps, determine which side of the quarantine equivalent individuals will live on. Insurance com- panies are publicly announcing that they may require a blood test to avoid insuring LAV HTLV- /I II antibody positive in- dividuals, since they are high risks. Many are becoming reluc- tant to write a new policy for any single male in New York City or San Francisco. At the present time, screening will only bring harm to peo- ple, particularly gay men and poor populations with a high in- cidence of drug addiction and prostitution. Mass screening would establish the basis for excluding millions from insurance coverage. It would also establish a list of those who could be placed in quarantine. Is it possible to establish a zone of quarantine around the millions of people in the United States who have the LAV / HTLV - III virus or are being exposed to it by the thousands every day? Who would administer the compulsory mass screening program that would establish admission criteria? It is too late for an effective quarantine. The ELISA test not only has many false positive results, it also has false negative ones. In a study of 96 patients with AIDS, ARC, or at risk for AIDS, four had no detectable antibody to LAV HTLV - /I II even though LAV HTLV - /I II virus was grown from their blood.'S This represents a detection failure rate greater than four per- cent among people who could potentially transmit the disease. At this rate, among the one to two million people exposed to 12 Health / PAC Bulletin date, 40,000-80,000 would escape detection. Many people would either refuse testing or avoid being tested. What kind of sanctions would be used against in- dividuals who refuse to be tested? How often would testing be required? If a quarantine were imposed, what form would it take, and how would it be enforced? One can envision an apartheid - like pass system in which each person could be re- quired to demonstrate his or her current antibody status. AIDS Policy: Research, Treatment, and Prevention The federal government is currently providing miserly fund- ing for research to develop and test new drugs to treat AIDS. A program comparable in resources and public support to the one we currently devote to cancer would be appropriate. The National Cancer Institute receives approximately $ 1 billion a year, and about the same amount will be needed to guarantee care and develop effective treatment regimens for AIDS pa- tients. Like smallpox, polio, and many other deadly diseases, AIDS may someday be prevented by vaccines - if the necessary commitment is made. The cost of caring for individuals with AIDS and ARC is enormous. New York City's considerable excess of hospital beds is being obscured by increased admissions of young men in their 20's and 30's with AIDS. In many New York City hospitals AIDS patients occupy up to 15 percent of acute care beds. It would be prudent to anticipate that these numbers will increase rapidly. Patients with AIDS quickly lose their jobs and their insurance coverage. Who will pay for their care? Individuals with AIDS usually do not die when they are first hospitalized. Each episode of serious infection can be treated, and potentially cured. There is effective treatment for Pneu- mocystis Carinii pneumonia, particularly when therapy begins at the earliest sign of infection. Antibiotics can stop fungal diseases. New therapies have worked against CMV viral infections. AIDS has a terrible prognosis, but treatment efforts should be aggressive and hopeful. Although many patients with AIDS. may at some time require hospice care, an activist and op- timistic approach to treatment should be the rule. Mechanisms for insurance must be provided, or hospital doors will close to AIDS patients, and large numbers of them who have infec- tions which could be successfully treated will be shunted to hospices or to their homes to die. Many AIDS patients do not have homes to go to, and only a pittance of hospice beds are available. For these sick and homeless men and women, the alternatives will be the shelter or the street. Urgent Tasks What should be our approach to AIDS? The elements of this program are threefold: education, research and treatment, and anti quarantine -. There is a pressing need for a national program of health education. This program should teach everyone how to live in a world with people with AIDS. Educational activities should be organized in all forums, including schools, com- munities, and the workplace. They should include issues of contagiousness and of techniques, such as safe sex and sterile needles, which can reduce the risk of contracting AIDS. They must not be homophobic or erotophobic. AIDS is giving sex a bad name; rehabilitation is in order. Research on the treatment and prevention of AIDS must be motivated by a sense of crisis and the level of funding must be determined with a sense of optimism. Most of the models for a national scientific effort of this magnitude are militaristic, like the Manhattan Project or Star Wars, but this is no reason to believe a crash health project cannot command similar energies. This effort will have to be complemented by national allocations of resources for the medical care of patients with AIDS. There is currently an unfortunate consensus that funding for medical care in general is excessive and should be reduced. This reduction is occuring during a period of decreased utiliza- tion of medical resources, and the system is contracting with limited disruption. However, the epidemic spread of AIDS may dramatically increase demand for medical resources, possibly overwhelming our current insurance and health care delivery systems. The insurance industry wishes to avoid this risk " " by screening people likely to get AIDS from their rolls. A com- prehensive national system of compassionate health care with universal entitlement stands as the only solution to this contradiction. Finally, quarantine - like actions should be sharply contested wherever they appear. Baths should not be closed. Schools should not exclude children with AIDS. Mass screening of any group should be resisted. For hundreds of years people with leprosy were quarantined in the mistaken belief that their disease was highly contagious. The suffering caused by this irrational ostracism was enormous. A similar triumph of ig- QUIZ TIME: CAN YOU FIND THE PERSON IN THIS CROWD WITH AIDS? Bill Rymptom085 fn ha Plympton AUN SPIRE. gn ION, 555 J i fave) ACR . SAVY i,, 2, 2 GO? ye TAA Ano Bill 32 (7% Ga FOYBOY 4 Health / PAC Bulletin 13 norance over science and compassion cannot be permitted with AIDS. Rather than allow this country to be divided into two camps, antibody positive and antibody negative, we can point the way towards a humane approach to this national and in- ternational tragedy. Y' 1. J.W. Curran, W.M. Morgan, A.M. Hardy, et al. " The Epidemiology of AIDS: Current Status and Future Prospects, " Science, Vol. 229, 1352-1357, 1985. 2. Brandt, A.M., No Magic Bullet, Oxford University Press, 1985. 3. Sonnabend. J.A.; Witkin, S.S.; and Purtillo, D.T., " Acquired Immune Defi- ciency Syndrome, Opportunistic Infection, and Malignancy in Male Homosexuals; A Hypothesis of Etiologic Factors in Pathogenesis, JAMA, Vol. 249, No. 17, 1983. 4. Barre Sinoussi - , F.; Chermann, J.; Rey, F., et al., " The Multiple Isola- tion of a T Lymphotropic - Retrovirus From a Patient At Risk for Acquired Immune Deficiency Syndrome, " Science, Vol. 220 868-871: , 1983. 5. Gallo, R.C.; Salahuddin, S.Z.; Popovic, M., et al.,. " Frequent Detection and Isolation of Cytopathic Retroviruses From Patients With AIDS Or Risk of AIDS, Science, Vol. 224 500-503: , 1984. 6. ibid, and Popovic, M.; Sarngadharan, M.G.E. Reed, et al., " Detection, Isolation, and Continuous Production of Cytopathic Retrovirus (HTLV- III) From Patients With AIDS and Pre AIDS -, " Science, Vol. 224 497-500: . 1984. 7. " Update: Public Health Service Workshop on T Lymphotropic - Virus Type III Antibody Testing - United States, " Mortality and Morbidity Weekly Report, Vol. 34, No. 31, p. 477, 1985. 8. ibid. 9. " Update: Acquisition of AIDS in the San Francisco Cohort Study, 1978-1985, " MMWR, Vol. 34, No. 38, p. 573, 1985. 10. Fishbein, D.B.; Kaplan, J.E.; Spira, T.J., et al., " Unexplained Lym- phadenopathy in Homosexual Men, " JAMA, Vol. 254, No. 7, p. 930-936, 1985. 11. Jaffe, H.W.; Sarngadharan, M.G.; Devico, A.L., et al., " Infection with HTLV - III / LAV and Transfusion Associated Acquired Immune Defi- ciency Syndrome, " JAMA, Vol. 254, No. 6, p. 770-774, 1985. 12. 12. MMWR, Vol. 34, No. 38, op cit. 13. G. Friedland, personal communication. 14. Curran, op cit. 15. Salahuddin, S.Z.; Markham, P.D.; Redfield, R.R., et al., " HTLV - III in Symptom - Free Seronegative Persons, " Lancet, p. 1418-1420, 1984. Peer Review continued from page 2 cinerator's manufacturers had specified different temperatures according to the particular mixes of chemical wastes to be destroyed. Although both the manufac- turers and the Irish Institute for In- dustrial Research and Standards (IIRS) specified that 750 degrees was the minimum temperature required for sol- vent wastes, Merck's incinerator was under 500 degrees for 504 of the 1382 hours it operated in 1981; from Septem- ber 1982 to February 1983 it was operated at temperatures below 500 degrees 50 percent of the time. Merck claimed in court that its emis- sions were within " acceptable " levels, but this is impossible to verify since un- til 1982 Merck didn't bother measuring emissions from the incinerator stack. Furthermore, Merck admitted in court that it was impossible to say what chemicals would be formed by incom- plete combustion of its toxic wastes and that one byproduct of incomplete com- bustion of indomethacin is monochloro- benzene, a precursor of the deadly chemical dioxin. Merck also admitted that emissions of chloroform from the stack could decompose to phosgene, which is also highly toxic. Environmentalists who claim that Merck has indulged in hazard export also point to Merck's admission that its Ballydine incineration destroyed only 98 percent of solvent material; in the U.S. 99.99 percent destruction is mandatory. Under U.S. Environmental Protection Agency rules, toxic wastes must undergo a complete analysis by a third party before approval for incineration; Merck's Ballydine analysis could not be de- scribed as complete. Because chlorine cannot be destroyed by incineration, the EPA requires the use of scrubbers to remove hydrogen chloride from exhaust gases; Merck's Ballydine incinerator doesn't have a scrubber even though hydrogen chloride emissions are recog- nized to be a problem at the plant. Some local observers claim that no matter what evidence had been produced against Merck, political factors preclud- ed a court decision favoring Hanrahan. The possibility that Merck would with- draw from Ireland, wiping out 250 pay- checks in an area of high unemployment at a time of major job losses, was a po- tent threat. The state and the judge must also have been concerned that any deci- sion against Merck could discourage fur- ther investment by U.S. chemical and drug multinationals - a basic element in the Irish government's development strategy. The Irish Green Alliance has called for the introduction of freedom of infor- mation legislation in Ireland, citing the difficulties the Hanrahans had in obtain- ing information from Merck before they began their legal action. Other environ- mentalists have called for rapid Irish im- plementation of the Common Market's " Seveso directive, " which would compel a company with factories which contain major hazards to disclose information on their use, storage, and disposal of toxic chemicals to both the workforce and the general public, as well as to establish and publish plans for evacuation in the event of a serious emissions accident. More pessimistic environmentalists predict that such legislation is sure to be delayed and diluted by the government, and only a major catastrophe will force the state to take action. Ballydine is not, unfortunately, the only place where such a catastrophe could occur. For example, some 35 miles from Ballydine another toxic legacy of Ireland's development by North American multinationals is un- folding at Nenagh. Tailings from a lead and zinc mine abandoned by the Mogul Co. have already hit local residents with streaming eyes, chest complaints, and spitting blood as well as cattle deaths. Two families had to abandon their homes temporarily when large clouds of dust from the tailings " pond " contaminated their farms. As in Ballydine, the state has been less than vigorous in its response. response. Environmentalists expect such prob- lems to increase, particularly since the Merck verdict is a definite indication that these hazards are unlikely to be amelio- rated through the legal system. The Merck case is not over yet, however. John Hanrahan intends to appeal the court's decision to the Irish Supreme Court. T. Jones Dublin, Ireland 14 Health / PAC Bulletin Small Opportunities, Deep Pitfalls Occupational Health in Local Health Departments by Barbara Materna, Jerry Roseman, and Noah Seixas ur 109 million workers pay a heavy toll in lives, suffering, and decreased productivity because this country has no com- prehensive public health policy to eliminate avoidable hazards to health and safety. The Occupational Safety and Health Act of 1970, the federal government's