AIDS as a chronic illness: a cautionary tale for the end of the twentieth century.

• Author: Fentiman, Linda C.
• Position: Symposium on Health Care Policy: What Lessons Have We Learned from the AIDS Pandemic?

INTRODUCTION

Forecasting is always a risky business, particularly at the beginning of the year. Nonetheless I predict that 1998 will be the year that AIDS becomes a mainstream disease, no more likely to receive special legal solicitude or extra government funding than other chronic diseases which afflict a wide spectrum of American society. AIDS is ready to come of age and lose its status as a specialty disease, due to the confluence of four major phenomena. These are: (1) significant clinical innovations in AIDS treatment,(1) (2) a shift in the demographics of persons living with AIDS and HIV,(2) (3) a reconfigured and refinanced health care delivery systems,(3) and (4) new legal thinking about people with disabilities.(4) Some AIDS advocates themselves are beginning to reassess the desirability of "AIDS exceptionalism," the notion that because the diagnosis of HIV is both clinically devastating and socially stigmatizing, HIV and AIDS require special status and special resources.(5) In addition, public health specialists and some AIDS advocacy groups, including the Gay Men's Health Crisis in New York, support the idea of mandatory reporting of HIV test results to state health departments.(6) Mandatory reporting permits the collection of more accurate epidemiological data on the incidence of HIV infection, as well as AIDS, now that HIV infection itself is recognized as a chronic health condition necessitating medical intervention.(7) This new openness to data collection reflects a growing consensus that HIV and AIDS are less stigmatizing than they once were, as more and more Americans' lives are touched by the disease. At the same time, the urgent need for more accurate information for formulating public health policy is seen by some to outweigh the infringement of individual privacy rights and the potential deterrent effect on those seeking HIV and AIDS treatment that have traditionally been grounds for opposing mandatory HIV reporting, particularly if names are attached to positive test results.(8)

In examining the demise of AIDS as sui generis, it is necessary to understand the impact of converging medical, financial, and sociopolitical forces over the last fifteen years. During that time AIDS has evolved from a swiftly fatal illness whose etiology was unknown, to a well-studied, treatable chronic disease where death can frequently be staved off for a lengthy time, although not forestalled altogether.(9) AIDS is thus similar to many other chronic diseases for which a remarkable series of genetic, medical, and pharmaceutical advances now hold out the potential for control, if not cure.(10)

With AIDS, substantial treatment breakthroughs have occurred in the year and a half since the 1996 International Conference on AIDS in Vancouver.(11) Thousands of HIV-positive and AIDS patients across the United States have embarked upon new treatment regimens, taking protease inhibitors daily along with other drugs.(12) In many cases, these individuals have experienced significant remission in their disease.(13) These new "cocktails" are so successful for many people that in 1996, for the first time since the AIDS epidemic began, the number of deaths nationwide due to AIDS fell compared to the year before.(14) The trend has continued in 1997, with data from New York City showing that the death toll from AIDS decreased by forty-eight percent.(15)

Dramatic clinical breakthroughs have also changed the standard of care and quality of life for other chronic disease sufferers. The nicotine patch has helped smokers withdraw from their tobacco addiction, thus halting the onslaught of emphysema, cancer, and cardiovascular disease.(16) Psychotropic drugs have shortened hospital stays and liberated many mentally ill people from debilitating depression, schizophrenia, and bipolar disorders.(17) Similarly, pancreatic transplants (including the Islets of Langerhans, the source of insulin) are poised to radically alter the treatment of diabetes.(18)

During this same time period the landscape of American health care has changed dramatically. In the early 1980s, health care in the United States was largely provided within a fee-for-service system, in which eighty percent of Americans under age sixty-five had private health insurance, primarily through employment, with relatively comprehensive coverage.(19) Today, managed care is the predominant form of health care delivery in the United States.(20) Managed care relies on new organizational delivery structures, both corporate and contractual, utilization review processes, and financial incentives to provide less care, in order to contain costs and to avoid medically unnecessary and potentially dangerous treatment.(21) At the same time, slightly more than half of all Americans receive health care coverage through an employer who is self-insured.(22) Because of the Employee Retirement Income Security Act of 1974(23) (ERISA) preemption by these employee benefit health plans are not governed by state laws providing relief when insurance coverage is "unfairly" denied,(24) thus leaving many employees and their families remediless when a plan will not cover arguable medically necessary care.

