Toward a New Health Care System THE CIVIL LIBERTIES ISSUES An ACLU Public Policy Report Fe

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Toward a New Health Care System THE CIVIL LIBERTIES ISSUES An ACLU Public Policy Report February 1994 AMERICAN CIVIL LIBERTIES UNION 132 West 43rd Street New York, NY 10036 (212)944-9800 122 Maryland Avenue, N.E. Washington, DC 20002 (202)544-1681 Nadine Strossen, President Ira Glasser, Executive Director Laura Murphy Lee, Director, Washington Office Kenneth B. Clark Chair, National Advisory Council Copies of Toward a New Health Care System: The Civil Liberties Issues are available for $5.00 each. Send check/money order to: ACLU Dept. L P.O. Box 794 Medford, NY 11763 Copyright 1994 American Civil Liberties Union All Rights Reserved. ISBN 0-914031-24-4 The American Civil Liberties Union is a nationwide, nonpartisan organization of 275,000 members dedicated to preserving and defending the principles set forth in the Bill of Rights. THE HEALTH CARE REFORM BILL OF RIGHTS ARTICLE I > EQUAL PROTECTION Universal Coverage > All persons residing in the United States shall have the right to receive adequate, accessible and affordable health care services throughout their lives, without interruption. Health Care Benefits > An adequate health care system is one that guarantees a comprehensive package of health care benefits consonant with an individual's basic health needs. The package must include comprehensive preventive services, reproductive services and services for individuals with disabilities. Financing > The costs of financing the health care system shall be distributed equitably, taking account of differences in ability to pay. All poor and nearly poor persons shall be eligible for subsidies and cost reductions, regardless of the source of their income. Remedies for Discrimination > The reformed health care system shall prohibit all forms of invidious discrimination in the delivery of health care, and shall provide remedies for violations thereof. ARTICLE II > PERSONAL PRIVACY Personal Autonomy > The health care system shall respect a person's right to autonomy in decisions concerning medical treatment, including matters of reproductive choice. Privacy of Medical Information > Access to and disclosure of individually identifiable health information shall be strictly limited; no disclosure shall be permitted without an individual's uncoerced, informed consent. All individuals shall have a right o f access to their own records, including the right to copy and correct any and all information contained therein. National Health Card > Health care reform must not lead, directly or indirectly, to the establishment of a national identity card or any other card that provides the basis for discrimination, or that undermines the privacy of personal information. ARTICLE III > DUE PROCESS OF LAW Consumer Information > All persons shall have the right to receive information about their health care rights, options and responsibilities that is thorough, understandable, accessible and timely. Access to Justice > All persons shall have the right to obtain redress for violations of their rights in the health care system. Procedures for enforcing these rights shall be designed to yield fair and accurate results in a timely fashion. Government Enforcement Programs > The government shall afford all persons due process in any civil or criminal proceeding to enforce responsibilities under health care reform. ARTICLE IV > FREEDOM OF RELIGION AND SPEECH Right to Opt Out > Individuals whose moral convictions or religious beliefs forbid them from accepting medical treatment shall not be compelled to participate in the health care system. Conscience Clause > No individual health care provider shall be compelled to perform medical procedures that violate her personal religious beliefs or moral convictions. Freedom of Speech > No health care provider shall be excluded from participating in the health care system based upon her political beliefs, nor shall any restriction of her free speech rights be imposed as a condition for participation. TABLE OF CONTENTS HEALTH CARE REFORM BILL OF RIGHTS INTRODUCTION I. EQUAL PROTECTION INTRODUCTION A. UNIVERSAL COVERAGE 1. Enrollment (non-citizens, prisoners, Native Americans) 2. Accessibility and Affordability (accessibility, affordability, enabling services) B. HEALTH CARE BENEFITS 1. Comprehensive Benefit Package (mandatory provision of the comprehensive benefit package, medical necessity or appropriateness, preventive services, women's health, services for individuals with disabilities) 2. Supplemental Benefit Programs (home and community-based services for individuals with disabilities, Medicaid) C. FINANCING HEALTH CARE REFORM D. TRANSITIONAL INSURANCE REFORM E. REMEDIES FOR DISCRIMINATION 1. General Requirements (covered entities, prohibited discrimination, standard for discrimination, affirmative action, enforcement provisions, applicability of existing anti-discrimination laws) 2. Alliance Boundaries II. PERSONAL PRIVACY INTRODUCTION A. PRIVACY OF MEDICAL INFORMATION 1. Medical Records Confidentiality 2. National Identifier/Social Security Number 3. Financing and Intra-Family Privacy B. NATIONAL HEALTH CARD (discrimination, national identity card, privacy) III. DUE PROCESS INTRODUCTION A. CONSUMER INFORMATION (selection of health plan, health plan information for enrollees, applications for premium discounts and reduced cost-sharing, rights of veterans, Native Americans and members of military families) B. ACCESS TO JUSTICE 1. Substantive Remedies for Enforcing Rights (claims for payment or provision of benefits, enforcement of rights against states and alliances, enforcement of rights against health plans, enforcement of rights against the federal government, declaratory judgments) 2. Fair Administrative Procedures (health plan claims procedure, miscellaneous remedial provisions) 3. Judicial Review 4. Attorneys' Fees 5. Medical Malpractice Reform (overbroad definition of medical malpractice claim, authorization for more restrictive state laws, mandatory alternative dispute resolution, certificate of merit requirement) C. GOVERNMENT ENFORCEMENT PROGRAMS 1. Civil Enforcement Measures (civil monetary penalties, disqualifications, collection practices, misdirected sanctions) 2. Federal Criminal Enforcement (creation of new federal crimes, expansion of criminal forfeiture) IV. FIRST AMENDMENT FREEDOMS INTRODUCTION A. FREEDOM OF RELIGION (the right to opt out of the health care system, conscience clause) B. FREEDOM OF SPEECH (marketing practices, statutory protections for speech rights) INTRODUCTION The United States confronts a crisis in health care. Our current system denies health care to millions of people, provides inadequate care to millions more and threatens untold numbers of others with loss of health insurance coverage due to employment, domestic or other life changes. Our government is, therefore, considering comprehensive reform. Even though the United States Constitution, as currently understood, does not guarantee a right to adequate health care, government reform of health care implicates an individual's constitutional rights to life, liberty and property at every turn. Health care reform can strengthen our civil liberties. By correcting the deficiencies of the current system, the government's reform effort offers prospects for improved protection of individual rights, increased personal autonomy and greater equality o f opportunity. If not properly designed, however, health care reform could pose many threats to due process, privacy and equal protection rights, as well as to First Amendment freedoms. The American Civil Liberties Union (ACLU) believes that once the government undertakes to provide a system of health care, which is recognized the world over as a basic necessity of life, the Constitution requires that all persons be given fair and equitable access to adequate care. Therefore, we support and call for health care reform legislation that advances civil liberties and civil rights. The ACLU intends to remain an active participant in the debate surrounding health care, sensitizing the public and Congress to the relevant civil liberties issues. Congress is presently considering several legislative proposals for health care reform. These proposals range from the creation of a national, single-payer system, to various forms of "managed competition," to modest health insurance market reform. Each proposal raises different, though related, civil liberties concerns. This report focuses solely on the Health Security Act, S. 1757 and H.R. 3600, the Clinton Administration's health reform plan. Under the President's proposal, the country would be divided into regional "health alliances," one or more in each state. An alliance would negotiate health insurance premiums with a variety of "health plans," each of which would be required to offer a "comprehensive benefit package" of services. A range of health plans, including both managed care and fee-for-service plans, would be available in each alliance. Once a year, a family would choose a health plan from among those offered in its vicinity. Large corporations could continue to offer their own health plans to their employees, so long as those plans included the comprehensive benefit package. The military, the Department of Veterans Affairs and the Indian Health Service would also continue t o offer separate health programs. All employers would be required to contribute to their employees' health care costs. In general, employers would have to pay 80 percent of the cost of an average priced health plan, while employees would be responsible for the remaining cost of the premium for the plan they select. The federal government would help subsidize the cost of coverage for small employers, low-income individuals and families and recipients of Aid to Families with Dependent Children (AFDC) or Supplemental Security Income (SSI). The ACLU describes herein those aspects of the President's program that would provide greater protections for the rights of people in this country, and those aspects that give rise to civil liberties concerns. Ours is not an exhaustive study of the Health Security Act, a proposal of great scope and complexity that runs to 1,364 pages, includes 11 titles and has well over 500 sections. Rather, in the course of our analysis we have sought to illuminate the major civil liberties principles that are at stake in the health care debate, and that any reformed health care system must respect. This report, prepared by the ACLU's national offices in New York and Washington, D.C., is divided into four sections. Each section corresponds to one of the major civil liberties principles implicated by health care reform: equal protection, personal privacy, due process of law, and the First Amendment freedoms of religion and speech. I. EQUAL PROTECTION One of the central constitutional issues raised by health care reform is that of equal protection. Equal protection concerns arise whenever the government provides services or benefits to some of its constituents to the exclusion of others. Where the government undertakes to provide universal and comprehensive health care, it is required to implement that health system consistent with equal protection principles. In general, equal protection requires that the government treat people equitably: If people are similarly situated, the government should treat them the same; if their circumstances differ in relevant respects, the government may need to address their situations differently in order to yield comparable treatment. In health care reform, equal protection concerns are raised by the issues of universal coverage, comprehensive benefits, and financing, among others. While in many respects, the Health Security Act would provide far more equitable treatment than our present health care system, the proposed legislation nevertheless creates some sharp inequities that must be addressed. A. UNIVERSAL COVERAGE The Health Security Act identifies universal coverage as one of the cornerstones of a reformed health care system: "Health insurance and high quality health care should be secure, uninterrupted, and affordable for all individuals in the United States." Section 2(2)(A). The very first part of the first subtitle of the Act's first title is headed "Universal Coverage." The basic point of universal coverage is to provide quality health care to all. However, this principle is not satisfied simply by ensuring that all individuals are enrolled in a health care program. True universal coverage requires that health service s be accessible and affordable. The Health Security Act goes far toward satisfying the principle of universal coverage. Nevertheless, some groups -- notably many non-citizens and prisoners -- would remain outside of, and underserved by, the proposed health care system. Moreover, serious questions arise as to whether the Act would ensure meaningful access to health services in underserved communities, and whether the cost of care under the plan would prevent many poor people from obtaining necessary treatment. 