response to the problem, provided regulations for protections such as safe exposure levels for specific chemicals, re- quirements on the use of personal protective equipment, recom- mended work practices, and, in some cases, medical monitoring programs for exposed workers. But the OSHA system was flaw- ed from the start. Enforcement has relied on a relatively small number of inspectors and subsequent enforcement actions by OSHA's legal department. One of the primary elements in an ef- fective preventive program is worker control over the process of identifying and correcting hazardous plant conditions, yet the Act gives workers no control and only minimal input. Compare this to Sweden, where injuries and illnesses have been dramatically curtailed by a strong regulatory apparatus which relies heavily on trained worker health and safety delegates in every plant in the country. These delegates have the authority to identify and evaluate potentially dangerous conditions, and can even stop production when they find imminently life threatening - health or safety problems. Under the Carter Administration, OSHA policy concentrated onstronger enforcement of federal regulations, and some effort was made to increase worker involvement through increased funding for worker training and education. The Reagan Administration has effectively dismantled this system, originally established to substitute for ineffective or non- _ existent state and local programs. It has shifted the emphasis back to support for state and local involvement, voluntary compliance. by industry, and workplace health promotion. Enforcement has been minimal, and worker education programs have been decimated. Recently, without explicitly supporting the Reagan policies, leading public health journals have carried editorials and articles in praise of state and local initiatives in occupational health; the current director of the National Institute for Occupational Safety and Health has joined this chorus. The arguments for this position are generally based upon the alleged benefits of decentralization and the flexibility of local agen- cies. Implicitly, they represent a rejection of the confrontational regulatory stance taken by OSHA in earlier years in favor of the Barbara Materna, Jerry Roseman, and Noah Seixas have all worked with state and local agency occupational health pro- grams in New Jersey. more conciliatory relationship with employers favored by local health agencies. Certainly, not all public health activists would share this perspec- tive on the potential of state and local programs. Many profes- sionals committed to increasing worker involvement and frustrated with traditional avenues of health and safety activity have entered state and local government programs in hope of finding an arena for more effective preventive work. The key question is whether the flexibility they perceive in these local public health programs outweighs the limitations inherent in their position within the political system. Local occupational health initiatives appear to offer significant opportunities for developing creative approaches to worker involve- ment and other crucial aspects of effective occupational health ac- tivity. However a closer look at the experience of local occupa- tional programs in New Jersey and its problems will provide a more realistic view of how these initiatives fit into the " system " of occupational health, and public health, in the U.S. A Look at One of the Programs Historically, state agencies have done little about occupa- tional health problems, and with a few exceptions local health departments have done nothing. In fact, the poor record of the states in regulating occupational hazards was repeatedly cited as a major reason for the creation of a federal agency - thus OSHA. During the 15 years since its establishment, state and local involvement in occupational health has continued to be minimal. Only a handful of state and local health agencies have had any program at all, and those that do exist have been small and ineffective. In New Jersey, a very small occupational health program was maintained in the state health department during the 1970's. In 1978, when the National Cancer Institute published its cancer atlas showing New Jersey to be a high risk state, interest in an expanded program started to be felt. During this period, awareness of and activity around occupational and en- vironmental health hazards also increased among organized labor and environmental groups. In response to the pressures generated by this activity, the state began to expand its occupa- tional and environmental health programs. In environmental health, one aspect of this expansion was funding for occupa- tional health programs in local health departments beginning in 1980. These programs consist of one or more industrial hygienists working in a designated region or county; currently there are five, covering a total of about six counties. The hygienist works under the direction of each municipality's Health Officer, the primary local official responsible for " protecting the public Health / PAC Bulletin 15 health. " Because occupational health is a new subject to the Health Officers, there is often little understanding of what the possibilities are, and what their ramifications might be. Con- sequently the activities of the individual industrial hygienists can vary greatly. What Makes a Good Program The effectiveness of any preventive occupational health and safety program can be evaluated according to its ability to ac- complish four tasks: * Conduct thorough plant investigations e Enforce strong workplace standards Plan and carry out comprehensive preventive programs tailored to meet the needs of the communities they serve * Involve affected individuals or groups of workers in the iden- tification, evaluation, and remediation of a hazardous con- dition. To a large degree this is the task that has the most significance for improving work conditions. While experiences have varied, it is possible to draw general conclusions about the performance of New Jersey's local pro- grams in each of these areas. Plant Investigations Recently, responding to a request from workers to investigate their exposures to noise and organic solvents, a local program industrial hygienist presented herself at the worksite and asked to be shown the work areas. Management reluctantly agreed, cautioning her not to converse with employees - several of whom later reported that there was a strong fear that anyone caught speaking to her would be fired. In the middle of the walk through - , the plant owner appeared, physically grabbed her, and escorted her to the door. Far from quickly responding with legal pressure to substan- tiate the right of the local health inspector to conduct an in- spection, the local Health Officer called the company and apologized for any disruption in plant operations the industrial hygienist might have caused. Eventually he did back up the in- spection, but his initial response is a good indication of how much support the industrial hygienist could rely on. through of a facility with little or no worker involvement. If the hygienist attempts to elicit needed information from workers, the employer may further restrict the scope and depth of the inspection. Even with greater support and powers, the industrial hygienist's grossly inadequate resources and multitude of responsibilities would make thorough coverage of local worksites impossible. A typical program employs one hygienist per county, with limited funds from the state and local health agencies for non salary - expenses. The hygienist is responsi- ble for all occupational health and safety needs of as many as 23,000 employers and 400,000 workers. His or her access to the state occupational health program's analytical laboratory, sampling equipment, library, and personnel can supplement POISON DISPOSEY OF QUIETLY LV V D W N CPF /MSC the local program's resources, but this in no way redresses the problem of insufficient staff. In fact, the state program is cur- rently so overextended that it delegates many of its own respon- sibilities to the localities. The industrial hygienist's workload also includes par- ticipating in training, education, and enforcement activities under the state Right to Know law, conducting workplace evaluations as part of the N.J. Public Employees OSHA bill, performing asbestos inspections in public buildings, and monitoring asbestos removal projects. Local health department personnel, health officers, and sanitarians are unable to pro- vide consistent assistance because they lack the requisite. training. I SAID: I'M AFRAID YOUR AUDIOGRAM IS NOT BAD ENOUGH ' TO QUALIFY YOU. FOR COMPENSATION, / CPF Workbo The COMPENSATION! GREAT! Admittedly this is an extreme case, however it is represen- tative of the Health Officers'sensitivity to industry opposition to occupational health activity, and the consequent difficulties faced by industrial hygienists. Lacking explicit legal power to conduct occupational health investigations, they must rely on employer willingness to supply requested process and materials information and permit sampling and employee in- terviews. The result is frequently a management - led walk- Enforcement Capability A local Health Officer who found dangerously dusty condi- tions in a small rubber compounding plant asked OSHA to in- vestigate. OSHA's response was a letter to the company inquir- ing about its conditions; no inspector was sent. The company replied with a letter saying it did have a ventilation problem, but this was being corrected, and noted that no toxic chemicals were used at the plant. When the industrial hygienist returned a year later he found the situation had not improved; carbon black, tale, and other rubber additives, including several car- cinogens, were still used in an uncontrolled manner. A health survey conducted by the state health department later found asbestos - related changes on the x rays - of seven of the 13 cur- rent employees. The company moved soon after this investiga- tion. No OSHA fines were issued and none of the 13 workers received any compensation. All 13 of them, older black men, several with potentially disabling lung disease, were left without jobs and little prospect of re employment - . In theory, a local health department can force reductions in workplace exposures by referring the problem to OSHA or through enforcement of local health ordinances. OSHA's value, as the above example indicates, is pro- 16 Health / PAC Bulletin LOOKS LIKE WE'RE ALL THROUGH, MR. BINKLEY... YA GOT NO MORE HEALTH HAZARD HERE. WE REMOVED ALL THE TOXIC WASTE FROM YOUR BASEMENT... STANLEY HERE FOUND AN EMERGENCY STORAGE TANK JUST DOWN THE BLOCK, DIDN'T IC ERT. AINLY YOU, STANLEY? DID HEY! WHAT'S THIS GUNK IN MY HOT TUB?! EPA EPA EPA how! EPA SLAT STAYS THE COURSE gt COURSE Wave De 1903 EPA blematic. Its enforcement capabilities have always been limited. Since President Reagan took office its powers have been deeply eroded; currently it treats a report of local pro- gram findings as an " informal request, " not a basis for enforce- ment action, and frequently responds with a letter of inquiry to the company. Recourse to local ordinances can be similarly frustrating. No local statutes specifically address workplace hazards; most communities base their local efforts on the " Public Health Nuisance Code, " which permits the Health Officer to order abatement of any " matter, thing, condition, or act which is or may become detrimental or a menace to the health of the in- habitants of the municipality. " Although this is often the only ordinance even remotely applicable to the workplace setting, most Health Officers are unwilling to use it to force needed improvements. Many say the wording is so vague that it could not withstand legal contest by an employer, and / or that in- " habitants, " means only residents of the community, and not those working within its borders. A Paucity of Planning A pregnant woman working in the front office of a paint manufacturer called her local health department to find out if the strong odors she was smelling could be harmful. The in- dustrial hygienist who followed up found that these solvent vapors were only the beginning. About 90 employees were mix- ing paint products in an almost entirely uncontrolled environ- ment. Management resisted all investigation efforts and refused to identify all but about ten solvents and a few pigments used at the plant. In addition to the solvents, workers were also handling chromate pigments and asbestos without any ex- posure controls. No one in the plant was aware that chromates are known carcinogens. Although a thorough evaluation of the plant would have re- quired medical tests, several days of work observation, and air sampling, the investigation took the form of a single day of air sampling. The results, indicating exposures to hexavalent chromium and mixed solvents over OSHA standards, were for- warded to the company and to the Health Officer in charge along with recommendations for environmental control action. The Health Officer gave no follow - up support. The company produced an OSHA report which had not found any excessive exposures as evidence that the plant had a " clean bill of health. " The process did give the industrial hygienist the opportuni- ty to inform the individual complainant and her