IS AIDS different?

• Author: Fernandez, Hermes
• Position: New York - Symposium on Health Care Policy: What Lessons Have We Learned from the AIDS Pandemic?

INTRODUCTION

AIDS is unique, and those who have been exposed to AIDS have been treated in a unique manner. In New York, as in many other jurisdictions, the health care system has engaged AIDS--a contagious disease--in a distinctly non-confrontational manner. The detection of AIDS has rested almost wholly upon voluntary testing, with a series of warnings to the prospective testee that in many ways can be described as encouragement not to be tested.(1) The results of the test are strictly confidential, and, in fact, the testee can choose anonymous testing.(2) There is virtually no contact tracing.(3) Breaches of confidentiality carry criminal penalties and the possibility of civil penalties including professional discipline.(4)

Other communicable diseases are treated quite differently. Sexually transmitted diseases (STDs) and tuberculosis, for example, both involve some form of involuntary testing and reporting, and a tuberculosis diagnosis also triggers contact tracing.(5) Treatment for these diseases also can be mandated.(6)

What accounts for this varying treatment?(7) Is it something in the disease itself or is it simply a reflection of the politics of the times? Certainly, the regulatory structures established for other communicable diseases were developed decades ago, well before the judicial expansion of civil liberties that began in the 1960s.(8) If sexually transmissible diseases first burst upon the scene today, as AIDS did in the 1980s, would the medical/legal response be the same? Could the same sorts of coercive measures enacted at the turn of the twentieth century be enacted at the turn of the twenty-first century?

This Article will examine the sui generis response to AIDS, and compare that response to the public health measures in place for other diseases.(9) The Article also will briefly discuss whether the legal response to AIDS foretells the response that will be adopted as society confronts new diseases, yet undiscovered, or maybe even undeveloped.(10) The Article will first lay out the legal structure facing AIDS, and then the measures in effect for other diseases.(11) The AIDS statute will then be compared with the statutes governing other communicable diseases.(12) The Article will also discuss some of the forces at play at the time the New York AIDS Confidentiality statute was enacted.(13) The Article also will briefly discuss the implications of the current legal approach to AIDS for future epidemics, and, conversely, whether the treatment of other communicable diseases has implications for the future treatment of AIDS.(14) Finally, the Article will suggest that after ten years of medical and legal developments, the statute should be reviewed to determine whether the statutory structure adopted in 1988 befits the situation in 1998.(15)

The New York AIDS Confidentiality Statute

Even before it was identified, AIDS had been regarded as a public health crisis.(16) New York first responded statutorily to the crisis in 1983, with the establishment of the AIDS Institute within the Department of Health.(17) The Institute was charged with coordinating the State's AIDS policies.(18) The Institute was also specifically charged with developing and promoting research into the cause, prevention, treatment and cure of AIDS,(19) and with developing and promoting a public education campaign directed toward high-risk groups.(20) Those two provisions are notable because they demonstrate that even before there was any real understanding of the cause of AIDS, or the method of transmission, New York State had made its official policy, and principal means of checking the epidemic, one of public education.(21) Of further note, the public education was not about the methods of transmission or the means of disease avoidance, rather, the education was to focus on "the treatment and counseling programs and sources of financial assistance available."(22) Thus, even before the disease was understood, the public policy of the State of New York toward the afflicted was one of encouraging those already infected, and those at high risk of infection, to voluntarily come forward for counseling and treatment.(23)

As further encouragement, the legislation specifically stated that personal information uncovered during the course of any scientific investigation or report would be kept confidential.(24) There was no legal reason to enact a separate guarantee of confidentiality, because an individual's medical status was already required to be kept confidential under the Public Health Law.(25) The only reason to enact such a provision was to assuage the concerns of the at-risk population that their privacy would be of the highest concern. By 1983, the public perception of AIDS was that of a homosexual disease.(26) At the same time, the means of transmission were not widely understood.(27) Persons with AIDS were afraid of, and did suffer from, job discrimination, housing discrimination, and loss of employment.(28) There were also reported instances where health care providers refused to treat persons with AIDS.(29)