1. Enrollment Under the Health Security Act, virtually all people in the United States would be enrolled in health plans offering a comprehensive package of benefits. The Act would extend coverage to the vast majority of the 37 million people who are currently uninsured, including many of the poor and the near poor. In addition, by eliminating waiting periods and coverage restrictions based on pre-existing conditions, the Act would ensure that most people remain covered throughout their lives, without risking the loss of health services by virtue of employment, domestic or other changes in their lives. The ACLU supports these expansions of health care coverage as meaningful progress toward guaranteeing access to adequate health care for all persons in the United States. Unfortunately, the Health Security Act unjustifiably excludes several groups from the promise of universal coverage, in particular certain non-citizens and prisoners. Non-citizens > The Health Security Act does not limit its coverage to U.S. citizens, but it does exclude a significant portion of the immigrant community. Under the Act, only long-term non-immigrants, lawful permanent residents, and certain categories o f aliens permanently residing in the U.S. under color of law are eligible to enroll in health plans. Section 1001(c)(2) & (3). Excluded from coverage are all undocumented persons (including children and pregnant women), plus many aliens permanently residing in the U.S. under color of law. By excluding such individuals, the Act not only fails to achieve truly "universal" coverage but actually takes a significant step backwards. Many of these individuals currently receive health coverage through private insurance, employer plans or existing state and federal health programs. The Clinton proposal would relegate these individuals to emergency hospital services and health services from a limited number of "qualified community health groups," see sections 3421-29. Prisoners > Prisoners are also excluded from the health care benefits conferred by the Health Security Act. Section 1001(e) specifically provides that prisoners are entitled only to the "health care services provided by the authority responsible for the prisoner," and not to the comprehensive benefit package available to all eligible individuals through enrollment in health plans. In the ACLU's view, the comprehensive benefit package (discussed below) defines a floor for adequate health services that should be provided to all. In the ACLU's view, the Act's exclusion of aliens and incarcerated prisoners is inequitable and inconsistent with the principle of comprehensive care that informs the President's proposal. As public health specialists recognize, excluding any group from coverage is not sound medical policy and will put all of us at greater risk of contracting contagious diseases. Furthermore, one of the basic premises of the Health Security Act is that the overall cost of health care can be sharply reduced by encouraging people to seek clinical preventive services regularly and to obtain treatment for illness promptly, rather than waiting until medical problems escalate and require emergency attention. Yet the latter track is precisely the one to which many immigrants would be driven, resulting in enormous additional costs -- especially for cities and states. Similarly, it is not rational to exclude from coverage incarcerated prisoners who will have been eligible for health care prior to incarceration, and will regain eligibility as soon as they are released. Continuity of care for these persons is no less important than continuity of care for all others, and health care provided to them will be more efficient, cost-effective and protective of the public health if not interrupted or reduced during their incarceration. Native Americans > Native Americans are also threatened with inadequate coverage under the enrollment provisions of the Health Security Act. Section 8302(b) offers Native people an apparent choice between enrolling in a health plan or electing to receive health services through one of the health programs of the Indian Health Service (IHS) -- programs that are explicitly not defined as health plans under the Act. However, Native Americans will have a strong financial incentive to choose a free IHS health program, section 8302(c), rather than a health plan with its applicable premiums, deductibles, coinsurance, or co-payments, section 8302(d). This would be unobjectionable if IHS programs provided health services comparable to regional alliance health plans, but they do not. Although the Health Security Act requires IHS health programs to provide the comprehensive benefit package to their enrollees, section 8304(a), the effective date for this requirement is delayed until 1999 -- most likely out of a recognition that IHS programs are ill-equipped to offer such services today. If Native Americans will be driven toward receiving their health c are through the IHS, protections must be written into the Act to ensure that IHS health programs provide them with care comparable to what is being provided to others. 2. Accessibility and Affordability From the equal-protection perspective, it is not enough that a reformed health care system guarantee adequate health care to all Americans on paper. Unless health care services are both accessible and affordable, many people will continue to be deprived of care. The Health Security Act incorporates a number of provisions designed to increase access to health care in underserved communities and to reduce the cost of health care for the poor. Nevertheless, the ACLU believes that more is required to ensure that all eligible individuals will have meaningful access to health services. Accessibility > Section 1203(e)(1)(A)(i) of the Act requires states to ensure that all eligible families have "adequate access to enroll in a choice of regional alliance health plans providing services in the area in which the individual resides." To accomplish this end, states may require certain health plans to "cover all (or selected portions) of the alliance area." Section 1203(e)(1)(B). Moreover, all health plans will be required to contract for five years with Essential Community Providers in their service area, section 1431; Essential Community Providers are health care professionals and institutional providers who serve medically underserved populations or areas. Section 1583. In addition, the Act creates, or permits states to offer, a variety of incentives to encourage health plans and/or providers to offer health services in underserved communities. The ACLU believes that provisions of this sort are essential steps toward ensuring meaningful access to health care. Nevertheless, the ACLU has serious questions about whether the Act will lead to adequate provision of health services in currently under served communities. The nation's current system of health care in America is marked by broad inequalities of treatment that relate to race and economic status. The Act does not take sufficient steps to redress this pervasively discriminatory pattern. N or does the Act establish any standards to define what it means for a health plan to "serve" an area. Many mechanisms provided by the Act ostensibly to encourage the delivery of medical care to underserved areas are matters of state discretion. One state may provide incentives to assure services to its medically needy, while comparable needs in neighboring states go unaddressed. Nor are there any assurances that the various financial incentives (even if offered and fully funded) will be sufficient to bring adequate numbers of health care providers to underserved communities. At a time when our nation' s inner-city infant mortality rate is higher than that in many developing nations, the ACLU believes it imperative for the Act to incorporate meaningful standards -- as well as explicit legal remedies -- to ensure that there will be real access to all health care items and services included in the comprehensive benefit package in our underserved communities. Affordability > The Health Security Act would take great strides toward rendering health care affordable for most of the population. The employer mandate and the establishment of the lower cost-sharing option, section 1132, would help lower the price of health care to many. The requirement of community rating in setting premiums would eliminate disproportionately high premiums charged to older persons, people with disabilities and those with extensive medical care needs. A variety of subsidies for poorer people would help bring coverage within their reach. Nevertheless, for many poorer people, the cost of care would still be so prohibitive as to bar them from seeking treatment for their medical needs. Even under the lower cost-sharing schedule, patients will be responsible for a co-payment of ten dollars per visit for most medical services, as well as a five dollar co-payment for each prescription they fill. Section 1135. While AFDC and SSI recipients will have this co-payment reduced by 80 percent, section 1371(c)(2), all other poor persons -- including individuals receiving state general assistance and those who are eligible for but not receiving AFDC or SSI -- will be obliged to make these comparatively expensive payments. For a family living at or near the poverty line, such co-payments may represent a substantial portion of their available funds, forcing them to choose between obtaining medical treatment and the other basic necessities of life. Moreover, the aggregate limits on cost sharing are excessive for the poor. Under the Act, poor families will be expected to absorb $3000 of out-of-pocket costs -- the same as an affluent family -- and an individual will face out-of-pocket charges of $1500. These "limits" represent over 20 percent of poverty level income for an individual or family of four, according to Administration figures, and over 30 percent for a married couple with no children. They are an unreasonable burden for poor people to bear. The ACLU understands that the purpose of the co-payment requirement is to ensure that people exercise some personal responsibility in deciding when to seek health care services. However, the government would be irresponsible in asking poor people to defer medical care when they need it. Yet this is precisely the choice to which the government would push many poor people, including many individuals who today are eligible for care through Medicaid. Co-payments should either be completely eliminated for t he poorest people or, at a minimum, the 80 percent reduction in cost-sharing for AFDC and SSI recipients should be extended to all other low-income individuals and families, and annual out-of-pocket limits on cost-sharing should be capped at a modest percentage of income. Enabling services > Many people -- especially those who are poor, undereducated, disabled or not fluent in English -- are daunted by the complexity of our health care system and the difficulties of obtaining treatment. Even if adequate health care services are available in a community at low cost, people are often deterred from seeking treatment by the difficulties of finding a doctor, making an appointment and getting to the office. For this reason, adequate enabling services are essential if health care coverage is to be truly universal. Enabling services are designed to assist people in utilizing the health care system. Such services include transportation, scheduling assistance, community and patient outreach, patient education and translation services. The Health Security Act recognizes their importance. For example, sections 3461-62 establish a grant program to provide enabling services in medically underserved communities. See also section 3424 (requiring community health groups to offer services to overcome obstacles in the way of access to care). Section 1203 authorizes, but does not require, states to provide extra services -- such as outreach, transportation and interpreting -- to overcome barriers to access. Although enabling services are currently mandated under Medicaid, the Act would guarantee their continued availability only to AFDC and SSI recipients. Section 4221. Low-income adults, including many persons with disabilities who have little or no disposable income, need enabling services to access other health care benefits. The ACLU believes that enabling services must continue to be made available to all indigents, language minorities and the near poor, and not limited only to SSI or AFDC recipient s. To achieve the goal of universal coverage, necessary enabling services for all who need them must be added to the package of benefits guaranteed by the Health Security Act. B. HEALTH CARE BENEFITS 1. Comprehensive Benefit Package The Act's "comprehensive benefit package," which defines those treatments and services that universal care will provide, also raises significant issues of equal protection. Although the government is not required to include coverage for every conceivable medical treatment in its health program, limitations or exclusions are impermissible if they have the effect of depriving particular subgroups of their right to comprehensive, adequate care. Close scrutiny is warranted if the subgroups have historically been disadvantaged or politically powerless, such as women and children, racial, ethnic and sexual minorities, the poor and the disabled. The comprehensive benefit package guaranteed by the Health Security Act is a laudable effort that would make access to important treatment and services more equitable for many groups and individuals that are currently underserved. In particular, the pro visions of coverage for clinical preventive services, and for outpatient prescription drugs, represent important expansions over many existing policies. Likewise, the elimination of any lifetime cap on coverage, and the prohibition against limiting cover age based on pre-existing conditions, serve to increase the protections afforded eligible individuals. Nevertheless, the ACLU has a number of equal-protection concerns about the scope of the comprehensive benefit package that Congress should address as it considers legislation. Mandatory provision of the comprehensive benefit package > All health plans are required to provide all of the health care services included in the comprehensive benefit package. Section 1406(a) requires all health plans to "enter into such agreements with health care providers or have such other arrangements as may be necessary to assure the provision of all services covered by the comprehensive benefit package to eligible individuals enrolled in the plan." Similarly, section 1402(b)(1) prohibits a health plan from "terminat[ing], restrict[ing], or limit[ing] coverage for the comprehensive benefit package in any portion of the plan's service area for any reason." The ACLU supports these provisions. One matter, however, requires clarification. The reference to "such other arrangements" in section 1406 raises a question