fellow workers of health and safety hazards they faced and possibly stimulate them to initiate further self protective - activity, but the only im- mediate tangible improvement was the substitution of the ap- propriate respirator filter cartridge for the wrong one previous- ly given workers handling the chromate pigments. Local health departments are extremely reluctant to engage in planning, particularly in the area of occupational health. They give very little support to inspectors who wish to develop a rational approach to workplace problems involving iden- tification of the most common occupations and industries in an area, researching work processes and associated hazards, identifying high risk groups, and targeting investigations and studies based on this information. Instead, they direct much to their effort to complaint - response work - often, it seems, with the aim of quieting individual complainants and providing a buffer between the community's needs and the politicians responsible for serving them. HELLO. HELLO SIR! THIS IS THE ' SOW " EPA SEEM... WE SEEM TO CHEMICAL HAVE FOUND SOME COMPANY TOXIC WASTE THAT YOU ER... LOST. WELL CLEAN IT UP! YES WELL...... WE WERE WONDERING IF YOU MIGHT CONSIDER PAYING A MODEST FINE. = A FINE?! A FINE?!! HAVE A WORD A M - ME? WITH HIM, STANLEY... FINE?! " T SOW CHEMICAL SO CHEM 5-20 Health / PAC Bulletin 17 Individual complaint response can, certainly, be an impor- tant component of public health intervention, and can be part of a comprehensive strategy. Individuals who lodge a com- plaint against their employer are taking direct action and ex- posing themselves to some degree of risk. Often these com- plaints (and occasionally reports from other health profes- sionals) identify some of the most serious occupational health problems. Nevertheless, even when a health department makes a serious effort to respond, its success is often as limited as in the example cited above. To transcend these limitations in individual plant investiga- tions, in a few instances industrial hygienists have attempted to initiate large scale projects with broader implications, such as profiling hazards in the county's predominant industry or focusing inspection activities in high hazard workplaces. Such projects offer an opportunity to characterize populations at risk, define potential exposures, and develop useful generalized data on existing health and safety conditions faced by a large number of workers in the community. Unfortunately, these efforts have not been widely supported by the local health departments. Such studies do not meet the primary goal of pacifying complainants. In addition, the Public Health Nuisance Code, a feeble enough tool for obtaining workplace access to investigate complaints, provides absolutely no right of access for investigatory activity, and industry is generally not accommodating to projects designed to uncover unsafe conditions. Similar sensitivity to industry - wide investigation exists at the state level. A few years ago New Jersey's State Health Depart- ment began a study of carcinogen exposures, exposure con- trol, and the effectiveness of training and education programs in vinyl chloride polymerization. The industry expressed uneasiness about the project, particularly the plan to question individual workers and labor representatives about work prac- tices and knowledge of vinyl chloride use. The project was subsequently shelved. Promoting Worker Involvement Workers trying to organize a local plant contacted the health department about conditions there. The hygienists held meetings with them to understand the problem areas, discuss the hygienists'approach and the limits of their investigation, and to discuss how the investigation and results might fit into the workers'overall strategy to improve conditions. When the hygienists approached the company to initiate an investigation, management said they could see the plant but not conduct interviews or return for air sampling. There was an organizing drive going on, they explained quietly, and the appeal for an investigation was only part of the organizing committee's management harassment tactics. The report on the walk through - , which included a review of the toxicology of the materials present and recommendations for follow - up air sampling and health evaluations, was quickly circulated by employees in the plant. When management saw the report, a company official immediately called the Health Officer in charge and demanded a meeting. It was quickly ar- ranged. At the meeting the plant officer accused the hygienists of wrongly interfering and demanded an apology. The Health Officer complied, with a letter stating the problems of assign- ing risk on the basis of visual inspection and regretting any trouble his department had caused. In another investigation, the industrial hygienists met regularly with union representatives to design the study pro- tocols, better focus efforts in the plant, and prepare a final report that would have significance to the workers involved. The meetings included extensive discussions on how the recom- mendations would fit into the union's impending contract negotiations. In this case, the union was actually able to Cleanliness is next to Joblessness MARGULIES CPS IN DC Gazete NA / CPF negotiate an agreement specifying that the recommendations given in the report would be adopted and enforceable by the contract. Involving workers in the identification, evaluation, and remediation of hazardous workplace conditions is probably the single most effective component of a good program. Govern- ment activity alone cannot stimulate or create worker interest and involvement, but in plants with an active worker base it can significantly affect what is accomplished. This might well be the area in which local public health workers can have the most impact, particularly given all of the difficulties in the other approaches discussed above. As the examples above show, although it has been argued that even weak programs can help unorganized workers at small worksites who suffer gross violations of standards, the ability to win improvements is largely determined by the activism of the workers. Worker involvement should begin with the development of priorities for a community's occupational health program. This could well be achieved through meetings between health of- ficials and local union representatives to discuss the program, its limitations, the ways in which public intervention might be useful to worker concerns, etc. Currently, however, Health Of- ficers pay most attention to meeting the needs and concerns of local industry. This orientation has led them to spend much of their time establishing programs such as first aid or CPR training, which are widely offered by numerous other groups and have little relevance to preventing occupational disease. Worker involvement is also vital in planning and conduct- ing effective individual investigations. At present, including workers or their representatives has not been a priority for the health departments; explicitly involving them in the investiga- tion by meeting with them on company time, by involving them in the walk through - , or by discussing the development of in- vestigation priorities has been virtually impossible. Finally, worker involvement is crucial in education about work hazards, methods of exposure reduction, and worker rights to a healthy workplace. Again, the current reality is quite different. The reluctance of industry to allow employees to talk privately with health officials about plant conditions and the reluctance of health departments to conduct programs not ap- proved by management have meant that education designed to meet workers'needs and conducted without a strong manage- ment presence has not been developed or supported. Such activity has nevertheless taken place, usually without 18 Health / PAC Bulletin the endorsement of the health department. For instance, after a walk through - inspection of an explosives manufacturer (con- ducted after a fire had broken out in the plant) the industrial hygienist recommended an educational program. Management agreed, believing this would be a limited, non threatening - intervention. The hygienists insisted, however, that management not be present, that all workers attend, that the training be conducted for a full day, and that the employer pay all lost time salaries. Because the company was relatively small and the hygienists insisted, the conditions were met. The result was a tremen- dously successful session. Workers shared their fears and ex- periences with each other, not just about this job but about others. The hygienists were able to answer some of their specific questions about health and safety hazards. Perhaps most importantly, the group discussed the limitations of federal, state, and local agencies in addressing the workers ' most crucial shop problems, and talked about the actions open to them. What Can and Can't Be Done Small and relatively devoid of legalistic and bureaucratic constraints, local health departments do allow scope for creative occupational health activity. However, as is evident, this relative freedom is limited by the relative conservatism and political sensibilities of health department officials. > 8 #8 s = 8) DANGER EMPLOYEES Ken / Light ONLY 9 eens eel Fw ee CPF themselves. The Freeholders of Burlington, a heavily in- dustrialized county where large chemical industry employers such as Texaco, Tenneco, and Hooker Chemical have plants, have actually refused a state grant for an occupational health program. The underlying message to the health officer is to create the appearance of an energetic health department pro- gram without substantively affecting local business. As the New Jersey experience indicates, local health depart- ments cannot fill the gaps left by a decimated federal agency. Strong occupational health protection requires a well planned and coordinated system involving federal, state, and local agen- cies, but relying heavily on workers in each plant trained to recognize health and safety hazards and empowered to help correct them. The current concentration of resources on municipal, coun- ty, or state health agencies represents nothing but a screen for increasing deregulation, with dangerous consequences for the health and safety of workers. Health professionals should recognize this trend for what it is and not be misled by the idea that local initiatives carried out in a deregulatory climate are meaningful public health activity. Whether these programs are organized on a local or federal level is not crucial; what is crucial is the degree of worker involvement in safety and health programs, and the enforcement capability of government agencies. As we have seen, local activities responsive to the needs of workers predictably arouse the ire of industry and are sup- pressed by the local health.department. Still, in the absence of a comprehensive national health and safety policy, occupa- tional health workers at every level of government must use. whatever power they possess to involve workers in every step of the process of hazard evaluation and abatement. Even under more liberal administrations, government - based solutions are always limited. Without the intimate involvement of a strong- ly organized worker movement in their planning and conduct, no occupational health and safety program can be truly effective. 