Testimony Of Robert Perry On Behalf of The New York Civil Liberties Union Before The Assembly Standing Committee On Health And the Assembly Standing Committee On Codes Concerning the Model State Emergency Health Powers Act. My name is Robert Perry. I am legislative counsel with the New York Civil Liberties Union. I submit this testimony to address the Model State Emergency Health Powers Act. Since the events of September 11, 2001, the federal government and many state governments have acted quickly and boldly - some might say, precipitously - in enacting legislation to address the dangers posed by acts of terrorism. The Model Act Emergency Health Powers Act has been proposed, at least in part, with the objective of preventing and responding to acts of bioterrorism. It is a difficult endeavor to anticipate the circumstances that may arise in a state of emergency and then to determine the appropriate response of the government and judiciary. We have concerns that in attempting to anticipate the public health needs that could arise in various emergency scenarios, the drafters of the Act have not fully anticipated the ways in which the Act would empower the state to violate fundamental rights and liberties. Without explicit protections for these rights and liberties, the proposed legislation may undermine the public's trust in government, at a time when this trust would be essential to the government's functioning. The Act is the product of an effort to adapt a public health model designed to manage disease for the purposes of responding to acts of bioterrorism. In important respects, the Act does not "fit" these objectives well. In many of its provisions the Act relies upon coercive public-health interventions. And the checks and balances that must attach to such extraordinary government power are insufficient. New York law gives important recognition to and protection of the individual's civil rights and civil liberties - privacy, due process, equal protection. As regards these rights and protections, we find the Act not forward looking, but anachronistic. Government surely has a great responsibility to prevent and respond to incidents of bioterrorism. In contemplating this responsibility, however, we should not lose sight of the historical fact that government, acting in the name of public safety, has demonstrated bad judgment, and worse, using state police powers in a discriminatory manner to suspend freedoms based upon race or national origin. It is with this concern that we address certain specific provisions in the Act. We do so with the hope and expectation that in deliberating upon the Model State Emergency Health Powers Act, the Legislature will strike a more appropriate balance between the interests of the state and the interests of the individual. The Act defines "public health emergency" in a manner that is overly broad, and fails to clarify sufficiently the circumstances that would justify the declaration of such an emergency Section 104(m) of the Act defines "public health emergency" as the "occurrence or imminent threat of an illness or health condition" 1) that is believed to be caused by bioterrorism, or a "novel or previously controlled or eradicated infectious agent or biological toxin" and 2) that poses a "high probability" of a "large number" of fatalities or incidents of long term disability or "poses a significant risk of substantial future harm to a large number of people in the affected population." This definition would encompass public health dangers, including "novel" diseases that have little to do with bioterrorism, which, according to the Preamble of the Act, is the danger the bill seeks to address. What's more, an emergency response could be precipitated by the occurrence of infectious disease that is not highly transmissible. We note, for example, that a disease may be contagious, but may not pose an imminent threat to the general public because the disease is transmitted through the blood or other means, rather than through the air. Nevertheless under the Act's definition of "novel" disease, infectious diseases such as HIV, AIDS, E. coli, or even Lyme disease could trigger emergency measures that not only lack justification, but may well be counterproductive. New York public health regulations direct physicians and health officers to isolate an individual who is infected with any one of 53 "communicable diseases." These lists are not necessarily exclusive; however, in the past isolation and quarantine laws have been applied against endemic, highly contagious illnesses, such as smallpox and tuberculosis. Whether such measures would, or should, be permitted in response to other dangerous diseases is the subject of considerable debate. The Act in effect sidesteps this debate. The NYCLU recommends that the definition of public health emergency be drawn more narrowly, so as to include only those diseases that pose a substantial risk of exposure, considered in light of the means of transmission. Otherwise, the drafters' good intentions notwithstanding, there is a real danger the emergency powers granted to the state in the Act may be used, not in the public good, but to coerce and punish the most vulnerable among us. The Act fails to include necessary checks on the state's exercise of emergency powers. Declaration of Public Health Emergency Section 401 of the Act grants the governor unilateral authority to declare a public health emergency. The state legislature may, by a majority vote, overturn the governor's declaration of emergency upon a finding that the occurrence giving rise to the public health emergency no longer poses a substantial risk of death or disability in the affected population. (Section 405(c)). This provision appears to violate the state constitution, which explicitly grants to the legislature the power to provide for the continuity of governmental operations in periods of emergency.5 Even assuming, however, this grant of authority to the governor is constitutional, the Act provides insufficient checks and balances when that authority is invoked. The emergency powers granted in a public health emergency are truly extraordinary - including forced testing, treatment, and quarantine; and the suspension of state rules and regulations. The Act should, therefore, provide that for each state action taken there should be 1) a clearly articulated standard that requires a demonstration that the action is necessary to prevent or respond to the public health emergency; and 2) sufficient judicial review to afford individuals the right and opportunity - including the right to counsel - to challenge in an expeditious manner the unwarranted exercise of emergency powers. Executive authority during a public health emergency Upon declaring a public health emergency, the Act gives the governor authority, under Section 403(a), et seq., to suspend the provisions of any "regulatory statute" prescribing procedures for conducing business, as well as the rules and regulations of any state agency if they would "prevent, hinder or delay" necessary action in responding to the emergency. Under this grant of authority the governor could summarily override any rule or regulation - privacy protections, the Freedom of Information Law, arrest procedures, incarceration standards. Perhaps, most notably, the provision that permits the government to suspend procedures for conducting state business may well include suspension of the judiciary and the state legislature. Although extraordinary measures may be required during a public health emergency, the state must balance the state's interest in protecting public