about whether health plans must provide all covered services through their "provider networks," section 1402(f), or whether some services need only be available as "out-of-network items and services." In the ACLU's view, all health plans must be required to offer the complete comprehensive benefit package through their provider networks. Such a requirement would ensure that enrollees in lower cost-sharing plans would be able to receive all covered services in accordance with the lower cost-sharing co-payment schedule. This appears to be the intention of section 1402(d)(1), but the statutory language is unclear. Also, as discussed earlier, the ACLU calls for clear and enforceable standards to ensure meaningful access to all covered services throughout a plan's service area. Medical necessity or appropriateness > Section 1141(a) excludes from the comprehensive benefit package all items and services that are "not medically necessary or appropriate." The ACLU has no objection to this limitation; in our view, medical appropriateness or necessity should be the touchstone for coverage. However, this standard should apply in both directions. Services that are excluded from the comprehensive benefit package in the ordinary case should be covered when they are necessary elements of a covered course of treatment under the Health Security Act. For example, HIV/AIDS disease often causes dental problems that require treatment; yet the comprehensive benefit package excludes treatment of dental disease for persons over 18. Section 1126. Whether or not this limitation is appropriate in the ordinary case, it should not prevent a person living with HIV/AIDS from receiving dental care necessitated by the illness. Therefore, Section 1141 should be amended to permit expanded coverage for certain services where medically necessary. Such a provision is also required to counterbalance section 1141(a)(2), which authorizes the National Health Board, by regulation, to exclude coverage for items and services it determines are not medically necessary. When a health care provider determines that an item or service covered by the statute is medically necessary for a particular patient, that determination must override the more generalized judgment of the Board. Preventive services > Section 1114 presents an extensive list of covered clinical preventive services for persons of varying ages. In addition, section 1153 authorizes the National Health Board to define additional clinical preventive services for particular high risk populations. Finally, section 1112(b) provides that a listed clinical preventive service may be provided at times or frequencies other than those set forth in section 1114 and covered as a health professional service, so long as it is medically appropriate. As noted above, the ACLU supports the decision to include preventive health care as part of the comprehensive benefit package. We are concerned, however, that the schedule of clinical preventive services listed in section 1114 may be deficient in several respects. For example, it is our understanding that the provisions on health care for minors permit fewer clinician visits than recommended by the American Academy of Pediatrics. Similarly, questions have been raised about whether section 1114 provide s for adequate coverage of women's Pap tests and mammograms, as well as about that section's apparent failure to include coverage of syphilis screening for women of childbearing age who are at risk for fertility-related infectious diseases. It is not sufficient, in our view, to suggest that such services might be covered under either section 1153 (through National Health Board rulemaking) or section 1112(b) (authorizing episodic, medically necessary services). The American public has the right to be assured that its health care system will provide adequate preventive coverage, and that service exclusions are not impermissibly linked to gender or historical vulnerability. Moreover, services under section 1112(b) are subject to co-payments or co-insurance, which the Act clearly recognizes are not appropriate for preventive services and, thus, may prove unaffordable for many indigent individuals. At a minimum, the table of co-payments and co-insurance in section 1135 should be modified to eliminate any cost-sharing for preventive services provided under section 1112(b). Finally, outside of the comprehensive benefit package, the President's plan provides enhanced preventive care benefits for AFDC and SSI recipients that are equivalent to current Medicaid benefits, section 4221(a)(1). But it fails to make comparable provision for other low-income adults, including disabled persons having no disposable income. No indigent should be denied preventive care that is deemed necessary by the Medicaid program. Women's health > The Health Security Act properly recognizes that women have many unique health needs. As just discussed, the Act makes separate provision for clinical preventive services for breast and cervical cancer, as well as fertility-related infectious illnesses. Section 1114. In addition, section 1116 provides coverage for family planning services, prescription contraceptives and services for pregnant women, including prenatal and postpartum care. Section 1135. Reproductive services are the health services most commonly sought by women. Comprehensive reproductive care encompasses a wide variety of services, including pelvic exams, contraception, pregnancy testing, fertility treatment, prenatal care, obstetrics , abortion, treatment of gynecological disorders and sexually transmitted diseases, Pap tests for uterine cancer screening and treatment for menopause. The ACLU supports the inclusion of a complete range of these services in whatever comprehensive health package is adopted by Congress. Women need all of these services at various stages. The same woman will choose contraception, abortion or prenatal care at different periods of her life. She will not necessarily be able to anticipate or predict in advance which service she will need at any given time, so all must be available to her at all times. None of these services is dispensable if women are to have their health needs adequately met. It is imperative that the comprehensive health care package include, as currently proposed, abortion as one of a number of reproductive options for women. Women have a fundamental constitutional right to choose to have an abortion. This right is based on both the equal protection and privacy protections guaranteed by the First, Fourth, Fifth, Ninth and Fourteenth Amendments. By providing coverage for abortion services, the Health Security Act properly recognizes that abortion is a complex decision that belongs to a woman alone. The ACLU believes, however, that the Act must clarify that abortion services cannot be restricted or delayed by a health plan's "gatekeeper" requirements. In addition, we assume that the Act means to leave it to the physician , in consultation with her patient, to determine whether a procedure is medically necessary or appropriate under section 1141 (which limits comprehensive benefit package services to those that are "medically necessary or appropriate"). Under current federal Medicaid provisions, women with family incomes up to 133 percent of the federal poverty line, and in some states up to 185 percent of the poverty line, receive fully subsidized prenatal care, labor and delivery services, and postpartum care. The Act threatens all but those persons eligible for AFDC or SSI, who generally live well below the poverty line, with loss of no-cost coverage for these critical services. For poor and low-income women, even low premiums and co-payments may pose insurmountable barriers to care. The Act should not deprive low-income women of access to pregnancy-related services, and any exemptions for low-income women from premiums and co-payments related to such services should apply equally to abortions. Services for individuals with disabilities > Individuals with disabilities often require extensive health care services and incur disproportionate health care costs. To satisfy equal protection concerns, a health reform system must be sensitive to the needs of disabled people. The Health Security Act's elimination of both lifetime caps on benefits under health insurance policies and restrictions on coverage for pre-existing conditions is essential for the equitable treatment of disabled persons' health needs. The ACLU support s these provisions. Nevertheless, the ACLU has at least two concerns regarding coverage for the disabled under the comprehensive benefit package. First, we question the limitation on outpatient rehabilitation services under section 1123. Section 1123(b)(1) limits such services to those that "restore functional capacity or minimize limitations on physical and cognitive functions as a result of an illness or injury." This language would appear to exclude rehabilitation services for the treatment of disabilities existing at birth. This restriction should be eliminated. Second, the ACLU is concerned about the limitations on services for mental illness and substance abuse under section 1115. Some forms of mental illness are disabilities recognized and protected under the Americans With Disabilities Act. Therefore, the strict annual limits on services for mental illness in section 1115 would have a disproportionately adverse effect on the disabled. In addition, health plans are authorized to limit coverage under this section "based on criteria that the plan may choose to employ." This limitation effectively undermines any guarantee that mental health and substance abuse services would be available. Like other essential health services, mental health and substance abuse services should be an entitlement under the Act, and the scope of covered services should be expanded for those persons whose mental illnesses and substance abuse constitute disabilities. 2. Supplemental Benefit Programs Not all health services will be provided through health plans offering the comprehensive benefit package. The Health Security Act includes a variety of other programs offering various forms of health care services. A few of these raise equal protection concerns that deserve at least brief mention here. Home and community-based services for individuals with disabilities > Sections 2101 et seq. establish federal funding for programs to provide home and community-based services for persons with disabilities. States become eligible for this funding by sub mitting an approved plan for a program offering these services. However, the Act is quite explicit that no individual entitlement to these services is intended. Section 2101(b). The ACLU believes that, although a state need not participate in this prog ram, once it has submitted an approved plan eligible residents of that state have a right to services that are necessary and appropriate. Virtually all of the other health benefits conferred by the Act are explicitly declared to be entitlements. Serious equal protection concerns are raised by the Act's differential treatment of benefits to home and community-based services. Medicaid > Under the Health Security Act, the Medicaid program would be reduced to a shadow of its former self. For all persons currently receiving Medicaid, other than those who are also recipients of AFDC or SSI benefits, Medicaid would be reduced to a financing program for long-term care services and Medicare cost-sharing. Section 4221. While AFDC and SSI recipients would continue to receive Medicaid coverage for all items and services not covered by the comprehensive benefit package -- such as dental care, eyeglasses, rehabilitative services, durable medical equipment and comprehensive mental health and substance abuse treatment -- other current Medicaid recipients would be ineligible for expanded coverage and face prohibitively high co-payments. The ACLU opposes this differential treatment of indigents who are similarly situated as a group because of their dire financial need. At a minimum, as already noted, supplemental Medicaid services should remain available to all classes of people currently eligible for Medicaid. Another concern is raised by the transformation of the early and periodic screening, diagnostic and treatment services program (EPSDT), the existing Medicaid program of health services for children. The Health Security Act retains the outlines of EPSDT through the creation of a program of "services for poverty-level children with special needs." Section 4222. This program retains essentially the same eligibility standards as EPSDT, and it is structured to cover all EPSDT services beyond the scope of t he comprehensive benefit package. All of the foregoing is desirable, for EPSDT has been a critically important health care service for those poor children who have had access to its benefits. Many states, however, have consistently failed to live up to their legal obligations under EPSDT, so that millions of eligible children have never been able to avail themselves of the program's services. Unfortunately, the Health Security Act caps federal funding for section 4222 services at the level of Medicaid funding spent on covered EPSDT services in 1993 (adjusted for changes in the number of eligible children and for inflation). As a result, funding for this program will remain inadequate and necessary preventive health care will remain out of reach for many indigent and vulnerable children. C. FINANCING HEALTH CARE REFORM Equal protection issues arise in connection with the proposed system for financing health care reform. In matters of revenue raising, courts have traditionally granted the political branches of government a great deal of leeway, and they have generally upheld financing schemes if they could find a reasonable basis for the distinctions they drew. Nevertheless, any time a financing scheme treats two similarly situated entities differently there is a potential equal protection concern. A comprehensive analysis of the Health Security Act's financing scheme, which is exceedingly