0 Effective preventive occupational health work requires the backing of the health department for efforts to involve workers during working hours in the planning, conduct, and follow- up of investigations. Lacking this support, they can involve workers only outside the workplace. This severely constrains their ability to reach all workers in a plant, and to help pro- vide them with the information necessary for effective follow- up of the hygienists'findings and recommendations. The limitations of New Jersey's local industrial hygiene pro- grams are not surprising given the position of the health depart- ment within the political structure. As an arm of government, it must demonstrate a certain level of activity in the maintenance of public health in the community. However the Health Officer is appointed by the mayor of the municipality or the Board of Chosen Freeholders of the county, and depends on this political leadership for program support and job security. As politicians, the mayors and freeholders are closely tied to the business interests of the community. In order to remain politically viable, they must exhibit a large degree of respon- SK siveness to local industry and groups such as the Chamber of SHP / LNS Commerce. Frequently they own or manage local companies FOR A BREATH OF FRESH AIR SMOG S CIGARETTES FOR HAIR THAT SMELLS LIKE SPRINGTIME HAIR asbesto TASTES REAL! CHEMO - WHIP IXXX 00 Steve Karian Health / PAC Bulletin 19 The Sickness That Won't Heal Health Care for the Nation's Homeless by Michael E. Clark and Margaret Rafferty Henry, 42 years old, is comfortable, but it's been a long haul. Henry 42 years old is comfortable comfortable but it's been long haul benches and in doorways. Some months ago a street outreach team got to know him, meeting him on park benches, offering him cof- fee and kind words, slowly building up trust. When the team of- fered him a bed in one of New York's better shelters, he was reluctant - he had already refused to go to any of the City - run shelters because he had been beaten up at his first and last visit to one. After some convincing he agreed to give the nonprofit tem- porary shelter a try. Several months later his application for per- manent housing was accepted, and with support he was able to make the transition. Today Henry lives at the St. Francis Residence, a renovated SRO hotel owned and operated by the Franciscan Fathers. Although he is still quite guarded in speaking to the residence staff and much remains unknown about him, he does participate in the community life of the residence, a life with dignity and quality. Like the overwhelming majority of the homeless, Henry need- ed more than a place to live. He suffers from venous ulcers, hypertension, and anemia. While on the streets he tried to take care of them and was a frequent visitor to the local emergency room. Sometimes he would go to get warm (preventive medicine for hypothermia). He remembers the winter night the security guard told him he couldn't sit in the hospital waiting room, since the doctor had just written him a prescription and given him a follow - up appointment to the vascular and medical clinic. " Discharged " at three a.m. into five degree cold, he spent the re- mainder of the night over a steam grate in front of the hospital. When Henry moved to the shelter, the medical outreach team that visited once a week helped him dress his ulcers and prescribed anti hypertensives - and anti psychotic - medication. He now receives regular care at the Residence. Such " happy " endings are all too rare. Few of the homeless find permanent, affordable housing; most face, at best, years in substan- dard public shelters- the " new ghettos of the'80's " -- and high risk of early death. In increasing numbers they are seeking help for their " problem " in hospital emergency rooms and clinics because they have nowhere else to turn. Their experience reveals major disparities between what the American health care system offers and what disadvantaged groups in our country need. Who the Homeless Really Are Current estimates of the number of homeless people in the U.S. range from 250,000 to three million - the low figure com- ing from the Reagan Administration's Department of Housing Michael E. Clarke is a sociologist and a member of the Health / PAC Board; Margaret Rafferty is a worker with the homeless and co author - of the Shelter Workers Handbook. and Urban Development'and the higher estimates offered by those closer to the scene, such as the National Coalition for the Homeless. 1 Whatever the true figure, the homeless are unquestionably a heterogeneous group. Although those who are mentally ill have come to symbolize the " typical homeless person, " the ma- jority are neither single adults nor mentally ill. Many are unemployed adults, or the members of whole families whose welfare allowance is too meager to permit them to obtain hous- ing, or battered wives, or runaway youth. A New York State study by the Department of Social Services found that on a typical night the 20,000 people found in emergency accom- modations provided by government, churches, synagogues, or private charities included 11,000 members of families; more than 7,000 of them were children. + The Search for Medical Care Like thousands of other people, the homeless frequently turn to hospital clinics and emergency rooms for their health care. But clinic and other workers unanimously report that many of the homeless can negotiate regular care in such institutional settings only if an advocate goes with them, sits through the process, and listens to and supports what they say. 5 Homeless people mostly use public hospitals. This is hard- ly surprising: a recent study at New York's Bellevue, a municipal hospital, found that 80 percent of the homeless there had no health insurance. " Private hospitals, facing mounting financial pressures, have administratively " demarketed " the homeless along with other uninsured, poorly insured, chronically ill and / or lower class citizens. This " dumping " into public institutions is achieved through several techniques. Fee schedules can be raised to a level the poor cannot afford. Where this is politically impossible, the number of visits per- mitted individuals with diagnoses common among the poor can be strictly limited. The medically indigent can be asked to make appointments several months in advance and / or com- pelled to wait eight or more hours when they arrive for a scheduled appointment. ' Inpatient care is generally no more accessible. Formerly per- sons could be admitted to hospitals for long stays based on the severity of their chronic conditions; today tightened regulatory controls limit hospitalization to the acute stage. The new Medicare reimbursement system utilizing Diagnosis Related Groups heightens the financial pressures, since hospitals get no extra money for stays exceeding normal " " guidelines for each diagnosis. Frequently beset by severe and multiple ill- nesses, the homeless who make it into a hospital bed are very likely to be in the " outlier " category requiring unusually long and / or expensive treatment; their advocates are finding they 20 Health / PAC Bulletin must monitor care for the homeless even more closely than before. * The Emergency Room Because they lack residential stability and medical in- surance, it is even more difficult for many homeless to use the clinic system than it is for the poor in general, so they are prob- ably more frequent users of emergency rooms. Nowhere do their needs meet a more inappropriate response. Psychological issues affect any patient's condition, care, and prognosis; a homeless patient is almost by definition a worst- case nightmare. The high - tech world of today's emergency room has little to offer that could conceivably be as important to most homeless people as adequate housing, nutrition, or a job. In fact, unless he or she happens to be critically ill and in real need of heroic measures, the ER may only represent a very expensive way to get out of the rain. The vast majority do come for non emergency - reasons. In addition to the more traditional replies to explain their presence, the homeless An ie themselves say they are there to " get out of the weather, " " get a subway token, " " talk to someone, " or even " get a meal. " " They know the system so well - they know if they have chest Q pain or had a seizure we have to work them up that - means an eight hour wait and a good night's sleep in the ER at $ 130 (and most of what we have concerns adults exclusively), they a pop, " explained Mary, the emergency room night nurse at a do point to illness and disability rates far above normal levels. large city teaching hospital; she sees many of the local The most extensive recent report on the health problems of homeless people so often she knows them by name. homeless single adults is " Health and Homelessness in New Of course, in the most profound sense, these are " health York City " by James D. Wright, et al., published in January problems. Workers who have seen people go through the evic- 1985. This Robert Wood Johnson Foundation - funded study tion process and descent to homelessness testify to the rapid reviewed the records of 6415 homeless single adults in New and severe deterioration that follows for most of them. Yet the York City who visited clinics at various municipal and private health problems travelling the streets with homeless men and shelters over a 15 year period. " women in 1980's America are more reminiscent of the public The researchers found that the homeless are at much higher health concerns of a century ago than they are of anything to- day's emergency room is prepared to treat. If what is needed risk from most diseases than comparable populations studied in the National Ambulatory Care Survey are. With the caveat is a public health response, the average emergency room is un- prepared to deliver it - and so are most outpatient clinics and that the data exhibit all the difficulties inherent in retrospec- tive chart reviews inconsistent - and inadequate records, private physician's offices. variability in reporting between practitioners, and the bias of Trauma, Chronic Disease, and More including only those who sought medical care and shelter - the authors report they found unusually high incidence of: Although epidemiological data for the homeless are modest e Trauma, much of it severe Upper respiratory disorders e Chronic diseases and disorders of the lungs (e.g.. tuberculosis) OT * Diseases and disorders of the extremities (e.g., psoriasis, seborrhea, impetigo, unspecified rashes) QRCa yp e Hypertension (although the authors note that this finding was sy perhaps exaggerated by the existence of a hypertension screening program in most of the sites studied). " In a Swedish study, investigators followed over 6,000 per- sons registered at the Bureau of Homeless Men in Stockholm in 1969-71, gathering information from the Central Bureau of Statistics. They found that 971 of them had been registered for drinking offenses, and their overall mortality rate was four times the norm. Accidents were the leading cause of death, occurring at 12 times the expected rate. Suicides were four times the average, diseases of the circulatory system three times, and cirrhosis of the liver six times. 12 It is impossible to determine how much of this heightened mortality was due to alcoholism and how much to homelessness, but the overall ex- John cess was so great that at least some of it could reasonably be attributed to the lack of a home. Jenkis A study of 200 patients at the Manhattan Bowery Project in New York City found similarly disproportionate numbers af- Health / PAC Bulletin 21 S S John Jenkins fected by disease: * 64 percent had pulmonary disease (predominantly inactive. TB, chronic lung disease, and pneumonia) * 24 percent had dermatological disease (predominantly skin ulcers, lacerations, and contusions) i ten percent had gastrointestinal problems (predominantly liver disease and malnutrition) * nine percent had cardiovascular problems predominantly ( arteriosclerotic heart disease) Estimates of the percentage of homeless adults with mental disorders have aroused considerable debate. Outreach workers report that one fourth to one third of homeless single adults have a psychiatric disorder of psychotic proportions. 14 Although there has been a good deal of research over the past five years to determine the mental state of homeless adults, 15 no one has measured the effect of homelessness itself on mental health, nor is this mentioned as a variable in many studies. Poorly implemented policies of deinstitutionalization have unquestionably swelled the legions of the homeless. A study of 78 homeless persons in a small private shelter in Boston found 40 percent had psychoses, 29 percent were chronic alcoholics, and 21 percent had personality disorders; approx- imately one third had a history of psychiatric hospitalization. ' Substance abuse of alcohol and drugs is also dispropor- tionately high. According to several New York City Human Resources Administration studies " fully one quarter of homeless single adults admit to engaging in some form of substance abuse - and reliance on self reported - information undoubtedly results in undercounts. While the literature on homeless and runaway youth is ex- tremely limited, an excellently executed study by Shaffer and Caton found three types of psychiatric problems predominant among homeless and runaway youth: depression and suicidal behavior (30 percent); antisocial behavior 18 (percent); and a combination of these (41 percent). One third of the girls and one sixth of the boys had made at least one suicide attempt. Interestingly, although 70 to 90 percent had some mental health problems, less than one percent were psychotic. Nurses routinely encountered health problems among these runaways, including unwanted (as well as wanted) pregnancies, venereal diseases, substance abuse, and internal damage caus- ed by sexual paraphernalia.19 Irregular and poor quality meals and lack of sleep contribute to generally poor health among homeless youth as they do among homeless adults. Hygiene is often minimal, and they are afflicted by a high incidence of severe infections in addi- tion to malnutrition, anemia, lice, and tooth decay. " The health effects of homelessness on parents and children are difficult to quantify, but one study by the New York City Health Department found an 18 percent low birth weight rate among babies born to homeless women in hotels, more than twice the 8.5 percent figure for the city as a whole. Some of these babies are born prematurely and must spend weeks in special care units (at great expense). " Another, anecdotal, study found widespread malnutrition among " hotel children. Responding to these reports, the New York City Department of Health asserted its own evidence revealed lit- tle malnutrition; this evidence was never released. 