Through the mid-1980s, knowledge about AIDS increased. The HIV virus was identified as the cause of the disease.(30) The exchange of bodily fluids was conclusively identified as the means of transmission.(31) AZT had been identified as the first promising treatment.(32) Medical authorities agreed that infection could be prevented by the avoidance of high-risk behavior.(33) Effective tests had also been developed for identifying those who had been infected with HIV.(34) By 1988, with the advent of AZT and effective testing, a public imperative existed to cause the at-risk population to be tested.

The State Legislature responded with enactment of what is commonly known as the AIDS Confidentiality Law.(35) The New York law is firmly premised on the belief that the public health interest is best served, at least in the instance of AIDS, by a highly confidential, wholly voluntary system.(36) But more than that, the New York AIDS Confidentiality Law can be regarded as according the protection of individual civil liberties the same level of importance as checking the spread of contagion. As will be seen, the emphasis that this statute places on the protection of civil liberties is unique among public health Laws.(37) Article 27-F is the high water mark of civil liberties as a public health goal.

There are a number of striking features in Article 27-F. First and foremost is the Law 's presumption that voluntary testing is the most effective means of meeting the epidemic.(38) Second, with narrow exception, the Law prohibits involuntary testing.(39) Third, the Law places severe limits on the disclosure of confidential HIV information(40) and rejects routine contact tracing.(41) Lastly, the Law requires a high level of pre-test counseling, including advising the prospective testee of certain information that can only be described as intended to discourage testing.(42) The purpose of this Article is not to call into question those features, only to point out their uniqueness. Certainly the AIDS Confidentiality Law , like any product of the legislative system, reflects the give and take of the political process, and a balancing of interests. Here, that balance was struck in a manner highly favorable to the individual. In other matters of public health, the balance has always been in favor of public protection.(43)

As any Lawyer knows, one of the principle questions of Law is where to place the burden of risk. The New York AIDS Law attempts to balance the risk of infection against the risk of discrimination.(44) The AIDS Law places the burden of avoiding infection upon the uninfected.(45) The uninfected are charged with their own safety.(46) In order to avoid infection, the uninfected are called upon to avoid unsafe practices and to engage in universal precautions.(47) The infected, except in the most extreme circumstances, are permitted to keep their health status confidential.(48) The statute places no requirements upon the infected. By establishing strict confidentiality, the Law hopes to coax those infected, or at the risk of infection, into determining their health status.(49) Once tested, they are encouraged to refrain from unsafe practices, and further encouraged to inform their sexual partners of their health status, but there is little force behind those suggestions.(50) This is intentional. By placing the choice of disclosure with the infected, the New York law hopes to draw the infected into the health care system.(51) Once in the health care system, the New York Law hopes that the infected will change their behavior.(52) In fact, they are encouraged to do so.(53) But they no longer bear the risk. If the infected individual engages in unsafe sex, or shares needles, it is the uninfected individual at risk.

The New York Law , however, cannot be condemned for placing the risk on the uninfected. The theory behind the Law as stated explicitly in the Statement of Legislative Intent, is that the infected will only come forward if assured of confidentiality.(54) The Law respects the demand for confidentiality in order to encourage the infected and those at risk to engage the health system.(55) Hand in hand with confidentiality, the Law seeks to assure the at-risk groups that they will be protected against discrimination.(56)

There are three elements to the protections provided by the legislature: voluntary testing,(57) limitations on disclosure,(58) and penalties for violations.(59) As to the first prong, the Law goes to great lengths to ensure that testing is voluntary. Before a test may be administered, the Law requires that the testee understand the test, and be forewarned about the chances of discrimination if the testee's HIV status is disclosed.(60) In effect, the Law requires the health care worker to ask the prospective testee: "Are you sure you want to do this?" Before the prospective testee may answer the...