complex, is beyond the scope of this paper. Here we can only highlight a few provisions. On the positive side, the Health Security Act promotes principles of equal protection by eliminating many of the sharp disparities that plague our existing medical insurance system. By eliminating experience rating, and by allowing most families to purchase health care coverage through a common regional alliance purchasing pool, the Act goes far toward equalizing individuals' opportunity to obtain health care at a reasonable price. In a number of ways, the Health Security Act also discourages discrimination by taking away certain incentives to differentiate among groups. For example, by paying health plans a blended per capita rate for enrollees, whether they are enrolled at the normal premium or at a lower rate as an AFDC or SSI recipient, sections 6201-02, the financing scheme deters health plans from discriminating against recipients of cash assistance. Likewise, by mandating risk adjustment for payments to health plans, section 1541 removes (or at least reduces) a disincentive for enrolling individuals who are likely to have disproportionately high health care costs. Finally, by blending the employer premium obligation for single parent and two parent families to yield a uniform rate, section 6122(a)(3), the Act eliminates an incentive for employers to prefer one category of employees to another. Third, the Health Security Act takes account of differences in ability to pay by reducing certain payment obligations for poorer families. Sections 6104 and 6113 limit the rate and amount of a family's obligations for premiums and repayment of the alliance credit based on income, while section 1371 reduces cost-sharing obligations for some low-income families. The Act also provides for sliding payment scales for services offered by qualified community health plans and practice networks, section 3424, and for home and community-based services for people with disabilities, section 2105. Finally, the ACLU supports the establishment of a tax credit to reduce the cost of personal assistance services for working persons with disabilities. Section 7901. This provision furthers the nondiscrimination goals advanced by the Americans with Disabilities Act by easing the path for disabled people to reenter the workforce. However, the ACLU is troubled by some aspects of the Health Security Act's financing provisions. Several of our concerns relate to the differential treatment of particular categories of the poor. We are also concerned about the disparities that will inevitably arise in premium costs among alliances. Our principal concern relates to the differential treatment accorded low-income families receiving cash assistance through AFDC or SSI by comparison to other poor families. Under the Act, AFDC/SSI recipients pay no premiums, section 6104, and have their co-payment obligations reduced by 80 percent, section 1371(c)(2). Other families living near or below the poverty line must pay a premium equal to a percentage of their income, and they are also obligated to pay the full co-payments required under the l ower cost-sharing schedule. There is no legitimate basis for this distinction, which for many poor families would result in a reduction of health care from current levels. AFDC eligibility varies widely among states, so a poor family eligible in New York may not qualify in Mississippi. Also, since AFDC eligibility may be lost when a low-income person returns to the workforce, these provisions would discourage AFDC recipients from seeking employment. In the ACLU's view, premium and co-payment reduction s, which we strongly support, should be based on ability to pay, not on the source of a family's income. There are other inequities in the Act's treatment of certain categories of poor people. Under section 1902(25), for example, all poor families are presumed to have two children for purposes of calculating the applicable poverty level. Thus, a single mother with four children would be treated as a family of three for determining her premium discount, while a two-parent family with the same income and only one child would receive a greater premium reduction because the Act treats them as a family of four . Also, unlike those covered through regional alliances, poor families enrolled in corporate alliance health plans would always be obliged to pay at least five percent of the premium for their health plan. Section 6104(a)(2). We are also concerned about the inequalities in financing that would arise between persons living in different alliance areas. Although the Health Security Act contains protections against concentrating the poor or others with high health care costs in particular alliances, section 1202, it is inevitable, given the uneven distribution of the poor throughout the country, that some alliances would bear a disproportionate share of high-cost, low-income families. Because premiums and related obligations under the Act are determined separately for each alliance, employers and full premium paying families in these alliances would be forced to pay higher amounts. The ACLU believes that efforts should be made to share this burden more widely. Finally, the proposed financing system might increase the incentive for certain large employers to discriminate against workers with high cost medical conditions, or workers who are perceived to be at risk for illness and disease due to personal characteristics or lifestyles. Most employers would pay the same rates, regardless of their employees' health costs. Large employers, however, could self-insure by operating corporate alliances and could lower their costs by getting rid of or refusing to hire high risk employees. To prevent this, the ACLU believes that the Act should bar employment discrimination based on medical condition or conduct that increases medical risks. D. TRANSITIONAL INSURANCE REFORM The Health Security Act also contains a number of provisions for transitional insurance reform. These provisions would govern health insurance policies during the period before the new health care system is in place. Not surprisingly, given the transitional nature of these provisions, they tend to go part way toward achieving the benefits of the new system. These provisions include strict limitations of an insurer's ability to terminate coverage for an insured and a requirement that insurers accept new employees into existing group insurance plans, section 11003; a prohibition against adjustments of premium rates based on claims experience, section 11004(b)(4)(C)(ii); limitations on exclusions for pre-existing conditions and waiting periods, section 1 1005; and a partial prohibition against discriminatory reductions of benefits for particular medical conditions, section 11006. While none of these provisions goes as far as the new health care system proposed under the Health Security Act to eliminate inequalities and discrimination in the provision of health care services, each represents an improvement over our current health care system. The ACLU, therefore, supports these transitional measures, as interim steps toward comprehensive reform. E. REMEDIES FOR DISCRIMINATION In addition to the inclusion of substantive provisions that further equal protection, it is important than any health care reform legislation contain protections against discrimination. Any health care reform plan as complex as the Health Security Act would necessarily create numerous opportunities for discrimination. The Health Security Act does incorporate a number of provisions that prohibit discrimination, see, e.g., sections 1203, 1328, 1402, 1605, 1607(a)(3), and 4004, but these provisions take a scattershot approach to the subject, differing in terms of the entities covered, the forms of discrimination outlawed, and the legal standard for finding a violation. The ACLU believes that a more comprehensive response to discrimination is required. In this section, we first discuss the requirements for such a response before offering a few specific comments on the provision in the Health Security Act barring discrimination in alliance boundaries. 1. General Requirements In the ACLU's view, a comprehensive anti-discrimination section should be incorporated into the Health Security Act. The provisions of this section should meet each of the following requirements: Covered entities > The prohibition against discrimination should extend to all entities that are assigned functions or responsibilities under the Health Security Act and should apply to all actions taken by those entities in fulfilling those functions and responsibilities. Covered entities would include at least the following: the National Health Board and other agents of the federal government assigned responsibilities under the Act; states, regional and corporate alliances, health plans, health care providers and employers. We envision statutory language that would read something like: "No person, in carrying out functions or responsibilities pursuant to this Act or in connection with the provision of health care in accordance herewith, shall discriminate ..., nor shall they discriminate against any person based upon the manner in which he exercises his rights under this Act." Prohibited discrimination > The Act should broadly prohibit various forms of discrimination, whether or not it seems likely in a particular context that a particular form of discrimination will occur. The ACLU believes that the Act should prohibit discrimination based on any of the following characteristics or perceived characteristics: race, national origin, gender, age, religion, disability, socio-economic status, citizenship or immigration status, sexual orientation, language, political beliefs, family status, health status or anticipated need for health services. Standard for discrimination > The prohibition on discrimination should outlaw not only intentional discrimination, but also conduct that has a discriminatory effect. Section 1402(c)(1) of the Health Security Act is an example of such a provision. Under such a discriminatory effects provision, any defense based on a claim of "business necessity" must be narrowly circumscribed. The burden must be placed on the defendant to establish both that the discriminatory practice was justified by business necessity and that no less discriminatory alternative is available. Under no circumstances, however, should business necessity be a defense to a claim of intentional discrimination. Affirmative action > The Health Security Act contains a number of provisions designed to increase minority representation among health care workers, and to improve health care services in underserved minority communities. Any anti-discrimination provision should clearly provide that such programs and other appropriate affirmative efforts to increase services to underserved populations or remedy underrepresentation do not constitute unlawful discrimination. Enforcement provisions > The Act should establish procedures for enforcing its prohibitions against discrimination through private civil actions, administrative enforcement proceedings and civil enforcement measures. In egregious cases, criminal penalties may also be appropriate. Persons aggrieved by violations of the prohibitions against discrimination should be able to bring a private civil action for damages and/or equitable relief. Prevailing plaintiffs should be awarded attorney's fees, expert witness fees and costs. Section 5238 is the provision of the Health Security Act that comes closest to providing the range of enforcement procedures we recommend. Applicability of existing anti-discrimination laws > The Health Security Act should expressly provide that the inclusion of particular anti-discrimination provisions in the Act is not intended to, and does not, preempt the application of existing state or federal anti-discrimination laws to the conduct of persons dispensing health services or otherwise carrying out functions under the Act. Moreover, the Act should expressly provide, in a manner similar to section 5239, that all regional alliances, health plans and health care providers receiving payment for services pursuant to the Act shall be treated as recipients of federal financial assistance for purposes of applying the relevant provisions of existing federal civil rights statutes. 2. Alliance Boundaries Section 1202(b)(4) of the Health Security Act prohibits states from discriminating in establishing boundaries for alliance areas. In addition to the modifications suggested above, because we believe that it will be exceedingly difficult to modify alliance boundaries once they are established and operational, the ACLU recommends that regional alliance boundaries be subjected to preclearance review in a manner similar to that required for electoral changes in covered districts under the Voting Rights Act. Preclearance review would provide assurances that alliances are structured in a nondiscriminatory way before they begin operation, and would minimize the necessity for dismantling and reorganizing these boundaries after the reformed health care system h as taken effect. To similar effect, section 1202 contains language prohibiting states from "otherwise tak[ing] into account" race, national origin, socio-economic status and the like in establishing alliance boundaries. In our view, states should take these characteristics into account so as to draw alliance boundaries that further our national commitment to integration. The Act should expressly instruct states to draw alliance boundaries, subject to preclearance review, that avoid concentrating minorities, the poor or the disadvantaged in particular alliances. II. PERSONAL PRIVACY Health care reform raises serious issues concerning personal privacy. The Constitution guarantees a right to privacy, including both privacy of personal information and autonomy in personal decision-making. Decisions about medical treatment are among the most sensitive decisions we make, and our medical records contain some of the most intimate and confidential information about our lives. We have already discussed the issue of including abortion and other reproductive health services in the comprehensive benefit package. The right to reproductive choice, which, in the ACLU's view, mandates the inclusion of these services, is grounded in the constitutional right to privacy, as well as the right to equal protection. In this section, we focus on issues of privacy in personal information. The Health Security Act proposes to develop a national electronic data network of medical information, which potentially poses a serious threat to the confidentiality of medical records. In addition, the proposed health care financing system, by setting deductibles and out-of-pocket limits on families rather than individuals, threatens to reveal a patient's medical treatment to her parents or spouse. Finally, the Health Security Card that the plan proposes to give to every enrollee poses a grave danger of becoming a national identity card and also creates dangerous opportunities for discrimination. The ACLU opposes these threats to information privacy, and believes that any legislation must incorporate comprehensive privacy protections. A. PRIVACY OF MEDICAL INFORMATION Crucial to one's sense of self and autonomy is the right to maintain some decision-making power over what information is divulged, to whom and for what purpose. The ACLU believes that the protection of informational privacy, particularly of intimate and sensitive medical records, is central to any health care reform proposal. 