23 More studies will be forthcoming with more data, but many of the needs are obvious. Families living in terrible neighborhoods in one small, rodent infested - room, lacking sheets, window barriers, refrigerators, cooking facilities, and cribs, face enormous burdens in maintaining good health. A high proportion of these families include pregnant women and infants. " Many of the homeless subsist on meals they cook on illegal hotplates, " reported the New York Times, " They keep medicine cool under running water or in toilet tanks and store baby for- mula and perishables in the open, often on outdoor window ledges exposed to pigeons, mice and the elements. " 24 Robert Hayes, attorney for the Coalition for the Homeless, estimates that there are about 1,000 homeless pregnant women and newborns among the ranks of New York City's homeless families. 25 Just finding a place to stay can be very difficult. One New York family had 15 different placements in a six week period, including four nights sleeping on the floor of the New York Q An ie 22 Health / PAC Bulletin City Emergency Assistance Unit. The mother suffered from epilepsy and had two seizures during this time. One of the two children has sickle cell anemia and has undergone open heart surgery and a right nephrectomy. After legal advocates re- quested an administrative hearing the family was finally placed in a hotel with cooking facilities. A woman who was flooded out of her apartment and now lives in a waterbug - infested eight - by - eight foot room with four children, four single beds, and no chairs, tables, or hot water reports that this is an " improvement " over the family's former quarters a barracks - style shelter where on any given night as many as 330 people sleep in one immense area. Shelters run by religious and secular nonprofit organizations tend to be smaller, friendlier, and more humane than those run by local governments. Most small facilities have developed makeshift arrangements for health care or at least health ad- vice, using local nurses, physicians, and / or social workers as resources. Some larger shelters have developed complete clinics staffed by volunteers. Washington, DC's Zaccheus Clinic opened in 1974 to meet the needs of homeless persons coming to a local soup kitchen. The budget of about $ 70,000 a year, coming entirely from dona- tions, includes salaries for a full time - (poorly paid) staff of four - a physician, two administrators, and a social worker outreach / worker. With the help of 100 volunteers, they deliver comprehensive primary care in a caring, supportive atmosphere.28 atmosphere.28 The all volunteer - physicians, nurses, and medical students of the Wallace Medical Concern have delivered free, on site - medical services to residents of the hotels and drop - in centers in the Burnside downtown - area of Portland since March 1984.29 The Johnson - Pew Program Health care units for the homeless such as Zaccheus, the Wallace Medical Concern, and Boston's Pine Street Inn are largely staffed by volunteers, however funded medical teams are becoming increasingly common in the nation's shelters. This is partly due to the National Health Care for the Homeless Program, a major new funding initiative by the Robert Wood Johnson Foundation and the Pew Memorial Trust. John Jenkins New York, with a housing vacancy rate below two percent, has virtually no available apartments that families on public assistance can afford. " Trying to find an apartment in the city for me and my four children on a welfare rent allowance of $ 281 is a joke, " com- mented one mother. Even in the poorest neighborhoods, one room apartments typically run $ 400- $ 500 a month. The gap between welfare shelter allowances and average rents is similar in most other urban areas, and the number of families " stacked up " in emergency facilities is soaring. In New York, the average length of stay now exceeds nine months. " The kids are really being damaged living this way, " warns child care expert and advocate Gretchen Buchenholz, " Children have to have predictability, consistency, stability, or they don't grow. I have watched those children deteriorate. They don't get enough sleep or enough school. They don't have their own possessions, their own toys, or their own neighborhoods. Instead of growing, they become smaller and more distant. 9926 " The Quality of Shelter To meet the needs of an escalating homeless population, some 111,000 shelter beds have been established around the country, over 41 percent of them in the past four years. " Most of the shelters are run by nonprofit agencies; their funding comes predominantly from religious and other nonprofit groups. Together these two foundations have allocated $ 19.6 million to support health projects in New York, Los Angeles, Detroit, Birmingham, and 14 other major U.S. cities. Individual cities will get up to $ 1.4 million over four years. The project is based on several premises about the homeless: that health care they sorely need is largely unavailable to them, that without good health they cannot resolve other basic prob- lems, and that health care programs can be effective for the homeless if they are conducted in appropriate settings and combined with other services and benefits. " Drawing on these conclusions, " says the program outline, " projects under this program will offer health services in local communities, supplemented by additional health and non- health services and benefits provided through community agencies and government programs. The Health Care for the Homeless Program will thereby serve as a national demonstra- tion of how coalitions of public agencies and voluntary organizations in our urban centers can address the problems of the homeless through a variety of health and other services that meet these people's special needs.... Each wide city - proj- ect should consist of specific efforts to deliver health services in shelters and / or a variety of other appropriate community residences or housing settings. 30 One goal of the program is to bring together different agencies assisting the homeless so that there will be better coordination among them at the local level. The program also assumes that the homeless population will not decrease any time soon; as part of their responsibilities under the grant, local providers of health services under the program must develop plans to institutionalize health services for the homeless beyond their four year funding. In some cases, this has already led to breakthroughs in easing documentation requirements for Medicaid eligibility and to new sensitivity among medical institutions to the special needs of various homeless populations. Figuring out how to extend these vic- Health / PAC Bulletin 23 tories and maintain them within a " mainstream " medical system driven by other priorities will be a major challenge to the program. Caring for the Homeless * The unusually high incidence of conditions such as tuber- culosis, viral hepatitis, and trauma among homeless adults sug- gests that basic public health measures are crucial in any ef- fective health care program for them. " Tuberculosis is a good example of a potentially lethal but curable disease that affects the homeless disproportionately. It spreads when an infected person coughs, expelling airborne droplets that are then inhaled by someone else. In theory, on- ly a single infected droplet can transmit TB. In practice, most healthy, well nourished - people will not be harmed even if they spend several hours in a nonventilated room with a TB victim. Shelter residents, on the other hand, are highly vulnerable. Many of them are elderly, undernourished, and / or alcohol or other substance dependent. Their cots are generally arranged close together in unventilated spaces. Housing them in their own apartments would dramatically reduce their TB rate, both by eliminating a great deal of contagion and by improving their resistance. With housing a rapidly receding dream in the current political climate, the most effective preventive measure is to assure adequate ventilation. Even this is often impossible, so beleaguered shelter workers have turned to installing ultraviolet lights, a fairly simple, cheap expedient that destroys TB mycobacterium. 32 Reducing contagion must be coupled with aggressive efforts to locate anyone with active TB by watching for symptoms such as coughing, weight loss, loss of appetite, fever (primarily in the evening, and so known as night sweats), coughing up blood, and fatigue. TB can be treated with drugs, but there are two problems. One is that it is fairly expensive- expensive- often prohibitively so for homeless people, who have difficulty establishing Medicaid eligibility due to an inability to provide the required documen- tation. In some cities local health departments provide free medication. The other problem is compliance. Many patients have dif- ficulty taking medication on a daily basis. Some lose it, some forget it, some simply refuse to take it. Resistant strains sometimes emerge when treatment lapses, leading to extend- ed complications. Some shelters actually dispense TB medica- tion daily to assure compliance and to minimize risks to the general shelter population. When shelter residents, often those with a history of psychiatric hospitalization, actively refuse medication, the shelter worker has the painful task of telling them that they pose a risk to others and must leave. This is especially unnerving when the temperature outside is minus ten degrees. A Psychotic Can Be Health Conscious Alice, homeless for the past two years, is very psychotic; she has constant hallucinations. However she realizes that liv- ing constantly on her feet - walking, dozing in doorways and subways - is very likely to give her leg ulcers. She therefore struggles daily to make sure she is readmitted to one of New York's " better " shelters, pays careful attention to her legs, and visits the vascular clinic of a local hospital at the first sign of skin breakdowns. Many of the people she sees there have been unable or un- willing to take basic preventive measures. Some do not replace John Jenkins ill fitting - shoes, for example. Others do not return to the clinic for a change of their Unna boots, which should usually be changed weekly; this can worsen an already serious condition. Lice, scabies, maggots, roaches, and bedbugs are frequent problems for homeless people, especially those who are men- tally ill and inclined to neglect hygiene - though it must be said that good hygiene requires considerable effort without showers, clean towels, and soap, all scarce in many shelters. Some of the homeless do go to laundromats regularly. Others adapt to street living by throwing their dirty clothes out and picking up new ones at clothing distribution centers. There are. however, others who never change their clothes. Some shelters cover mattresses in plastic but others use cloth, which provides a medium for the transmission of vermin. Treating one case of lice is fairly straightforward; dealing with an epidemic in a shelter without adequate laundry, shower, and clothing resources is a problem that requires a highly organized response.3 4F or both lice and scabies the most common treatment is Kwell, an insecticide similar to DDT, which is applied topically and absorbed through the skin. Kwell is the best choice for homeless persons who come to emergency rooms with assorted vermin literally crawling all over them. More commonly, however, homeless persons have only a few body lice and can be treated with pyrethrins, sold under trade names such as A 200 - and Rid. These are preferable to Kwell because they are available over the counter, are safer, and require only a single application. Frequent delousing is itself a health problem. Unlike most people, who might use Kwell once or twice in a lifetime, the homeless get deloused on a regular basis. Reported cases of central nervous system damage, possible seizures, and other severe side effects have been associated with gross misuse of Kwell (e.g., one child drank a whole bottle), but many of the homeless are at risk because they don't wash after 12 hours as instructed. Another danger is created by shelter volunteers and even health professionals who become extremely upset by lice and 4 Health / PAC Bulletin overreact. We've heard of cases where every resident's clothing has been boiled in Kwell and water, although a warm wash in soapy water is just as effective. Some shelter workers have been known to apply triple doses on the theory that " more is bet- ter. " A few have even reported spraying their homeless charges and themselves with R & C, a very toxic poison made for delousing upholstery. Here again, an ounce of prevention is worth a pound of cure: clean, well - fed, well nourished - people living in their own homes just don't face these " medical " problems. The Special Problems of Homeless Youth A recent Congressional study estimates the number of homeless youths to be somewhere between 250,000 and 500,000. Whatever the true figure, a majority are not stereotypical " runaways " who have a home to return to. Most report they were " hated " at home and told to leave. When workers at Covenant House, an emergency shelter for adolescents in New York City, called homes, they found that this assessment of undesirability was generally correct; only 18 percent of the homeless youth seen at Covenant House in 1983 could be discharged to their families. 37 Most homeless youths are from poor, single parent - families. Typically they describe a high incidence of domestic violence. (spouse and child abuse), incest and other sexual and emo- tional abuse, and generally chaotic family conditions. One study of runaways found that half had been in foster care at some time in their lives, and 60 percent reported a parent had been convicted of a crime or drank or took drugs excessively. 