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ENCOURAGING DEVELOPMENT OF AND OTHER RATIONAL WORKPLACE AND

PUBLIC POLICIES, BUT AT OUR DARKEST HOUR LAST OCTOBER, B.J. AND

HIS BOARD STEPPED FORWARD TO EXTEND THE HAND OF FRIENDSHIP TO

ME AND THE OTHER COMMISSIONERS, AND WISH US WELL IN OUR WORK.

IT WAS A GENEROUS GESTURE, AND THE WORKING RELATIONSHIP BETWEEN

THE LEADERSHIP COALITION AND THE COMMISSION WAS EXCELLENT

THROUGHOUT MY TENURE. I WANTED TO THANK B.J. PUBLICLY TODAY

FOR THAT.

THANK YOU.

Floral Tames

CHAPTER NINE: LEGAL AND ETHICAL ISSUES

Section I. Discrimination

Throughout our investigation of the spread of HIV in the United States, the Commission has been confronted with the problem of discrimination against individuals with HIV seropositivity and all stages of HIV infection, including AIDS. At virtually every Commission hearing, witnesses have attested to discrimination's occurrence and its serious repercussions for both the individual who experiences it and for this nation's efforts to control the epidemic. Many witnesses have indicated that addressing discrimination is the first critical step in the nation's response to the epidemic.

HIV-related discrimination is impairing this nation's ability to limit the spread of the epidemic. Crucial to this effort are epidemiological studies to track the epidemic as well as the education, testing, and counseling of those who have been exposed to the virus. Public health officials will not be able to gain the confidence and cooperation of infected individuals or those at high risk for infection if such individuals fear that they will be unable to retain their jobs and their housing, and that they will be unable to obtain the medical and support services they need because of discrimination based on a positive HIV antibody test.

As long as discrimination occurs, and no strong national policy with rapid and effective remedies against discrimination is established, individuals who are infected with HIV will be reluctant to come forward for testing, counseling, and care. This fear of potential discrimination will limit the public's willingness to comply with the collection of epidemiological data and other public health strategies, will undermine our efforts to contain the HIV epidemic, and will leave HIV-infected individuals isolated and alone.

On the other hand, the Commission has also received testimony about situations in which HIV-infected individuals have been treated with compassion and understanding by employers, coworkers, fellow students, and members of their local community. From these contrasting experiences, it is clear that the key to an enlightened and compassionate response is education and the planning and development of HIV programs and policies well in advance of the occurrence of the first case of HIV infection. The Commission believes that every employer, school system, and community should start that education and planning process now. In general, because HIV is blood-borne and sexually transmitted, there is no need to treat those infected with HIV in a manner different from those not infected in such settings as the workplace, housing, and the schools. In the vast majority of workplace and public settings there is virtually no risk of the direct exposure to body fluids which could result in HIV transmission. Detailed Centers for Disease Control (CDC) guidelines have been issued for dealing with HIV infection in those cases which require special handling, such as health care workers and other workers who might be exposed to blood or those schoolchildren who lack control of their body secretions.

Therefore, discrimination against persons with HIV infection in the workplace setting, or in the areas of housing, schools, and public accommodations, is unwarranted because it has no public health basis. Nor is there any basis to discriminate against those who care for or associate with such individuals.

It is illegal to discriminate against persons with AIDS in those local jurisdictions with AIDS-specific anti-discrimination statutes, in those states which include AIDS as a protected

handicap under their disability anti-discrimination laws, and in programs which receive federal funds. Section 504 of the Rehabilitation Act of 1973 is the federal anti-discrimination statute which prohibits discrimination against otherwise qualified persons with disabilities (including persons subject to a range of AIDSrelated discrimination) in any program or activity receiving federal funds.

Nevertheless, complaints of HIV-related discrimination persist and their number is increasing. For example, HIV-related cases handled by the New York City Commission on Human Rights have risen from three in 1983, to more than 300 in 1986, to almost 600 in 1987. Similarly, the Office of Civil Rights which enforces federal disability discrimination law in programs funded by the Department of Health and Human Services reports a rise in complaints related to HIV infection in the past few years. AIDS advocacy groups and civil rights organizations nationwide also are experiencing an increase in HIV-related discrimination cases.