1. Medical Record Confidentiality The Health Security Act would require the creation of a national, linked electronic data network containing vast amounts of biographical and health information on virtually every U.S. resident. Such a network would have a tremendous impact on an individual's ability to control the use, disclosure and security of personal and sensitive information. In the ACLU's view, a privacy policy for health information must be based on the following central principles: 1) Strict limits on access and disclosure must apply to all personally-identifiable health data, regardless of the form in which the information is maintained. 2) All personally-identifiable health records must be under an individual's control. No personal information may be disclosed without an individual's uncoerced, informed consent. 3) Health record information systems must be required to build in security measures to protect personal information against both unauthorized access and misuse by authorized users. 4) Employers must be denied access to personally-identifiable health information on their employees and prospective employees. 5) Patients must be given notice of all uses of their health information. 6) Individuals must have a right of access to their own medical and financial records, including rights to copy and correct any and all information contained in those records. 7) Both a private right of action and a governmental enforcement mechanism must be established to prevent and/or remedy wrongful disclosures or other misuse of information. 8) Establishment of a federal oversight system to ensure compliance with privacy laws and regulations. The Health Security Act acknowledges the importance of maintaining the confidentiality of an individual's medical records and protecting such information against unauthorized disclosure and use. Findings, Section 2. Moreover, in general, the Act incorporates many of the foregoing principles of privacy protection, section 5120(c), and in that sense it provides the framework for an enforceable and effective protection scheme. According to the Act, disclosures of personal information must be strictly limited. Individuals would have a right of access to their own health information, and disclosure to third parties would require patient consent. Law enforcement agencies would have access to such information only for limited health-related functions, and use by employers would be absolutely barred. Further, individuals would be given notice of how information would be collected, used and shared. The Act also contemplates federal legislation to protect the privacy of individually identifiable health information, which would include a code of fair information practices, along with enforcement provisions. Section 5122. However, the Health Security Act lacks any specific proposal for accomplishing its privacy mission. Instead, the Act defers to a later date the National Health Board's responsibility for developing privacy standards. From the date of enactment, the Act gives the Board two years to promulgate standards for the privacy and security of individually identifiable health information, section 5120 (a), and three years to submit a legislative proposal to provide a comprehensive scheme of federal privacy protection, section 5122. The Act's statement of privacy principles, without more, is insufficiently protective of personal privacy. Although the principles included in the Act are quite strong, the ACLU believes that the Act must from the outset include explicit, enforceable privacy protections. Studies show that it is difficult, if not impossible, to build privacy and security protections into a complex information system once it is already in place. Rather, privacy protections must be built in at the "front end." The creation of a satisfactory health information system, one that respects and protects patient privacy, can occur only if the Clinton Administration sets forth as part of the enabling statute the privacy requirements that must guide the system's design, along with an effective enforcement mechanism. For example, the Act requires the creation of an electronic data network that will link regional centers to collect, compile and transmit information. Such an amassing of sensitive, personal information would seriously jeopardize information privacy if legal requirements are not in place from the outset. The ACLU firmly believes that any health reform plan must contain specific and enforceable limitations against the use of medical information, and sanctions for misuse. We will strongly support efforts to convert the privacy principles in the Health Security Act into such specific, enforceable legislation. 2. National Identifier/Social Security Number The creation of a national electronic data network -- facilitated by a card and a unique identifier -- raises very serious privacy concerns. The ACLU believes that any personal information collected and amassed for inclusion in the system's electronic data network should not be used for any non-health related purpose. We acknowledge that the Act limits the permissible uses of the health security card, section 5105, and establishes criminal penalties for its misuse, section 5438. It is important to recognize, however, that such a comprehensive, linked database would pose a great temptation to others in the private and public sector who would want access to the information for a variety of purposes, ranging from marketing to law enforcement. Once the network is in place, it would be very difficult for Congress to limit its use. Indeed, the history on this issue is replete with examples of information systems being created for a limited purpose, only to be expanded at a later date after pressure. The Social Security system, created for a limited purpose 60 years ago, now functions as a de facto national identifier, and the FBI's criminal records systems, initially developed for law enforcement, is now used primarily by the non-law enforcement community. To prevent the expanded use of a medical electronic data network, Congress must be committed to maintaining and enforcing the Act's health care mission and the privacy principles that it articulates. We urge that the Act prohibit the National Health Board from using the Social Security number as the unique identifier number for accessing health information. The Social Security number is a notoriously unreliable number, but one that is used for a wide array of public and private purposes. The Social Security Administration has testified that the Social Security number is not a reliable identifier due to the high percentage of duplicate, fraudulent and inaccurate numbers. Currently, there is no way to verify the accuracy of existing numbers or that the number holder is who she claims to be. For both of these reasons, the use of the Social Security number would jeopardize the privacy and security of personal health information maintained under the Act. Further, because the Social Security number has become the most widely used identifier -- even on most driver's licenses -- health records would become vulnerable to abuse. Even without a card, a national health plan that relies on the Social Security n umber as an identifier has the potential to threaten the privacy of individual medical information. The Act should require the Board to develop a new unique identifier, limited to the health care context. In this way we can best protect personal health records from unauthorized access. 3. Financing and Intra-Family Privacy The financing provisions of the Health Security Act raise concerns about the ability of an individual to protect against disclosure of confidential medical information to members of her own family. Under the Act, health plans provide coverage on a family rather than an individual basis; premiums and cost-sharing obligations are calculated in the same way. This approach may compromise individual privacy. When an individual obtains any health service that is subject to cost-sharing under the Act, it would be necessary for the health care provider or health plan to determine whether any applicable family deductible or out-of-pocket limit has been met. In order to make this determination, a combined record of family medical expenditures must be maintained. As a result, another family member might be able to obtain information about care received by a child or spouse. Individuals should have the right to receive medical treatment without their family's knowledge. Therefore, protections must be built into the financing system to prevent this kind of disclosure. B. NATIONAL HEALTH CARD The Health Security Act requires the creation of a health security card and a unique identifier system for individuals, sections 5104-05, and gives the National Health Board substantial discretion in determining the type of card and identifier. The creation of any type of national card raises serious civil liberties problems. The type of national health card and identifier scheme outlined in the Act is especially problematic for several reasons. Based on our experience, the national health care card envisioned by the Act would result in widespread discrimination against foreign-appearing citizens and residents, would become a de facto national identity card and would greatly increase the threat to personal privacy. Discrimination > The Act's health care card would lead to discrimination in at least two significant ways. At the outset, foreign-appearing U.S. citizens and residents are likely to face discrimination when applying for a card (as well as when attempting to replace a card). Because the Act would exclude a large segment of the immigrant community, some type of screening process would presumably be necessary to determine who is eligible for a card. The Act does not specify who would be responsible for ad ministering this process. Whether it is a federal, state or private entity, immigrants and "foreign-appearing" citizens, especially Latinos, Asians and persons with accents, would be subjected to greater scrutiny and disparate treatment by skeptical administrators charged with deciding who should receive a card. In addition, once a national card is in place, foreign-appearing citizens and residents would face discrimination outside of the health care context. Despite proposed penalties against the use of the card for non-health related reasons, it is inevitable that banks, employers, landlords and law enforcement, among others, would begin requiring individuals to produce the card to prove their identity and status. Moreover, immigrants ineligible for health care under the Act -- many of whom possess work authorization and are permanently residing in the United States under color of law -- would be unable to produce a card and be denied equal treatment. The prospect of discrimination is not speculative. A recent report by the General Accounting Office (GAO) has documented the widespread discrimination that has resulted from Congress' 1986 decision to make employers quasi-immigration inspectors by requiring them to verify a job applicant's immigration status before hiring. There is every reason to believe that the health card proposed under the Health Security Act would result in at least as much discrimination. National identity card > Independent of any discrimination problems, the Clinton card would evolve into a de facto national identity card that all citizens and residents -- regardless of appearance or immigration status -- would have to carry with them a t all times in order to function in society. At present, a variety of regional documents can serve as identification. Once a single, uniform national card is created, it would replace all other forms of identification and function like "official papers" or like an "internal passport" functions in other countries. Privacy > The card would also exacerbate the Act's threat to individual privacy, particularly if the National Health Board adopts the Social Security number as the health identifier and places the number on each card. As noted above, the Social Security system is neither reliable nor secure. This is due in large part to the expanding uses of the Social Security system, giving an increasing number of people access to one's number. Placing an individual's Social Security number on health cards would substantially compound the problem by further exposing the number, thereby threatening both sensitive health records and all of the personal information currently linked to the Social Security system. Indeed, because a national