3 * Life on the streets means violence and neglect. Children as young as 12 are sexually exploited. Prostitution provides a quick way to make money, which often supports a drug habit. Nurse practitioners and pediatricians treating these youngsters are like brilliant surgeons with no tools. They can only appeal to the child's often minimal sense of self in an ef- fort to redirect behavior, and quickly learn to redefine a " vic- tory " to mean something as basic as keeping a clinic appoint- ment. Frequently clinicians end up treating a trauma or a sex- ually transmitted disease and then releasing the young victim to another day of turning tricks or violent struggle to survive. Even though the obvious futility and waste of a " band - aid " approach has been aired in local, state, and Congressional hearings, and even though many of these children are well known to social service agencies, this tragedy seems only to deepen. Many youngsters will accept humane and supportive long term - residential care, should it exist. In 1985 America, it rarely does. After a childhood he remembers as a series of beatings by a mother who drank a lot, Reggie Brown entered the foster care system at age 13. Within a week of his 18th birthday he was discharged from the last of a series of group homes. All he was given, he said, was " cab fare and directions to the men's shelter. " Soon after he became one of the many youths who make the Times Square area their home. 40) In 1982 823 children were similarly discharged on " their own responsibility " in New York alone, but a recent New York suit brought by the Coalition for the Homeless and the Legal Ac- tion Center for the Homeless has won a court ruling barring the City's Social Service Administration from continuing this practice with no preparation for independent living. The court explicitly defined this preparation to include training by the foster care agency in skills such as apartment finding, budgeting, shopping, and cooking as well as provision of career Anie Q counseling and training in a marketable skill or trade. How this legal victory will affect foster children's lives is yet to be seen. The Gift of Mental Health Wrapped in Red Tape After months of negotiations with city officials, a nurse whom we will call Sarah was able to obtain a grant to set up a mental health service for the homeless women staying in a large municipal shelter. Recognizing that it made little sense to offer mental health services without permanent housing - We " don't want to turn this shelter into a new version of a back ward, " in Sarah's words - she went out to find some. Originally she envisioned hiring a social worker who would help the patients find apartments, but she soon learned that there is no available low cost - housing in the neighborhood. She then discovered that there was only one housing for the home- less advocacy group in her city, and its project had been delayed for more than four years in drawn - out negotiations with the city over construction of a 50 room - Single Room Occupancy (SRO) hotel. During these four years potential competition for the beds had intensified, leaving access for her clients in doubt even if the project were completed. " Then I had the bright idea of teaming up patients so they 41111 John Jenkins Health / PAC Bulletin 25 " Across the country, getting a homeless person who is hav- ing a psychiatric emergency hospitalized is a major problem, " noted a Baltimore advocate for the homeless, " In some states the shelter volunteer must petition the court to obtain an order to hospitalize disturbed persons. " 43 An ie The = Eviction Q could afford shared apartments, " Sarah related, But " I was told this would make the team into a housing agency requiring a special license! " Furthermore, since many of her patients have chronic mental problems, at least some on site - supervision would be required. Unfortunately, the necessary funds were unavailable. Her grant money can only be used to pay the staff to do outreach work. Unable to solve the basic homelessness issue, Sarah retreated to a program to provide " outreach services. " One such service she deemed basic was food preparation, so she pro- posed installing a kitchen in the shelter - only to be told that this was impossible, since her grant was " not a feeding pro- gram but a mental health program. " Today, Sarah's once ambitious program routinely prescribes psychotropic medications, hospitalizes people both voluntarily and against their will (when possible - the local hospital is often short of psychiatric beds and displays a negative attitude toward homeless people) and runs supportive psychotherapy and socialization groups. Even mental health professionals who agree that major changes are needed in the mental health system and are other- wise sympathetic to the plight of the homeless mentally ill generally regard any attempt to help them as an exercise in futility, if not masochism. And mental health professionals who do show a direct interest in the homeless are in the minority. " Washington, D.C. has over 1,000 psychiatrists, " one expert notes, " more per capita than any other city in the country- and almost no mental health services for homeless people. " 4 Working in a mental health services support unit for the homeless, one author of this paper has experienced these prob- lems daily. The conditions would discourage anyone - poor or existent non - heat in winter and no air conditioning - in summer, leaky roofs, lack of water, and blurred job boundaries (the pro- fessional staff recently repainted the office) are only some of the daily reminders that this is not a glamorous career. Many volunteers feel abandoned because essential back - up mental health services are lacking. They frequently become apprentice therapists for clients who would challenge the most seasoned mental health professional; when they attempt to find appropriate mental health services for these clients, they often discover all doors are closed. Even shelters with psychiatric emergencies often have nowhere to turn. Services Are Not Enough If mental or physical health care for the homeless is not to become the most hopeless form of revolving door medicine, other services such as food stamps, income maintenance, veteran's benefits, detoxification programs, counseling and jobs programs, and day care are all crucial- and all currently re- quire innovative and fierce advocacy against overwhelming obstacles. However even comprehensive services must be anchored on the primary need of the homeless: housing. This should be stating the obvious, but unfortunately it isn't. The connection between housing and psycho emotional - well being - , for exam- ple, is too frequently ignored. The former mental patient may require one of three levels of housing: basic emergency shelter, transitional accommoda- tions, or a long term supportive residence. However today's economy and the demolition of federal housing programs have created a deepening crisis in which the development of per- manent housing for the poor cannot keep up with the demand. Anie Q In New York City, the Human Resources Administration and its Department of Housing Preservation and Development have moved 2000 families into permanent housing in the past two years, but " for every two families that the City places in apart- ments, another three enter the system, " in the words of one local official. Few homeless persons " graduate " to permanent housing; the lowered standards of living that characterize temporary shelters are becoming more routine and " acceptable. " But even as shelters evolve from small, makeshift operations staffed by volunteers into large institutions taking on a life of their own, the " shelter " they provide is never truly adequate. " Health workers cannot deal with the medical needs of in- dividual homeless people without first finding them safe, warm lodging, and nutritious food " a report on Washington, D.C.'s Zaccheus Clinic states unequivocally, " This means working closely with shelters, soup kitchens, and other community resources and, in the long run, helping these patients find per- manent lodging and a steady source of food; helping them find work if they can work or get disability or public assistance if they cannot. " " 44 26 Health / PAC Bulletin In the absence of appropriate referrals to acceptable, per- manent housing, even ambitious, well funded - efforts such as those being developed in the Johnson - Pew program resemble battlefield medicine, in which the supply of " wounded " in- evitably rises faster than any treatment system is able to cope. Medical workers say that they can often increase the engage- ment and trust of homeless individuals with numerous con- Se a * ~ Anie Q tacts and the passage of time. However, they invariably add, if they fail to meet more basic needs such as jobs, income, and permanent housing their credibility is inevitably undermined. and the moment in which effective intervention is possible is lost. +5 Programs That Work Even today, some comprehensive programs to deal with " health non -" problems such as nutrition, housing, and income do exist. New York's Henry Street Settlement House, for ex- ample, operates a transitional facility for some 82 homeless families. Each lives in a separate apartment - for the same daily rate the City pays for squalid " welfare hotels. " But unlike the welfare hotels, the Urban Family Center provides a full com- plement of support services: live - in social workers who help families find and secure permanent housing; preschool and school after - tutoring programs; parent counseling; and work education. * " With the city spending 1,500 $ and more a month on a hotel room, we could put the same $ 20,000 a year toward apartments like this, " observed New York City Council President Carol Bellamy. The efforts of Bellamy, a few other politicians, and advocates for the homeless bore some fruit in late September when Mayor Koch reversed his earlier opposition and allot- ted $ 27 million for the rehabilitation of buildings to provide permanent housing for 2000 homeless New Yorkers. The money will go to 24 non profit - groups, who will buy the va- cant city owned - buildings for $ 1 each. Many of the groups will provide a full range of health and other services to the oc- cupants, supported by the same $ 1,500 a month for a family of four now going to the landlords of shabby, vermin - ridden welfare hotels. With and without government support, many community and other non profit - groups across the country have begun to renovate Single Room Occupancy hotels and similar facilities that can meet low income - housing needs. Like the New York program, these projects can be self supporting - once they are established.48 Care and A Caring Society Much as the public health advocates of earlier years in- evitably took up the cry for minimum wages, decent working conditions, public sanitation, and, yes, housing, health pro- fessionals who work with today's homeless must go beyond the comfortable " medical model " and become involved in changing the social conditions that create them. If these con- ditions are not changed, those who work with the homeless can look forward to endless frustrations in planning, organiz- ing, and delivering care. A Medicaid number and even the most sensitive health care simply cannot cope with the sicknesses spreading among those wandering the streets of the richest nation on earth. 'a 1. U.S. Department of Housing and Urban Development (HUD), A Report to the Secretary on the Homeless and Emergency Shelters, May 1984. 2. Hombs, Mary Ellen, and Snyder, Mitch, Homelessness in America: A Forced March to Nowhere, Community for Creative Non Violence - . Washington, D.C., 2nd ed., Sept. 1983. 3. Hopper, Kim, et al., One Year Later (New York: Community Service Society, 1982). 4. Mandell, Jonathan, " There Is No Place Like Home, " New York Daily News magazine, April 21, 1985. 5. Rafferty, Margaret; Hinzpeter, Denise; Calvin, Laurie; and Knox, Margaret, The Shelter Workers Handbook, (New York: Coalition for the Homeless, 1984). 6. Lipton, F.; Micheels, P.; Hinzpeter, D.; and Rafferty, M., " A Study of 50 Homeless Patients in the Bellevue Hospital Medical Emergency Room, " presented at the American Psychiatric Association Annual Convention. 1983. 7. Seiden, Dena, " Diminishing Resources, Critical Choices: Ethics and the Provision of Health Care, " Commonweal, March 9, 1985.8. Kennedy. Louanne, " The Losses in Profits: How Proprietaries Affect Public and Voluntary Hospitals, " Health / PAC Bulletin, Vol. 15, No. 6. 9. Lipton, F., et al., op cit. 10. Wright, James D., et al., Health and Homeless in New York City: Research Report to the Robert Wood Johnson Foundation, Amherst, MA, January. 1985. 11. ibid. 12. Ahlstrom C.H.; Lindelius, Rolf; and Salum, Inna, " Mortality Among Homeless Men, " British Jl. of Addictions, 1975, Vol. 70. 13. Goldfarb, Charles, M.D., " Patients Nobody Wants: Skid Row Alcoholics, " presented at the 1969 Annual Meeting of the American Psychiatric Association. 14. Interview with R.M. Hayes, Counsel, National Coalition for the Homeless, April 1985. 15. Anthony Arce, et al., The Homeless Mentally III: A Task Force Report of the American Psychiatric Association, John Talbott and H. Richard Lamb (eds.), (Washington, DC.: American Psychiatric Association, 1984. 