As a witness at the Commission's hearing on discrimination explained, individuals infected with HIV face two fights: the fight against the virus and the fight against discrimination. Just as the HIV-infected must have society's support in their fight against the virus, these individuals must have society's support in their fight against discrimination and must have assurances that policies will be implemented to prevent discrimination from occurring in the future.

One of the primary causes of discriminatory responses to an individual with HIV infection is fear, based on ignorance or misinformation about the transmission of the virus. We cannot afford to let such ignorance and misinformation persist. Each publicized incidence of discrimination, such as the picketing of a school that has admitted a child with HIV infection, perpetuates this ignorance and sows doubts in the minds of those who hear of it. This undermines current and future HIV education programs as well as rational HIV policies.

Furthermore, each act of discrimination, whether publicized or not, diminishes our society's adherence to the principles of justice and equality. Our leaders at all levels-national, state, and local-should speak out against ignorance and injustice, and make clear to the American people that discrimination against persons with HIV infection will not be tolerated.

Just as our society has taken a definitive stand on discrimination against persons with other handicapping conditions and illnessessuch as cerebral palsy, mental retardation, and cancer-society must take a stand on discrimination against persons with HIV infection. The United States has been an international leader in affirming and promoting the civil rights of persons with disabilities. While much remains to be done, as a nation we can take great pride in the progress we have made in embracing persons with disabilities as a part of the mainstream of society. Persons with HIV infection must be clearly and definitively guaranteed their civil rights and be protected against discrimination just as persons with other disabilities are. Such protection enables the HIV-infected person to become a partner with social institutions in limiting further spread of the infection and supporting effective care-giving systems.

Obstacles to Progress

The Commission has identified the following obstacles to progress in combating discrimination against persons with HIV infection:

• There is not a societal standard or national policy statement clearly and unequivocally stating that discrimination against persons with HIV infection is wrong.

• There is no comprehensive, national legislation clearly prohibiting discrimination against persons with HIV infection as a handicapping condition.

• There is a lack of coordinated leadership from our public and private institutions on the issue of discrimination against persons with HIV infection.

• A patchwork of federal, state, and local laws is both confusing and, ultimately, ineffective in preventing discrimination or providing remedies.

• Enforcement of existing anti-discrimination laws is slow and ineffective.

• Education about transmission of the virus and about the laws banning HIV-related discrimination is insufficient. This results in ignorance, mis. information, acts of discrimination, and, in some persons, an irrational fear of association with those who are HIV-infected.

The Commission believes that removing these obstacles and eliminating HIV-related discrimination will require coordinated action by all Americans—by individuals and organiza

ered under Section 504. The Commission supports the position that Section 504 coverage applies to persons who are HIV positive yet asymptomatic.

Section 504's prohibition against discrimination extends, however, only to federally funded programs and activities. Thus, large segments of the population in the private sector do not fall within its jurisdiction. There is no existing federal anti-discrimination protection for persons with disabilities facing discrimination in the workplace, housing, or public accommodations which do not receive federal funds.

RECOMMENDATIONS

The Commission believes that federal disability anti-discrimination law should be expanded to cover the private as well as the public sector. Specifically, the Commission recommends:

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Comprehensive federal anti-discrimination legislation which prohibits discrimination against persons with disabilities in the public and private sectors, including employment, housing, public accommodations, and participation in government programs, should be enacted. All persons with symptomatic or asymptomatic HIV infection should be clearly included as persons with disabilities who are cov ered by the anti-discrimination protections of this legislation.

The National Council on the Handicapped, an independent federal agency comprised of 15 members appointed by the President to make recommendations on public policy issues affecting people with disabilities, included a proposal for a comprehensive federal law of this kind in their January 1988 report to the President. Their proposal, the Americans with Disabilities Act of 1988, was recently introduced in the United States Congress. The Commission believes that this type of comprehensive, disability anti-discrimination legislation should serve as a model for federal legislation in this area.

The Commission does not intend for antidiscrimination legislation to invoke affirmative action for persons with HIV infection. In other words, no one would be required to hire an individual with HIV infection based on that status.