health care card would eventually replace all other forms of identification and, thus, be required for virtually every function in society, using the Social Security number in the health care context would dramatically increase the number's exposure. The ACLU believes that the most effective way to avoid all three of these civil liberties problems is to eliminate the card from the plan. We recognize that a health system that covers only some U.S. residents may need a mechanism for identifying eligible participants. We also recognize that health care providers would benefit from ready access to an individual's relevant medical history. Yet both of these objectives can be accomplished without a card, and further study must be given to alternatives to the card. If, however, some form of national card is approved, it must contain the following features. First, to eliminate discrimination against foreign-appearing individuals, a card must be provided to all persons, regardless of immigration status or health car e eligibility, and that card must not contain any visible information regarding an individual's immigration status or eligibility for health care. Issuing a card to all residents of the United States is a viable alternative, since every resident, regardless of immigration status, is eligible under the Health Security Act for at least emergency care. The card could contain information indicating limitations on the individual's entitlement to coverage, but that information must be reflected in encoded information accessible only to authorized health care individuals. In addition, even if the card is issued to everyone to reduce the potential for discrimination, it would still have the potential to become a national identity card. To reduce that possibility, the card should contain no visible information useful for serving as an identity or "status" document. It should resemble a bank cash card, which contains little information on its face and can be accessed only by an individual entering his or her code number into a computer. Finally, to reduce threats to privacy, the card under no circumstances should contain an individual's Social Security number -- even if the Social Security number were ultimately adopted as the individual health identifier. III. DUE PROCESS The Constitution mandates that no person shall be deprived of "life, liberty, or property, without due process of law." A government-supervised system of comprehensive health care affects each of the three interests protected by the due process clause. At the most basic level, inadequate health care can deprive an individual of life. In addition, a denial of health care can also impair an individual's ability to engage in normal life activities, a liberty interest that is also protected by due process. Finally, health care affects individual property interests -- in premiums and cost sharing, and in the health care items and services to which a person is statutorily entitled. For these reasons, any health care reform legislation must comply with due process. In this section, we discuss those aspects of due process that relate principally to procedure: the process that is due when an individual interacts with the health care system and the adequacy of that process to protect the individual's life, liberty and property interests. At its core, procedural due process requires that an individual receive timely and meaningful information about rights and responsibilities, and that fair procedures be in place to challenge a deprivation of rights. A. CONSUMER INFORMATION Due process requires that individuals receive timely and meaningful notice of their rights under a reformed health care system. This includes information about health care plans necessary to make deliberate and well-reasoned choices; about a chosen plan 's scope of coverage; about financial obligations; about how to challenge abuse or adverse decisions, whether by a plan, alliance, employer, provider or some other actor in the health care system, and information about how medical records may be used and by whom. In order to satisfy due process, information must be thorough, understandable, accessible and timely: Thorough > Information provided by the health care system must be sufficiently comprehensive for consumers to make meaningful choices among their options. For example, in choosing among health plans, consumers must be thoroughly informed about costs, benefits, providers, quality of care and limitations on services. Understandable > Information must be presented in a straightforward fashion and in lay language, so that it can be interpreted by a person without a background in health care, insurance or finance. Information must also be available in alternative format s and languages other than English to meet the needs of individuals with disabilities or of limited English proficiency. Trained support personnel must be available to answer questions and to assist individuals to understand their options. Accessible > Information is only useful if it gets into the hands of those who need it. General informational materials should be distributed directly to all consumers. More specialized or detailed information must also be developed and distributed to targeted populations. In addition, steps must be taken to publicize how consumers can obtain additional information and assistance on an as-needed basis. Timely > Information must be provided in a timely fashion, so that consumers can consider their options in an informed and deliberate way before decisions must be reached. The Health Security Act gets only mixed marks for consumer information. We believe that the Act establishes an acceptable framework for ensuring protection of due process rights for consumers. We are concerned, however, that it leaves open, without sufficient guidance, many troubling gaps for later development or rule-making. Although the Act recognizes the importance of providing notice to consumers, it is too often vague about the information that must be disseminated and the procedures that must be available. Selection of health plan > Section 1325 of the Act requires that regional alliances, prior to each open enrollment period, make information available to eligible enrollees so that they can make valid comparisons among health plans. The materials must be "in an easily understood and useful form" and include information on cost, quality of care performance, participating providers, any restrictions on access to providers and services. In similar fashion, health plans must also provide "timely and complete information" on similar subjects to applicants and participants. Section 1404(b). Employers must likewise provide new employees with information on the plans that are available. Section 1603(c). Finally, alliances are required to conduct educational programs "to assist consumers in using quality and other information in choosing health plans." Section 5012(4). Despite these provisions, the Act leaves open many important questions about the kind and quality of information that will be provided to consumers to allow them to reach threshold decisions about health care plans. The Act defers many of the most important questions about consumer information to rulemaking by the National Health Board but fails to provide guidance to ensure that the ultimate rules comport with due process. At a minimum, every alliance should be required to distribute information -- in alternative formats where appropriate -- to all potentially eligible enrollees, and regional alliance ombudsmen, section 1326, or similar persons or groups should be assigned responsibility to assist consumers in comprehending these materials. Health plans and employers must also play a meaningful role in distributing information. Health plan information for enrollees > Once a person selects a particular health plan, she should be entitled to receive comprehensive information about her health care coverage, comparable to the materials provided by many employer-financed health insurance programs today. The only requirement imposed by the Health Security Act -- that health plans disclose their "utilization management protocols" to enrollees -- is plainly insufficient from a civil liberties perspective. Section 1412. In addition, enrollees must be provided full information about their rights, benefits and responsibilities. Applications for premium discounts and reduced cost-sharing > Under the Health Security Act, low-income families may apply for premium discounts and reductions in cost-sharing. Sections 1371-73. Alliances are required to distribute applications "directly to consumers and through employers, banks, and designated public agencies," and to assist individuals in filing. Section 1374(a) and (h). In our view, the Act should also explicitly require that alliances inform all potentially eligible families of these programs in an understandable, timely and thorough manner. Rights of veterans, Native Americans and members of military families > Under the Health Security Act, veterans and Native Americans may elect to enroll in health programs sponsored by the Veterans Administration or the Indian Health Service, respectively, or they may enroll in a regional alliance health plan. Sections 8101 and 8302. Similarly, military families may have the option of enrolling in a Uniformed Services Health Plan. Section 8001. Again, due process mandates that affected individuals be provided timely and adequate information about available health care options before reaching critical decisions that will affect their lives and well-being. B. ACCESS TO JUSTICE Due process further requires that adequate procedural protections be provided for individuals whose rights under the Act are denied. This requirement has two components: First, the Act must provide substantive remedies for individuals whose rights are denied by creating causes of action and rights to relief; second, the Act must establish procedures for enforcing those rights that are designed to yield fair, accurate and expeditious resolutions, taking into account both the importance of the interests involved and the risk of an erroneous deprivation of those interests. 1. Substantive Remedies for Enforcing Rights The Health Security Act creates private rights of action but confines them to limited violations by a narrow range of actors. The ACLU believes that the Act must expand substantive remedies to provide relief for all violations of its provisions. Claims for payment or provision of benefits > The Act allows consumers to challenge a health plan's decision to deny payment or withhold services that are included in the comprehensive benefit package. As part of the process that is due, an individual i s entitled to have an adverse decision reviewed at the plan, alliance, federal administrative and judicial levels. Sections 5201-06. The Act also permits a claimant to go directly from plan-level review to court. While the Act expressly provides that a claimant may obtain an order of payment or services through the administrative process, a comparable remedy may not be available if judicial review is sought. Instead, a claimant who opts to go to court will have her rights and remedies determined by state law. Section 5206. The Act must be amended to guarantee the availability of an enforcement order through either the administrative or judicial route. The ACLU firmly believes that an adequate enforcement mechanism must be available, wherever a consumer resides, and that the federal right to health care cannot be defeated by limitations under state law. Outside the comprehensive benefit package, the Act in two specific cases declares new health benefits for eligible individuals but leaves ambiguous the scope of enforcement mechanisms for challenging deprivations of those benefits. Section 1115 incorporates certain mental health and substance abuse services in the comprehensive benefit package. However, the Act limits eligibility for some of these benefits to the "discretion of [the] plan ... based on criteria that the plan may choose to employ." Sect ion 1115(d)(2)(A) & (e)(2)(B); see also section 1115(c)(2)(B). In the ACLU's view, a plan's selection of criteria and its application of those criteria in specific cases must be subject to review under the claims procedure established by sections 5201-06 . The Act should make explicit that claims arising under section 1115 may be reviewed pursuant to the general enforcement procedure of sections 5201-06. Similarly, sections 2101-09 authorize states to establish programs for home and community-based services. However, section 2102(b) dilutes this important health care right by stating that nothing in these sections "shall be construed to create an entitlement for individuals." The ensuing sections define the states' responsibilities in terms of requirements for an acceptable state plan, thus arguably rendering these provisions subject to the Supreme Court ruling in Suter v. Artist M., 112 S.Ct. 1360 (1992), which has been read to limit the availability of 42 U.S.C. 1983 to enforce rights under state plans. Home and community-based services are essential benefits for those who need them, and the Act should ensure that once a state has an approved plan to provide such services, aggrieved individuals have the right to enforce the state's responsibilities owed them under these sections. Enforcement of rights against states and alliances > The Health Security Act establishes a federal private right of action against a state or alliance to enforce responsibilities imposed on those entities by the Act. Sections 5235 and 5237. The Act creates an analogous right against the federal government when it acts in the role of a state by operating an alliance system. Section 5236. The ACLU supports the creation of these remedies. The Act should, however, be explicit that it effects a waiver of Eleventh Amendment and state and federal sovereign immunity defenses that might otherwise be available to defeat claims and damage awards. The Act should also make clear that a state is a "person" for