16. Bassok, Ellen L.; Rubin, Lenore; and Lauriat, Alison, " Is Homelessness a Mental Health Problem? " Amer. Jl. of Psychiatry, Vol. 141, No. 12, December 1984.17. New York City Human Resources Administration, Family and Adult Services, " Chronic and Situational Dependency: Long Term Residents in a Shelter for Men, " May 1982. Q. Anie Health / PAC Bulletin 27 18. Shaffer, David, and Caton, Carol, Runaway and Homeless Youth in New York City: A Report to the Ittleson Foundation, January, 1984. 19. Engel, Nancy, and Lau, Sr. Alicia, " Nursing Care for the Adolescent Ur- ban Nomad, " Amer. Jl. of Maternal & Child Nursing, January February / 1983, Vol. 8, No. 1. 20. ibid. 21. Blumenthal, Ralph, " In City Quarters, Parents Struggle to Feed the Youngest Homeless, " New York Times, April 20, 1985. 22. Belmar, Roberto, " Children in Jeopardy. " Dept. of Social Medicine, Montefiore Medical Center, Bronx NY, August 1980. 23. Personal communication, George Rutherford, M.D., NYC Dept. of Health, January 1985. 24. Blumenthal, Ralph, op cit. 25. ibid. 26. Interview with Gretchen Buchenholz, NYC, July 1985. 27. U.S. Dept. of HUD, Report, op cit. 28. Bargman, Eve, " Washington, DC.: The Zaccheus Clinic - A Model of Health Care for the Homeless Persons, " in Health Care of Homeless Peo- ple, Brickner, P.; Scharer, L.; Conanson, B.; Elvy. A. and Savarese, M. (eds.). (New York: Springer, 1984.) 29. Revler, James, M.D., " The Wallace Medical Concern, " P.O. Box 002477. Portland, OR 97202. 30. The Robert Wood Johnson Foundation and the Pew Memorial Trust, Health Care for the Homeless Program, sponsored co - by the U.S. Con- ference of Mayors. More information on this program is available from either foundation. 31. Rafferty, M., et al., op cit. 32. ibid. 33. ibid. 34. ibid. 35. ibid. 36. Engel and Lau, op cit. 37. " Homeless Youth in New York City: Nowhere to Turn. " Citizens Com- mittee for Children of New York, Coalition for the Homeless, and Runaway and Homeless Youth Advocacy Project (New York: September 1983). Shaffer and Caton, op cit. 39. ibid. 40. Rimer, Sara, " From Foster Homes to Life on New York Streets: Three Case Studies in Failure, " New York Times, July 19, 1985. 41. Bargman, op cit. 42. Interview with Baltimore Board Member of the National Coalition for the Homeless at the First Annual Meeting. 43. Suzanne Trazoff, NYC employee, as quoted in Mandell, op cit. 44. Bargman, op cit. 45. Hopper, Kim, and Baxter, Ellen, " Shelter and Housing for the Homeless Mentally III, in Talbott, John, and Lamb, H. Richard. (eds.), The Homeless Mentally III, A Task Force Report --- op cit. 46. Blumenthal, op cit. 47. Interview with John Felice, O.F., Director, St. Francis Residence, NYC, July 1985. * Much of this section is drawn from Rafferty, Margaret, et al., The Shelter Worker's Handbook: A Guide for Identifying and Meeting the Health Needs of Homeless People. New York: National Coalition for the Homeless, October 1984. Copies may be ordered from Coalition for the Homeless, 105 East 22 St., New York, NY 10010 for $ 6. Notes & Comment continued from page 5 physicians and other health providers as well. A second factor in the new dominance of the federal govern- ment is its concentration of power in one place, the Health Care Financing Administration. The impact of this unified federal action is so great that it indirectly dictates hospital and physi- cian conduct for privately insured patients in addition to its direct rate setting for beneficiaries of the federal programs. DRG Medicare reimbursement for hospitals was instituted with almost no consideration of its impact except for its abil- ity to reduce costs, yet state Medicaid programs and some Blue Cross programs have announced plans to adopt a similar system. Federally imposed utilization review has limited joint determination by physicians and patients of what medical care is necessary and appropriate. Preferred Provider Organizations were first introduced by California's Medicaid program as a way to pressure physicians and other health care providers to reduce their charges by giving patients to the lowest bidder- bidder- again with little concern for the effect on the quality of care. Now they are being replicated by employers and insurors all over the country. Recent federal government policies which have radically restructured health care delivery have not been introduced to develop a rational health care system or improve health or ser- vices. Rather, the goverment's sole preoccupation has been limiting costs. Certainly cost is a legitimate concern in health planning; Medicare currently spends $ 77.5 billion a year and 28 Health / PAC Bulletin its outlays are projected to reach $ 120.7 billion by 1990, a 51 percent increase. What the recent history of federal interven- tion demonstrates is that the enormous power of the federal government can restrict access to quality care just as it can pro- mote progressive change. Health care has suffered less from Reagan's attempts to dismantle the social welfare system than any other area. Medicare and Medicaid both have powerful public support. Congress has thus far refused to reduce Medicare benefits or increase patient deductibles and co payments - , and Medicaid benefits for young children and some first time - mothers were expanded in 1984 legislation. Concern with health costs has finally induced Congress to throw off the collar which organized medicine had on legisla- tion affecting physicians - witness the 1984 freeze on Medicare reimbursement for physicians and the penalties authorized against physicians who do not accept Medicare assignments. The shift of physicians to employee status has also lessened the profession's collective support of a fee for service system. Medicare and Medicaid have contributed to the breakdown of a health care delivery system that had lasted 50 years has legitimized the exercise of federal power in health care. It is unlikely that this power will be used for progressive purposes during the Reagan years; the status quo seems the best that is achievable at this time. However as my fellow Health / PAC Board member Hal Strelnick has pointed out, few people would have predicted in 1955, in the midst of the Eisenhower Administration, that Medicare and Medicaid were only ten years off. Progressives in health policy have a responsibility to con- tinue to refine, reshape, and promote our ideas for what a health care system should be, so that the agenda will be ready when the political pendulum once again swings in a more humanistic direction. O AIDS and Health Education by Nicholas Freudenberg The previous Know News column reviewed current scientific opinions on the causes of AIDS and looked at the im- plications of these theories for health education. I suggested that the dominant theoretical model - that a single viral agent (HTLV - III, or LAV) causes AIDS-- AIDS-- leaves several important questions unanswered, and I briefly summarized the major competing theory - that a variety of factors co - must be present as well as an infectious agent. In this col- umn I will explore how AIDS education has been used to advance a reactionary political agenda and propose some steps that public health workers can take to counter this dangerous campaign. In a television interview in July 1985 Dr. James Mason, director of the U.S. Centers for Disease Control, announced that to control AIDS we have to control sex, and CDC's major educational objec- tive will be to change the sexual behavior of groups at risk. As media promotion and public accep- tance of the single viral agent theory have advanced, the content of AIDS education has subtly shifted, providing an ominous portent of what " controlling sex " means. The earlier emphasis was on " safe sex, " e.g., use of condoms, elimination of recreational drugs that affect im- munological functioning, and reduction in the number of partners. Now even some gay organizations argue that for those at risk the only safe sex is no sex. As noted in the previous column, a Cali- fornia health official suggested that anyone who fell within a risk group - or had ever had sex since 1978 with anyone in a risk group should avoid " exchang- ing body fluids " with anyone else. For hundreds of thousands - perhaps mil- lions - of people, this proscription rules out most known forms of sexual activi- ty (including kissing) engaged in with another person. Should gay men and IV drug users fail to heed these messages, more drastic measures are being readied. Federal, state, and local officials have discussed the establishment of quarantine laws to isolate AIDS patients or, in some cases, those alleged to be carriers of AIDS. In Connecticut, state quarantine laws were used to jail a prostitute with AIDS. She was later released, and died of the Know News disease. California recently issued guidelines that make it possible to con- fine a " carrier of AIDS " to his or her home, a hospital, or jail. Several other states are readying similar regulations. The screening test for the presence of antibodies to the HTLV - III virus creates other health education dilemmas. Although the U.S. Food and Drug Ad- ministration licensed the test only to screen blood donated to blood banks, it is being widely used for research and even diagnosis. Fairly strict guidelines for informed consent have been issued but no one routinely monitors compli- ance. Hence tens of thousands of people are being screened with a test of ques- tionable reliability and unknown signifi- cance. Whether the presence of an anti- body to HTVL III - means exposure to the disease, immunity, carrier status, or something else entirely is yet to be deter- mined. To inform people that they tested positive in the absence of such knowl- edge and in the absence of any known treatment is certain to create anxiety or even terror. The likely effect is to in- crease the already high level of fear in at- risk populations without any concomi- tant public health benefits. It also ensures that any sexual activity among risk groups will be fraught with guilt. For health educators to participate in such an exercise raises serious ethical questions. Those who advocate such drastic ac- tion argue that the magnitude of the AIDS epidemic justifies forceful social control measures. Certainly no one can deny the terrible impact of AIDS: in New York City it is now the leading cause of death for males aged 25 to 44. But drastic action is justified only if it is based on sound science and a plausible theory, and even then only if it is effec- tive. When the control measures propos- ed so closely parallel the agenda of rightwing forces in our society, we need to search more carefully for their real motivation. The message that the only safe sex is no sex was around long before the first case of AIDS. It is the Reagan Admin- istration's solution for pregnancy among unwed teenagers and all unwanted preg- nancy as well as for AIDS. The true motivation for this position is political and religious, not scientific. Its pro- ponents seek to impose on all of us the notion that sex is moral only within mar- riage. Some AIDS educators are even promulgating the macabre doctrine that sex equals AIDS and AIDS equals death, an equation infused with the most tor- tured and puritanical images of sexuali- ty. This " educational " effort fits neatly in- to the broad rightwing campaign to roll back the advances of the gay rights and women's movements. Intentionally or not, it is part of the the psychological warfare against gay people. The second most important risk group for AIDS, intravenous drug users, is equally vulnerable to social control and stigmatization. The current request for proposals from the CDC to test drug abusing pregnant women and female partners of male drug abusers and later their infants for HTLV - III raises the specter of massive violations of civil rights. Should mothers or foster parents be informed if their babies are HTLV- III positive? Will HTLV - III negative babies be legally removed from addicted mothers who are positive? The difficul- ty of finding residential treatment facilities for children with AIDS means it is likely that these babies will become pariahs with no place to go. The racist tendency to assume that all black or hispanic women are potential drug abusers or partners of addicts has led some public health officials to propose routine prenatal or even premarital screening for HTLV - III in minority communities. People from Haiti and some African countries have also been designated as groups at risk of AIDS. This on again -, off again - characterization reinforces cur- rent proposals to limit immigration from poor Black and Third World countries; it has certainly resulted in denial of employment to many Haitian refugees in the U.S. Once again, this is a position which resonates with a favorite rightwing theme of a white, heterosexual America besieged by plague infested - " outsiders. " Yet another example of the ideological overtones in the identification of risk groups (and therefore populations in need of education to change their sexual habits) is the current emphasis on re- searching the role of women in AIDS. They constitute less than ten percent of > Health / PAC Bulletin 29 AIDS cases, but scientists around the country are now getting grants to study the prevalence of the HTLV - III virus among addicted women, pregnant