Federal efforts to protect people from the most Draconian aspects of health insurance have met with limited success, and are largely incremental in nature. They include the Health Insurance Portability and Accountability Act of 1996 (HIPAA),(25) which was designed to limit the impact of preexisting conditions on access to insurance, and the Mental Health Parity Act of 1996,(26) which requires that when employee benefit plans offer coverage for both physical and mental illnesses, the total dollar value of the coverage must be the same, unless the employer demonstrates financial hardship.(27) There are millions of Americans who are either forced to stay in a job they don't want solely because of its health insurance coverage or who lack access to needed medical services because they happen to have the wrong disease. Nearly forty-two million Americans lack any health care insurance, even the government financed insurances of Medicare and Medicaid.(28) In New York City, twenty percent of the population under age 65 is uninsured.(29)

The result of these monumental shifts in the structure and financing of health care delivery is that at the very time that medical innovations have made possible significant improvements in the quality and quantity of life for people with chronic illnesses, those who are responsible for paying for Americans' health care, in government and the private sector, seem to have finally said "Enough! We must cut costs, and cut them dramatically, and the simplest, most direct way of cutting costs is to deny coverage for certain kinds of treatments and certain kinds of illnesses." People with HIV and AIDS are among those who are struggling, often unsuccessfully, for access to medically necessary treatment, but they are no longer alone. Millions of other Americans living with chronic disease face similar problems as they seek medical treatment that is effective, multi-faceted, and expensive in a health care system increasingly bent on controlling both the costs the structures of health care delivery. We thus stand at the threshold of a critical question: What lessons does the AIDS pandemic provide for American health care in general?

1. LESSON #1: PREVENTION WORKS BEST

   It is always cheaper to prevent illness than to treat it.(30) AIDS, along with many other illnesses linked to human behavior, exemplifies the limitations of American public health policy as it is directed at chronic disease reduction. Government and private payers spend very little on cost-effective preventive public health strategies.(31) State health departments spend only three percent of their budgets on prevention and less than one percent of government funding supports public health initiatives.(32) Although approximately $425 billion was spent in 1994 to treat the six major chronic diseases (heart disease, cancer, stroke, diabetes, chronic obstructive pulmonary disease, and chronic liver disease), less than one percent of that amount ($287 million) was spent on prevention efforts.(33) Many health care insurers and other payers do not pay for preventive health care (well-baby check-ups, mammographies, etc.), although this may change as managed care, which has marketed preventive care as one of its hallmarks, gains greater prevalence in American health care delivery.(34) In 1993, Drs. Michael McGinnis and William Foege estimated that approximately one half of all deaths in the United States could be forestalled by prophylactic health care measures, including changes in sexual and driving behavior, food and alcohol consumption, and the use of tobacco and other drugs.(35) For example, we know that more than forty percent of high school students, both boys and girls, use cigarettes and other tobacco products, and that eighty-five percent of current adult smokers began before the age of 18.(36) In forty years, many of these students will become sufferers from cancer, emphysema, and heart disease. Similarly, McGinnis and Foege suggested that as many as 300,000 deaths annually could be prevented if people decreased their consumption of calories, particularly animal fat, and increased their level of exercise, thus reducing their risk of developing diabetes and heart disease.(37)

   With AIDS, four effective prevention strategies have been identified: counseling individuals to change their sexual and other high risk behaviors, explicit sex education programs, condom distribution, and the provision of clean needles to intravenous drug users.(38) Public and private health policymakers have frequently resisted the implementation of these strategies for moral, fiscal, or political reasons.(39) Similar short-sightedness characterizes most states' regulation of hypodermic syringes, as they severely limit access to syringes in...