purposes of enforcement under 42 U.S.C. 1983. Enforcement of rights against health plans > In addition to the claims procedure described above, the Act establishes a cause of action to redress alleged discrimination by health plans under section 1402(c). Section 5238(a). However, the Act does not create a general cause of action against health plans to redress other denials of rights. The limited cause of action to challenge a plan's denial of payment or services is not alone sufficient. The Act should be amended to create a private right of act ion against health plans, comparable to sections 5235-37, and a correlative cause of action. Damages and equitable relief should be available. Enforcement of rights against the federal government > The Health Security Act creates no private right of action against the federal government and its various departments, agencies and boards, except when the federal government assumes the role of a state by operating an alliance system. Section 5236. It is, of course, true that enforcement may be secured through various federal statutory vehicles, including the Administrative Procedure Act. Nevertheless, given the express rights of action against states and alliances and the importance of health care to all consumers, the Health Security Act should expressly establish both a private right of action against the United States, or any department, board or agency thereof, and a correlative general cause of action for violation of any responsibility or duty imposed by the Act, including a right to damages and equitable relief. Declaratory judgments > Federal and state rules of procedure allow parties to an actual controversy to secure a judicial declaration of rights and legal relations. The availability of declaratory relief recognizes the importance in certain circumstances of clarifying rights and duties as expeditiously as possible. In the health care setting, the stakes are too high to require consumers to postpone litigation until after a formal denial of benefits has occurred. Rather, the Act should make explicit that where an actual controversy exists between an aggrieved individual or class of similarly situated individuals, on the one hand, and a health plan, alliance, state or federal government, or their agents, on the other, an action for declaratory relief may be commenced. 2. Fair Administrative Procedures Once a remedy exists, due process requires that fair and adequate procedures be in place that are designed to yield equitable and accurate results in a timely fashion. The Health Security Act creates numerous administrative remedies for consumers to challenge denials of rights or benefits. The Act is less clear, however, in articulating the procedures that govern the administrative remedies provided. The ACLU believes that certain modifications are needed to meet constitutional norms. Health plan claims procedure > The most elaborately detailed procedures set forth in the Health Security Act govern challenges to a plan's denial or delay in providing payment or benefits. Sections 5201-15. The Act provides for up to four layers of review of benefit denials, with optional recourse to alternative dispute resolution programs or directly to court. Section 5203. The procedures governing these claims include, inter alia, notice requirements, opportunities for review by impartial decisionmakers, a right to representation at critical stages of the proceedings and expedited procedures for urgent requests. Although these procedures show a sensitivity to due process concerns, the ACLU nevertheless believes that several modifications are necessary. First, the notice provisions of section 5201(b)(1) should be amended to require effective notice for the actual claimant. While the present provision mandates language understandable to a "typical individual," including one whose primary language is not English, there is no explicit requirement that the language be appropriate for the actual claimant. In the health care setting, individuals should never be deprived of their rights without actual, meaningful notice. Second, the prescribed procedures contemplate a prolonged process of review, perhaps taking more than a year to complete. While such a delay may be acceptable in certain limited cases, particularly where services have already been provided, it is unacceptable where the individual is seeking preauthorization for treatment. Shorter deadlines for such claims must be established and strictly enforced. In addition, section 5201(c) should clarify that either an individual or a provider can provide the attestation required for an urgent request. Finally, given the potential delays in the administrative process, the Act should provide that any applicable statute of limitations is tolled during the pendency of administrative review. Lastly, the complexity of the administrative scheme itself may threaten due process by creating traps for the unwary. Claimants must first exhaust plan remedies before filing a complaint with an alliance complaint review office. They must file such a complaint before they can seek court review, and an election to go to court or to an administrative hearing cuts off other potential remedies. Under these circumstances, it is critical that all potential claimants receive timely, meaningful notice that effectively describes the administrative process and the consequences of any decision they may make. Given the complexity of the system, the Act should also protect against unintentional errors by including an explicit rule that insignificant procedural mistakes can be disregarded. For example, a claim filed directly with a court after exhaustion of plan remedies should not be dismissed but, instead, transferred to a complaint review office as if properly filed there. (The analogy here is to Rule 4 of the Federal Rules of Appellate Procedure, treating notices of appeal mistakenly filed with the court of appeals as timely filed in district court.) Under no circumstances should procedural rules allow individuals to lose substantive rights through inadvertence. Miscellaneous remedial provisions > Numerous provisions of the Act call for the establishment of fair hearing procedures or mandate the promulgation of regulations to govern review of particular decisions. See, e.g., sections 1344, 2002, 2103, 2326, 234 2, and 4202. We believe that the Act should codify specific procedures or at least define minimum procedural protections that will be applicable in each of these cases. 3. Judicial Review The right of access to the courts is central to our constitutional order. Only through judicial review of executive and legislative action can the purposes of our separation of powers be effectuated, and only in rare instances may government actions be absolutely insulated from judicial review. Despite these principles, in two instances the Health Security Act attempts, improperly in our view, to restrict judicial review. First, section 5241 purports to limit jurisdiction over facial constitutional challenges to the Act by establishing a "statute of limitations" to take effect one year after the Act becomes law, and also by prohibiting preliminary injunctive relief. Neither provision is constitutional. The so-called statute of limitations would absolutely bar constitutional challenges to the Act by many persons who may not suffer injury from unconstitutional provisions of the Act until after the time limit on suits has expired. (The utter absurdity of this provision is demonstrated by the fact that any person born more than a year after enactment would never be able to challenge the Act's constitutionality.) Similarly, the anti-injunction provision would prohibit courts from exercising their equity jurisdiction to prevent irreparable and unconstitutional injury. Congress may not prohibit courts from providing effective relief for constitutional violations. Second, in somewhat different fashion, section 5232 of the Act attempts to insulate National Health Board determinations regarding premium caps from judicial review. These board determinations may affect the level of payment received by every alliance, health plan and health care provider in the country, as well as the premiums paid by every family and employer. While the courts have upheld the constitutionality of statutory provisions that restrict the judicial review of certain matters committed to agency discretion, these determinations do not fall in that category. The Act establishes determinate standards for calculating premium targets and for reducing payments to plans and providers. These determinations must be subject to judicial review when they adversely affect particular persons. 4. Attorneys' Fees Access to justice is often illusory unless a consumer can find competent counsel to undertake representation. This is especially true where the success of a lawsuit will turn on complex issues of statutory construction and factual disputes about medical necessity. For this reason, it is essential that any health reform plan provide for the possibility of attorneys' fees on behalf of consumers who challenge adverse decisions. The President's bill recognizes the importance of attorneys' fees to an enforcement regime and provides for payment of attorneys' fees (including expert witness fees) to the prevailing party in an administrative or judicial proceeding. The Act's provisions take two basic forms: Some require a mandatory award of fees but only to a prevailing plaintiff or complainant, see, e.g., section 5204; others make the award optional but extend it to any prevailing party, see, e.g., section 5237. The ACLU believes that all of the attorneys' fee provisions should be mandatory but limited to a prevailing plaintiff or complainant, most often a health care consumer. A guaranteed award of fees to prevailing plaintiffs promotes access to justice and furthers the right t o counsel. By contrast, the threat of fee awards to defendants -- usually health care plans and alliances -- will discourage consumers from exercising their rights to review. Sanctions for frivolous litigation, such as those found in section 5204(d)(3)( B) and Rule 11 of the Federal Rules of Civil Procedure, are sufficient to discourage litigation abuse. 5. Medical Malpractice Reform The Health Security Act amends both federal and state tort liability for medical malpractice in a number of respects. While the ACLU does not believe that all "tort reform" limitations on liability necessarily implicate constitutional rights, several of the provisions of the Act raise civil liberties concerns and should be modified or rejected to protect due process. Overbroad definition of medical malpractice claim > The so-called tort reform provisions of the Act apply to all "medical malpractice claims," defined to include all "claim[s] brought against a health care provider or health care professional in which a claimant alleges that injury was caused by the provision of (or the failure to provide) health care services," excluding claims for intentional torts or products liability. Section 5301(7). The ACLU fears that this definition is overbroad. For example, this language could apply to a discriminatory effects claim brought against a health care provider for failure to treat. It is not limited to the professional negligence claims at which it was aimed. This statutory language should be narrowed. Authorization for more restrictive state laws > While the Health Security Act itself imposes generally modest restrictions on civil tort liability for medical malpractice, section 5301(a)(2) permits states to impose more substantial restrictions that would more clearly contravene constitutional rights. This approach of establishing a federal ceiling for liability, but not a floor, should be rejected. Any federal legislation in this area should establish uniform federal standards for liability. Mandatory alternative dispute resolution > Section 5302 of the Act requires that a person asserting a medical malpractice claim submit the claim for mandatory alternative dispute resolution (ADR) before she may file a malpractice suit. The proposed ADR system is required to be affordable, timely, fair and non-binding. As such, it satisfies most of the ACLU's due process concerns with such procedures. Nevertheless, there is one protection that must be added. The Act must mandate that submission of a malpractice claim for ADR tolls any applicable statute of limitations to prevent the claimant from losing her right to a judicial remedy. Certificate of merit requirement > For medical malpractice actions, section 5303 requires the plaintiff to submit an affidavit attesting that a "qualified specialist" has determined that there is a "reasonable and meritorious" basis for the lawsuit. In concept, the ACLU does not oppose such a certification requirement. In light of the mandatory ADR process, a plaintiff is likely to have identified a qualified expert to support her claim before going to court. Moreover, the proposed certification does not go beyond the allegations the plaintiff will need to prove to establish liability, and the deadline for submitting the affidavit can be extended to avoid statute of limitations problems or difficulty in obtaining medical records.Nevertheless, the ACLU must oppose this provision as too restrictive because of the definition of a "qualified specialist." Section 5303(c) requires that a "qualified specialist" must have practiced or taught in the "same area of health care or medicine that is at issue in th e action" within the past six years. This is a far more restrictive definition than that required for an expert witness under Rule 702 of the Federal Rules of Evidence. Therefore, this provision imposes a burden on the plaintiff beyond that required to establish liability and thus denies access to justice. C. GOVERNMENT ENFORCEMENT PROGRAMS Due process also applies to the government's efforts, both federal and state, to enforce responsibilities imposed by the Health Security Act. The Act establishes an elaborate enforcement regime, including criminal sanctions, civil monetary penalties and disqualifications from participation in various parts of the health care system. 