women, prostitutes, and those who have sex with men in risk groups. Despite the lack of any firm evidence, researchers seem determined to find a role for the promiscuous woman in the spread of AIDS. When we review the sordid history of using public health and scientific arguments to rationalize repressive policies from the eugenicists who call for forced sterilization to the psycholo- gists who decry social programs for those with (allegedly) inherited (alleged- ly) inferior intelligence, we can appre- ciate the dangers of accepting public policy recommendations without ques- tioning the science, values, and politics on which they are based. Public health workers can make an im- portant contribution to the development of AIDS control and prevention mea- sures that are both effective and humane. First, we must carefully scrutinize the science relating to AIDS. We must insist on research that considers the range of factors that may play a role in causing it, and is accompanied by open dialogue and debate. The comfortable belief that we can leave science to the scientists is dangerous and counterproductive. By educating AIDS activists and organizers in epidemiology, virology, and im- munology, we can help them ask the right questions and make appropriate demands for further research. These ef- forts can alter the priorities and ideological assumptions of AIDS re- searchers just as the occupational and environmental health movements changed some of the priorities of cancer researchers. Second, health workers must defend the accomplishments of the gay move- ment. Gay men and lesbians fought to define their sexuality for themselves. Any reverse of their victories is likely to damage health, not improve it. If the epidemics of AIDS, hepatitis, amebiasis and penicillin - resistant gonorrhea force some elements of the gay community to reconsider the relationship between sex, lifestyle, and health, that examination re - must emerge from a dialogue between gay people, health workers, and scien- tists. Any attempt by the government or health professionals to impose their con- cept of healthy sex onto others is bound to be ideological, and set a dangerous precedent for government use of sex education for repressive ends. History tells us that the manipulation of sexuali- ty for political ends is a cornerstone of fascism. Third, we must join coalitions that seek to address the political dimensions of AIDS. For too long only gay organiza- tions have taken on the politics of AIDS and too often their sole efforts have been to fight for more (albeit needed) re- sources for AIDS without questioning the content of new programs. The con- quest of epidemics has always required political as well as medical mobiliza- tions. To control AIDS we need coali- tions that include gay people, health pro- fessionals, and victims of drug abuse; civil rights and church groups, men and women, blacks and whites. These coali- tions have to raise the scientific, social, political, and ethical questions that must be answered if we are to understand and prevent AIDS without sacrificing new- ly won freedoms. Progressive public health workers and health educators in particular can play a critical role in developing such coalitions. Our failure to do so will ensure that the most reac- tionary elements in our society continue to shape the response to AIDS. O Nick Freudenberg is Director of the Pro- gram in Community Health Education at Hunter College School of Health Science / City University of New York. Bulletin Board A Life As a Midwife Conference Calls The Seattle Midwifery School, whose graduates can sit for the Washington State Midwifery licensing exam, is accepting applications for its September, 1986 class. The applications deadline is February 1, 1986. For fur- ther information, contact the school at 2524 16th Ave. South, Seattle, WA 98144. The Contras'Health Campaign The Nicaraguan contras'strategy of attacking health and other social service facilities and personnel is no sur- prise to readers of the Manual the CIA wrote for them. By the middle of this year they had destroyed 63 health units and $ 2 million worth of medical equipment and killed 70 health workers. These are among the many details which can be found in a new report from the Cen- tral America Health Rights Network. The Report is available free of charge to new subscribers to Links, " a newsletter on health and social change in Central America. " Individual subscriptions are $ 10 from Links, P.O. Box 407, Audubon Station, New York, NY 10032. Cuba welcomes North American participation at its First Cuban Seminar on Biotechnology / Second Cuban Seminar on Interferon, to be held in Havana February 4-23. Abstracts of papers (maximum 200 words) must be submitted by November 30. Costs for the trip, in- cluding roundtrip transportation from Miami, start at $ 790. For further information, write Marazul Tours, Inc., 250 W. 57th St., New York, NY 10107. The North American Nutrition and Preventive Medicine Association will be holding its seventh annual conference April 11-13 in Atlanta, GA. The theme will be " Health by Choice, " and topics will include consumer health advocacy, nutrition and immunity, and aerobic walking. The conference will have sections for both health consumers and health professionals. For further information, contact Bonnie Jarrett at the Association, P.O. Box 592, Colony Square Station, Atlanta, GA. 30361. 30 Health / PAC Bulletin Body English Doze Dose by Arthur A. Levin Although the development of anesthe- sia in the mid 18th - century was a boon for surgeons and those who had to en- dure their efforts, it wasn't until the mid 20th - century that this method of relieving pain became something less than tumultuous. Until then, anesthesia was usually induced with inhaled ether vapor, a slow process which often also induced anxiety, excitement, a struggle, and delirium. Copious bronchial and salivary excretions aroused a feeling of drowning in many people. Pronounced variations in heart rate and spiking blood pressure were not uncommon. Throwing up, a frequent reaction, posed a life- threatening risk of aspiration of vomit and subsequent pulmonary complica- tions. To reduce some of these problems, medical personnel began bringing pa- tients to the operating room heavily pre- medicated with either narcotics or dry- ing agents (anticholinergics) or both. In the past few, decades, all of these hazards have been dramatically reduced. With the introduction of the nonexplo- sive anesthetics halothane, enflurane, and isoflurane, ether has virtually disap- peared from use. Induction of anesthesia is now accomplished quickly with drugs given intravenously, and excess secretion rarely occurs. Intravenous infusions and routine monitoring of cardiac and other vital functions facilitate early warning of problems and appropriate treatment. Despite these advances, however, the usual administration of anesthesia still carries risks of injury and death - some of them entirely avoidable. One possible hazard, for example, is premedication. Although it is also given to induce analgesia, amnesia, and seda- tion, it is applied primarily to reduce anxiety. Yet as far back as 1963 a study of the effects of premedication and / or a reassuring, informative pre operative - visit by the anesthesiologist found that the visit alone did more to reduce anx- iety than the pre - op medication did alone. Another frequently avoidable hazard is the use of general anesthesia. Given a choice between general and regional (in- cluding local) anesthesia, " eighty percent of anesthesiologists surveyed said they would ask for regional anesthesia for their own surgery, " says Dr. Alon P. Winnie, M.D., chief of anesthesiology at the University of Illinois Medical Center. His statement was distributed by the American Society of Anesthesiolo- gists. The following explanations of dif- ferent anesthesia techniques may be a bit technical in spots, but knowing the dis- tinctions made here could be vital if you are facing surgery. It will allow you to discuss the anesthesia knowledgeably with both your surgeon and your anes- thesiologist to make the appropriate choice that minimizes the risk of harm. Local and Regional Anesthetics The advantages of local and regional anesthesia are said to be: * Less disturbance to body functions * A lower incidence of pulmonary complications * Faster recovery - which makes them ideal for ambulatory surgery * Less bleeding They are usable even when general anesthesia is ill advised because of re- cent ingestion of food * Regional anesthesia produces a com- plete sensory block. With general anesthesia the impulses from the surgical invasion still reach the central nervous system, creating a stress response. * They are less costly Regional anesthesia is a broad category which includes surface (topical) infiltration and block anesthesia, spinal anesthesia, and epidural and caudal anesthesia; it can be induced with many " caines, " such as lidocaine, procaine, and tetracaine. Even regional anesthesia has its hazards. Most of them are mild and easi- ly treated, but some are life threatening - . Experts believe that the majority of these are due to human error such as overdose or bad technique. Nonetheless, Emergen- cy equipment and drugs should be on hand to deal with cardiopulmonary emergencies whenever regional anes- thetic is used. Spinal, epidural, and caudal anes- thesia involve somewhat greater risks and demand greater practitioner skill than other regional procedures. Spinal anesthesia often causes delayed prob- lems; nine out of ten people who receive it get a headache within three days (this usually goes away if the victim lies down, and normally disappears entire- ly within a week or two). Urinary reten- tion can also be a problem, since blad- der control is the last function to return after spinal anesthesia. Epidural and caudal anesthesia do not appear to cause delayed problems, but during surgery they can lead to complications ranging from mild to life threatening - . " These are not benign anesthetics, " says one expert about both spinal and epidural. " Considerable skill, ex- perience, judgement, and vigilance are needed. " General anesthesia is defined as a reversible state of unconsciousness pro- duced by anesthetic agents, with loss of sensation over the whole body. It has three components: amnesia with uncon- sciousness, analgesia, and muscle relax- ation. One expert says it should be used for surgery involving infants and young children, extensive or prolonged surgical procedures, surgery for which regional anesthesia is neither practical nor satisfactory, persons with a history of sensitivity to drugs used for regional anesthesia, and where the person having the operation prefers it to regional. Giving general anesthesia involves two main components, induction and main- tenance. All the induction drugs harbor risks as well as positive attributes. Nor- mally at least two are used; the choice depends mainly on the condition of the person, the surgery to be performed, and the experience of the anesthesiologist. One common combination is thiopental and succinylcholine. The method chosen to maintain anes- thesia also depends on the particular per- son and surgery. One text organizes the many combinations possible into five techniques, each of which includes many variations: * Inhalation anesthesia, with the person able to breathe spontaneously. This method uses nitrous oxide, halothane, or another similar gas, and oxygen. * The same as above, except breathing is not spontaneous. Endotracheal in-p Health / PAC Bulletin 31 tubation and controlled ventilation are necessary for persons who are prone or in jack knife - position, and for those have surgery in their chest cavity. * The same as above, with the addition of a neuromuscular blocking agent for muscle relaxation to permit intra- abdominal surgery. With this tech- nique, the patient must be continuous- ly monitored for ventilator failure or a mechanical disconnection, both of which are potentially fatal. e Dissociative anesthesia uses the gas ketamine, but is otherwise the same as the above. Ketamine increases the heart rate, blood pressure, and vas- cular resistance, and relaxes bronchial smooth muscle. It is used primarily for asthmatics and hypovolemic patients, particularly those in shock. * " Balanced anesthesia " uses nitrous ox- ide and oxygen along with a narcotic, a benzodiazepine, and a neuromus- cular blocking agent. Its advantages include its minimal depression of the heart, and only minor effects on the heart's output. One major risk is that use of a narcotic can depress respira- tion after the surgery, necessitating post operative - ventilation. Clearly, although anesthetics put peo- ple to sleep, they are not the stuff that dreams are made on; they should be used with caution, and only when necessary. O Arthur A. Levin is a member of the Health / PAC Board and Director of the Center for Medical Consumers, pub- lisher of the monthly newsletter Healthfacts. The Center maintains a free medical library for the public at 237 Thompson Street (between W. 3rd and W. 4th) in New York City. Call (212) 674-7105 for further information. Health / PAC Health Policy Advisory Center 17 Murray Street New York, New York 10007 2nd Class Postage Paid at New York, N.Y. NOTE TO SUBSCRIBERS: If your mailing label says 8507, your subscription expires with this issue.