Defending Liberty Pursuing Justice

THE AMERICAN BAR ASSOCIATION AIDS Coordinating Committee and

AIDS Coordination Project

A World AIDS Day 2002 Roundtable:

Stigma, Discrimination, and theFuture of HIV/AIDS Law, Policy, and

Advocacy

Monday, Nov. 25, 20023:00-5:30 p.m.

Bank of America Building(Penthouse, 10th Floor)

730 15th St., NWWashington, D. C. 20005

202/662-1025 or240/476-1870

Table of Contents

Welcome Message 3

About the ABA AIDS Coordinating CommitteeAnd AIDS Coordination Project 4

Professional Biographies 5

AIDS Action 9

AIDS Alliance for Children, Youth & Families 12

Global Business Coalition on HIV/AIDS 15

Global Health Council 19

Human Rights Watch 21

International AIDS Trust 26

The Kaiser Family Foundation 29

National Association of State and Territorial AIDS Directors (NASTAD) 30

National Minority AIDS Council 33

Physicians for Human Rights 35

United States Agency for International Development (USAID) 38

POLICY Project 42

Whitman-Walker Clinic 46

World Bank Group 47

Statement of U.S. Rep. Barbara Lee 49

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November 25, 2002

Dear Colleagues:

On behalf of the American Bar Association AIDS Coordinating Committee, it is with great pleasure that we welcome you to “A World AIDS Day 2002 Roundtable: Stigma, Discrimination, and the Future of HIV/AIDS Law, Policy, and Advocacy.” We appreciate your taking valuable time to prepare for and participate in this Roundtable discussion.

As we all know, HIV/AIDS is perhaps the single greatest threat to human well being confronting the world today, and likely will be for the foreseeable future. Although, in relative terms, the epidemic is “under control” domestically, keeping it under control requires constant vigilance and creativity on many fronts—including public education, treatment and prevention research, and public policy development—and an unwavering collective commitment to provide the resources necessary to do the job. Meanwhile, our relative success at home and the resources that have made it possible only highlight the enormity of the challenges facing resource-poor people with HIV/AIDS and governments around the world.

But whatever the situation in one country or region relative to another, stigma and discrimination against people with HIV/AIDS continue to drive the pandemic and to undermine the human rights of its victims, often in indirect ways. A woman who always has been dependent upon her sexually promiscuous husband for economic sustenance, for example, and therefore cannot reasonably insist that he use a condom for fear of being cut off from that sustenance (along with her children), now is rendered all the more defenseless by the severe stigma and discrimination that any questioning of his serostatus threatens. Thus, if he is HIV-positive and she contracts HIV from him, they are both doomed to an early death—and their children, to be cast adrift with little or no family to care for them. It is fair to say, therefore, that the tens of millions of children projected to be orphaned by AIDS in the next decade will have stigma and discrimination to blame for their plight—that is, for further preventing their mothers from exercising the basic human right to control one’s own body and to protect oneself from HIV infection.

This year’s World AIDS Day theme, “Stigma and Discrimination,” is therefore timely and relevant, and will continue to be so. It is our hope that this Roundtable will be but the first of many discussions on this and other key issues in the fight against the pandemic, and we look forward to exploring ways in which we may join forces in that effort.

Thanks again.

With kind regards,

Sidney D. Watson Richard T. Andrias Alan M. FreemanChair Vice Chair Program Chair

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Defending LibertyPursuing Justice

ABA AIDS Coordinating Committee

Established in August 1987, the American Bar Association (ABA) AIDS Coordinating Committee stands as the core of the ABA’s response to the HIV/AIDS pandemic. Comprised of a chair appointed by the ABA president, a vice chair, and representatives of more than 15 sections, commissions, divisions, and other ABA-affiliated organizations and bar associations, the Committee is charged with organizing the ABA’s HIV/AIDS-related activities, developing policy recommendations, and encouraging new ABA-sponsored HIV/AIDS-related programs.

Of particular note have been the Committee's continued contributions in establishing education and awareness programs for legal professionals and furthering a wide range of HIV/AIDS policy initiatives through its support of and participation in HIV/AIDS-related policy programs at the federal, state, and local levels. The Committee also has been instrumental in broadening the base of information available to legal professionals about the disease by the publication of a number of articles, position papers, and reports on current HIV/AIDS-related legal topics.

ABA AIDS Coordination Project The AIDS Coordination Project, under the auspices of the ABA Section of Individual Rights and Responsibilities, provides staff support to the ABA AIDS Coordinating Committee and develops projects that address the complex issues that HIV and AIDS present to the legal community. Since its founding in January 1988, the Project has served as a clearinghouse for dissemination of HIV/AIDS-related legal information; organized education programs for the bench and bar at national, state, and local conferences, including the ABA's Annual Meeting; and consulted on planning legal workshops by identifying speakers for locally organized education programs and assisting in the development of appropriate written materials.

Through service on advisory boards, participation in national HIV/AIDS-related policy programs, and comment on HIV/AIDS-related policy issues at the federal and state levels, the Project also plays a substantial role in the HIV/AIDS policy community. It has developed a number of the Committee’s HIV/AIDS-related legal publications, the most recent of which are Perspectives on Returning to Work: Changing Legal Issues and the HIV/AIDS Epidemic (2000), and Deregulation of Hypodermic Needles and Syringes as a Public Health Measure: A Report on Emerging Policy and Law in the United States (2001).