health against the possible infringement of individual rights and liberties. Particularly as regards subjecting an individual to state-mandated medical procedures testing, a bedrock principle of constitutional law holds that the government must employ the least intrusive means necessary. As discussed below, the Act fails to address, or addresses insufficiently, the requirement that the state's interest must be balanced against the interests of the individual. The governor's nearly unilateral authority to assume broad power over medical decision-making is ripe for abuse. We find this extraordinary deference to the state regarding the control of one's person fails to provide even minimally adequate protection of civil rights and civil liberties. Special powers granted the state for "protection of persons" are overly broad, and fail to provide procedural safeguards against violation of basic civil liberties Mandatory medical examination, testing, treatment, and vaccination Under Section 601 of the Act the state public health authority is charged with using "every available means" to prevent the spread of infectious disease and to ensure all cases are subject to "proper control and treatment" during a public health emergency. Pursuant to this directive the state public health authority may perform medical examinations, tests, vaccination and treatment for infectious diseases. (Sections 602, 603) That these medical procedures are compulsory, however, is made clear by the consequences of refusing them: isolation or quarantine. What's more, the Act does not provide for judicial review of these compulsory medical procedures. Notwithstanding the government's interest in responding to an act of bioterrorism or attempting to prevent the widespread transmission of a contagious disease, this interest should not presumptively override the individual's right to refuse medical treatment. A person may have an interest in refusing treatment based upon religious beliefs or because of a susceptibility to side effects. These reasons may be as, or more, compelling than the state's interest in forcing medical testing or treatment. The proper balancing of these interests must respect the individual's right to refuse medical treatment or vaccination. At a minimum the Act should incorporate judicial review when an individual has refused medical treatment or testing. Such refusal would not be overridden by a court absent compelling evidence the medical intervention was necessary to protect the lives of others. Isolation and quarantine Section 602 of the Act provides that where a public health authority is uncertain as to whether a person who refuses to undergo medical examination and/or testing may have been exposed to an infectious disease or otherwise poses a danger to public health, the state public health authority may subject the individual to isolation or quarantine. Section 603 provides that a person who refuses vaccination or medical treatment for reasons of "health, religion or conscience" may also be isolated or quarantined. Public health officials may undertake the "temporary" isolation and quarantine of persons pursuant merely to a written directive if delay is deemed to jeopardize the officials' ability to "limit the transmission of a contagious or possibly contagious disease." (Section 605 (a)(1)) But this procedure fails to incorporate the procedural protections current law requires when the state seeks to subject a person to isolation or quarantine. New York's Public Health Law states that when seeking to enforce a quarantine, health officials must perform investigations, file complaints with a magistrate, and provide "due notice and hearing." Public health officials may, however, choose to seek isolation or quarantine of an individual with notice (Section 605(b)), in which case the court may grant such an order if by a preponderance of the evidence such measures are "reasonably necessary" to prevent or limit transmission of a contagious disease. (Section 605(b)(5)) However, current law requires the state to make a showing of "clear and convincing" evidence before an individual can be detained on the grounds he has a communicable disease. Once again, we see in the Act a lowering of the evidentiary burden required to justify the state's isolation of a person against his will due because he may carry an infectious disease. It is also possible that all judicial review, including the right under the state constitution to file a habeus corpus petition, may become illusory in the event the governor suspends the operation of the courts pursuant to a declaration of emergency under the Act. In this regard, the proposal in Section 202 that provides for the possible appointment of "emergency judges" is particularly alarming. The lack of sufficient judicial review and oversight regarding medical treatment, testing, isolation and quarantine constitutes a fundamental flaw in the Act. In light of the sweeping emergency powers the Act grants to the state public health authority, we consider this flaw to be fatal. The Act requires health care providers and pharmacists to report extensive personal health information to public health authorities without meaningful limits on disclosure or other privacy protections Section 301 of the Act requires health care providers, including laboratories, to report to public health officials all cases of illness that may be attributable to an act of bioterrorism. This reporting requirement extends to "novel" infectious agents that may pose a substantial risk of death or disability, as well as any health condition identified by the public health authority. This same section requires pharmacists to report extensive information, including highly personal information, regarding prescriptions - including unusual prescriptions, unusual trends in pharmacy visits, unusual or increased prescription rates, and prescriptions for a disease that is "relatively uncommon." This reporting scheme would give the public health authority a vast amount of highly sensitive personal information - for example, the names of persons who obtain antibiotics that indicate a certain type of disease, or the names of persons with a "relatively uncommon" disease that pose no risk of a public health emergency. It is appropriate that there be systems and procedures in place that would provide information regarding potential public health threats. This system, however, can and should be designed to capture information without personal identifiers, absent a showing the state has an overriding interest in breaching the privacy interest a person would otherwise have a right to expect regarding his purchase of prescription medication. Professor Lawrence O. Gostin, one of the drafters of this Act, is also the author of a widely respected Model State Information Privacy Act, which provides sound principles and guidelines for balancing the individual's privacy interests against the state's need to know. We recommend that legislators incorporate these principles and guidelines into the Act. -------------------------------------------------------------------------------- In closing, I want to make clear that my testimony and the accompanying written statement are not intended as a complete or exhaustive analysis of the Model State Emergency Health Powers Act. I have attempted to identify the NYCLU's concerns regarding certain major provisions in the Act. We appreciate the opportunity to express these views before you, and we would welcome the opportunity to elaborate upon our analysis as the Legislature considers this important legislative initiative. Thank you.