The Commission recognizes that particular attention will need to be paid to the impact of such legislation on small employers, as has been done in other civil rights laws. Any dis

ability anti-discrimination law passed should be consistent with, and not go beyond, the reach of existing civil rights laws for other groups such as minorities and women. In carrying out provisions of the new legislation, all persons with disabilities should have access to the same support services as those covered under other comprehensive federal anti-discrimination laws. The Commission recognizes that passage of more comprehensive disability discrimination legislation by Congress may take time. Therefore, the Commission believes that it is imperative for the federal government to take immediate steps to inform the public regarding existing federal anti-discrimination law and regarding the remedies which are available for those who experience HIV-related discrimination by entities that receive federal financial assistance. Enforcement of existing law must be strengthened.

In 1986, the Department of Justice issued a memorandum which concluded that although federal disability law prohibits discrimination based on the disabling effects of AIDS, discrimination based on fear of contagion was not covered. The absence of any further statement from the Department of Justice has created confusion and uncertainty about its position, particularly since Arline rejected the fear of contagion argument. Specifically, the Arline decision stated:

We do not agree with petitioners that, in defining a handicapped individual under Section 504, the contagious effects of a disease can be meaningfully distinguished from the disease's physical effects on a claimant in a case such as this.

To eliminate uncertainty and clarify the applicability of federal disability law to HIV-related conditions, the Commission recommends:

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The Department of Justice, which has been designated to coordinate the enforcement of disability discrimination law for all federal agencies, should issue a follow-up memorandum expressing support for the Arline decision and withdrawing its earlier opinion that fear of contagion is not a basis for Section 504 coverage. In addition, the Department of Justice memorandum should take the lead in endorsing lower court rulings by clarifying that persons who are HIV-infected yet asymptomatic, as well as persons with symptomatic HIV infection, are covered by Section 504.

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The Office of Civil Rights within each agency should develop policy guidelines stating that all HIV-infected persons, including those who are asymptomatic, are subject to the jurisdiction of the Office. The agencies should publicize the availability of the services of their Offices of Civil Rights to those who have experi: enced HIV-related discrimination and should publish their intent to investigate actively all complaints. The agencies should distribute these policy guidelines to all contractors and grantees.

All agency Offices of Civil Rights should establish a system of aggressive investigation of violations of Section 504 in HIV infection-related cases, including expedited procedures for review of complaints and regular monitoring of those procedures.

Supplemental funds should be allocated to all agency Offices of Civil Rights to increase staff and resources for the enforcement of Section 504.

State and Local Government Response

In addition to strong federal anti-discrimination legislation, state and local legislation is needed to provide the local administrative proIcedures and courts as an alternative to federal litigation for enforcement of the rights of the HIV-infected. Local government officials are able to intervene quickly and utilize ongoing relationships in the community for rapid resolution of discrimination complaints. Rapid resolution is needed as the infected individual may well die in the time interval that a typical case is processed.

RECOMMENDATIONS

For state and local governments, the Commission recommends:

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assist in the speedy resolution of HIV-related discrimination complaints. Mediators and arbitrators should be trained to deal with the special circumstances surrounding HIV-related discrimination

cases.

Community Response

One of the primary barriers between those infected with HIV and those not infected is the widespread belief that HIV-infection is someone else's problem-there is no need to become educated about it. Individuals in large and small communities across the country are discovering that this is not the case, as they have learned to accommodate individuals with HIV infection living in their midst. In those communities which have developed HIV-related policies and guidelines for health care settings, the workplace, and the schools, and had their programs in place before the first case of HIV infection appeared, fears were reduced and individuals with HIV infection have been accepted. In some cases, where community leaders have not educated the community and not developed policies in advance, the result has been discrimination fueled by fear and ignorance, leading to divisiveness in the community and suffering for the family and friends of the infected individual.

To prevent discrimination, the primary tools at the local level are comprehensive, participatory educational programs, advance planning, and preparation. Educational programs about the transmission of the virus, the laws against discrimination, and the reasons for compliance should be developed by employers, school systems, and health care providers. Education should be provided in simple language for the layman and it should come from a person who has the confidence of those being offered the information. Local officials in government, business, public health, schools, and religious and community organizations should assume a leadership role in this effort.

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