1. Civil Enforcement Measures The Act's civil provisions, in general, exhibit a sensitivity to due process concerns, but modifications are needed. Civil monetary penalties > The Health Security Act creates numerous new civil monetary penalty provisions, covering everything from unreasonable denial or delay in the payment or provision of benefits, section 5207(a), to misuse of a health security card , section 5141(a), or breach of confidentiality in the Early Resolution Program, section 5213(g). The Act establishes explicit due process protections governing the imposition of most of these civil penalties, usually by reference to section 1128A of the Social Security Act. Section 1128A provides, among other things, for written notice, an opportunity to be heard on the record, representation by counsel, presentation and cross-examination of witnesses and a right to judicial review before civil monetary penalties may be imposed. 42 U.S.C. 1320a-7a. In a few instances, however, no due process protections are included. See, e.g., sections 1345(d), 1374(i), and 1609. A few provisions state only that the relevant Secretary may bring a civil action in court to enforce a penalty but provide no details about the court's standard of review. The ACLU believes that due process protections, such as those found in section 1128A of the Social Security Act, must be applied to all civil monetary penalties that may be imposed under the Health Security Act. Disqualifications > The Act also establishes numerous grounds for excluding persons from participating in federal health care programs on either a mandatory or permissive basis. Sections 4044-45 and 5411. Due process protections for exclusion determinations are included by reference to section 205 of the Social Security Act, 42 U.S.C. 405. However, the Health Security Act includes at least two other types of disqualification penalties for which it fails to offer any due process. Section 1404(b)(2) prohibits state certification for any health plan that provides materially inaccurate information to a regional alliance and eligible individuals, thus disqualifying the health plan from participation in the health care system. Section 1375(d) disqualifies low-income families from receiving premium deductions or reductions in liability if they fail to file an end-of-year reconciliation statement without good cause. No procedures are set forth for either determination. This is constitutionally unacceptable. At a minimum, the Act must be amended to guarantee process comparable to that for exclusions from participation. Indeed, the ACLU believes that the disqualification under section 1375 should be eliminated altogether. Rather than punishing poor families for failing to file a reconciliation statement, alliances should be required to provide them with assistance to assure that they can comply with this technical requirement. Collection practices > The Health Security Act requires regional alliances, assisted by the states, to "use credit and collection procedures ... as may be necessary to collect amounts owed to the alliance." Section 1345(a). No limitations are stated. Due process requires that fair collection practices be reasonable under the circumstances, that they not unreasonably intrude on individuals' liberty or property, and that all targets of collection efforts receive adequate pre-collection notice and be afforded an opportunity to contest the alliance's claim and any penalties that may be imposed. Misdirected sanctions > A fundamental principle of due process is that sanctions be imposed only on persons who are legally responsible for the misconduct that gave rise to the penalty. In at least one instance, the Health Security Act violates this principle. Sections 1512-13 sanction a state for failing to comply with the requirements of the Act by reducing the amount of federal payments to academic health centers, health researchers and hospitals serving vulnerable populations in the state. It is unreasonable and a violation of due process to punish such entities (at least if they are not public entities) for the state's noncompliance. 2. Federal Criminal Enforcement The Health Security Act adds a number of new provisions to the federal criminal code and, in other respects, expands federal criminal authority. While the ACLU does not oppose the creation of new federal crimes per se, we do believe that some of these new offenses further an unfortunate trend toward the overfederalization of criminal law. We are also concerned by a provision in the Health Security Act that expands federal criminal forfeiture authority. Creation of new federal crimes > Subtitle E of Title V of the Health Security Act creates at least five new federal criminal offenses: health care fraud, section 5431; false statements relating to health care matters, section 5433; bribery and graft in connection with health care, section 5434; theft or embezzlement in connection with health care, section 5437; and misuse of the health security card or unique identifier, section 5438. Whether or not it is wise to create new federal offenses is beyond th e scope of this report. However, the ACLU is troubled by the reach of these provisions. The first four of these offenses each extends to conduct involving health plans, whether or not it has any effect on an alliance, a state or any federal interest. In fact, the health care fraud statute reaches any scheme to defraud any person in connect ion with the delivery of or payment for health care benefits, items or services. We fear that this overfederalization of criminal law will burden federal prosecutors and further clog the federal courts. The ACLU believes that enforcement in many of these cases should be left to state authorities. The criminal provisions of the Health Security Act should be narrowed to apply only to cases in which the federal government has a real interest. Expansion of criminal forfeiture > Section 5432 imposes mandatory criminal forfeiture as part of the sentence for certain federal health care offenses. The ACLU generally opposes both mandatory sentencing provisions and expanded use of the forfeiture sanction; thus, we oppose this provision as an unwarranted extension of criminal law. At a minimum, however, any forfeiture provision cannot be more broadly drawn than the President's proposal: It extends only to property used in the commission of the offense or the proceeds thereof, it is limited to an amount proportionate to the seriousness of the offense, and it is imposed at sentencing rather than in a separate civil proceeding with lower burdens of proof. IV. FIRST AMENDMENT FREEDOMS Health care reform also raises important civil liberties issues under the First Amendment. It implicates both the constitutional right to free exercise of religion and the right to freedom of speech. Whether they are patients or providers, people may not be forced to participate in medical treatment that is in conflict with their religious beliefs or moral convictions: Providers must be entitled to refuse to perform particular services as an exercise of conscience, while individuals whose faiths reject modern medicine must be free to opt out of the health care system altogether. Separately, a number of the marketing restrictions imposed by the Health Security Act appear to violate the constitutional right to freedom of speech, while in other contexts additional protections may be required to prevent deprivations of that right. A. FREEDOM OF RELIGION The right to opt out of the health care system > The constitutional right to free exercise of religion is implicated by the requirement that all eligible individuals enroll in health plans. Section 1323. Certain faiths, notably Christian Science, reject conventional medicine. Practitioners of such religions, and others whose moral or religious beliefs prohibit them from accepting medical treatment, cannot be compelled to join a health plan. Rather, as with compulsory military service, the Health Security Act must recognize the equivalent of "conscientious objector" status. Conscience Clause > Patients are not the only ones who possess a First Amendment right to opt-out based on sincerely held religious or moral beliefs. Individual health care providers cannot be compelled to perform medical procedures that would violate t heir personal beliefs or convictions. Such a government mandate would be a clear violation of the Free Exercise Clause. Section 1162 of the Health Security Act is, therefore, appropriately respectful of the personal beliefs of health care providers when it states: "A health professional ... may not be required to provide an item or service in the comprehensive benefit package if the professional ... objects to doing so on the basis of a religious belief or moral conviction." However, although individual health care providers are properly protected by section 1162, different issues are raised when institutions claim a religious or moral right to refuse to provide services that are part of the mandatory comprehensive benefits package. As currently written, section 1162 would permit any "health facility" to refuse to perform a procedure on either religious or moral grounds. This provision is far too broad because it would allow any health facility to impose its stated institutional beliefs on patients and individual providers who do not share them. The provision also does not take into account the serious Establishment Clause issues that arise whenever sectarian institutions participate in, and derive benefits from, government-managed and regulated programs. In addition, an institutional opt-out should not make it more difficult to fulfill the Act's requirement that every plan provide a full range of services. In a situation where access to an alternative facility is impossible or an undue burden upon patients, any institutional right to opt-out may be outweighed by the patient's right to necessary medical services. Because these issues are not adequately addressed, the ACLU opposes section 1162 in its present version. B. FREEDOM OF SPEECH The constitutional protection for freedom of speech is implicated in two basic ways by the Health Security Act. First, some of the consumer marketing restrictions and requirements imposed by the Act run afoul of the First Amendment. Second, additional legal protections need to be adopted to ensure that no person or health care provider is penalized for exercising her right to free speech. Marketing practices > The Act contains a number of restrictions on consumer marketing by health plans and purveyors of long-term care insurance. Sections 1404 and 2324. Some of these restrictions are unobjectionable. The government may legitimately regulate commercial speech in certain ways to prevent consumer fraud, promote health and safety and prohibit discrimination (such as redlining). However, the regulations must be narrowly tailored to these ends. Several provisions in the Act cross this constitutional line. Most conspicuously, the requirement in section 1404(a)(1) that health plans submit all marketing materials to their regional alliance for prior approval must be rejected as an unconstitutional prior restraint on speech. If a health plan distributes marketing materials that contain false or materially misleading information, it can be punished for this misconduct after the fact. Similarly, the prohibition on cold lead advertising, and the required disclosures by membership entities endorsing long-term care insurance policies in section 2324(e)(4) & (g)(2), overreach. While both provisions appear to be intended to prevent consumer fraud, neither is narrowly tailored to achieve that end: The former improperly outlaws a lawful sales technique, while the latter improperly compels speech, whether or not the entity's endorsement would otherwise be misleading. Statutory protections for speech rights > First Amendment concerns are also raised by the absence of certain protections in the Act. Health plans are prohibited from discriminating on the basis of race or gender, inter alia, in the selection of provider s for their plan networks. Section 1402(c)(2). However, nothing in the Act prohibits a health plan from excluding a provider based on her political beliefs, or from restricting the exercise of her First Amendment rights as a condition for participation. Such actions would have a chilling effect on political participation by health care providers and should be prohibited. Similarly, the Act currently contains no protections for employees of health plans or alliances who "blow the whistle" on improper practices by their employers. Federal whistle-blower protections should be extended to such people. February 1994 The American Civil Liberties Union (ACLU) is a nonpartisan organization of 275,000 members. Founded in 1920, the ACLU is the only organization devoted solely to realizing the promise of the Bill of Rights for all people within the United States. The ACLU has more than a dozen national projects on specific issues: AIDS, arts censorship, capital punishment, children's rights, education reform, lesbian and gay rights, immigrants' rights, national security, privacy and technology, prisoners' rights, repro ductive freedom, voting rights, women's rights and workplace rights. The ACLU has national offices in New York City and Washington, D.C., as well as affiliate offices or chapters in every state, whose dedicated staffs and volunteers are assisted by volunteers from the legal community. This national network, guided by the principle that "eternal vigilance is the price of liberty," works to preserve, defend and expand the individual rights that are the bedrock of our democracy. ============================================================= ACLU Free Reading Room | A publications and information resource of the gopher:// | American Civil Liberties Union National Office | | "Eternal vigilance is the price of liberty"


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