For more information about the Committee and the Project, please contact:

Michael L. Pates, Esq.Director, ABA AIDS Coordination Project

740 15th St., NWWashington, DC 20005

Tel.: 202/662-1025FAX: 202/662-1032

E-mail: PatesM@staff.abanet.org

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Professional Biographies

ALAN M. FREEMAN (host), member of the ABA AIDS Coordinating Committee (representing the General Practice, Solo and Small Firm Section), is an associate in the litigation practice group of the Washington, D.C. law firm of Dyer Ellis & Joseph, P.C. He has substantial experience litigating commercial disputes in state and federal courts across the country, and representing public and private clients in connection with government investigations. Alan has particular experience representing companies in the defense and prosecution of business tort litigation and civil environmental disputes. A principal focus of his practice is counseling companies on risk management practices designed to control and minimize litigation risk. In this respect, he has served as a CLE lecturer on effective techniques for the protection of intellectual property and other trade secrets. He served as a law clerk to the Honorable John A. Terry of the District of Columbia Court of Appeals.

CHAI FELDBLUM (moderator) joined the Georgetown University Law Center faculty as a visiting professor for the 1991-93 academic years. In 1993, she established a new law school clinic, the Federal Legislation Clinic, and has served as the Clinic's Director since 1993. Prior to joining the law faculty, she worked as a legislative counsel at the AIDS Action Council and at the ACLU AIDS Project, focusing on federal legislation concerning AIDS. She clerked for First Circuit Court of Appeals Judge Frank M. Coffin in 1985 and for Supreme Court Justice Harry A. Blackmun in 1986. From 1989-90, she played a leading role in drafting and negotiating the Americans with Disabilities Act (ADA). She also has worked extensively in advancing gay and lesbian rights, particularly in the drafting of the Employment Nondiscrimination Act. She engages in scholarly work and practical advocacy in the areas of disability rights, lesbian and gay rights, and health and social welfare legislation.

HON. RICHARD T. ANDRIAS, Vice Chair of the ABA AIDS Coordinating Committee, is an Associate Justice of the New York Supreme Court, Appellate Division, First Department (Manhattan and Bronx). From February 1985 to December 1987, he was the Supervising Judge of the New York County (Manhattan) Criminal Court and a trial judge in the criminal and civil divisions of the New York Supreme Court from January 1988 to June 1997. Prior to being appointed to the Criminal Court in 1983, he was a trial lawyer for the Legal Aid Society's Criminal Defense Division and in private practice doing primarily corporate and commercial litigation for several years. A graduate of Columbia Law School, Judge Andrias was the Chair of the American Bar Association's Ad Hoc Committee on AIDS and the Criminal Justice System and Co-Chair of the Association of the Bar of the City of New York's Joint Committee on AIDS in the Criminal Justice System.

DAVID BROOKS ARNOLD is Assistant to the President of the International AIDS Trust. He holds a PhD in Linguistics from Harvard University and was a longtime staff member within the United Nations system, serving both in the Office of the High Commissioner for Refugees (UNHCR) and at the UN Secretariat. Prior to joining the International AIDS Trust, Dr. Arnold was Director of International Relations, American Red Cross.

GEORGE BELLINGER, JR. is the Associate Executive Director of AIDS Action, where he focuses on Community Relations and external affairs. He has been engaged in the fight against HIV/AIDS for over two decades and on various levels, including community, coalitions, and policy development, both in the local and national arenas. He began his work in Washington, DC at the Whitman-Walker Clinic and has served our communities in various capacities—from buddy and outreach worker to Evaluation Consultant and Executive Director. He specializes in working with disenfranchised populations, including communities of color, MSM, women, substance users, and adolescents. He has worked and presented across the United States as well as in Canada, England, Holland, Italy, and South Africa, and has attended and presented at the International Conferences on AIDS in Amsterdam, Durban, and Barcelona.

PRIYA BERY is the Policy Officer at the Global Business Coalition on HIV/AIDS. In this capacity she provides strategic guidance on the GBC policy agenda and leads research efforts in the area of economic impact analysis and partnership building for the business sector with the HIV/AIDS and corporate social responsibility communities and national governments. Prior to joining the GBC, she researched issues in international health policy and political economy in relation to access to treatment and pharmaceutical pricing at the Harvard School of Public Health. Leading up to her post-graduate study she served as a Legislative Correspondent for U.S. Senator Carl Levin, where she handled health and environmental issues.

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She also spent one year in India conducting field work in maternal and child health and maternal mortality for various community-based organizations.

HOLLY BURKHALTER is the Advocacy Director of Physicians for Human Rights, a Boston-based human rights organization that works to promote health by protecting human rights. (She is based in the organization's Washington office.) Prior to joining PHR in March 1997, she was affiliated with Human Rights Watch for 14 years as that organization's Advocacy Director and director of its Washington office. Before joining Human Rights Watch, she staffed the House Foreign Affairs Subcommittee on Human Rights and International Organizations and, before that, worked for Representative (now Senator) Tom Harkin. She is a frequent witness before Congress, publishes articles and opinion pieces regularly, and writes a regular column on human rights law and policy for Legal Times. Her most recent publication is a chapter in the September 2000 Council on Foreign Relations publication, Humanitarian Intervention, Crafting a Workable Doctrine.

DR. PAUL DeLAY is the senior adviser on HIV/AIDS at the U.S. Agency for International Development (USAID). He is a medical doctor with training and experience in family practice, infectious and tropical diseases, epidemiology, preventive medicine and public health. Prior to his appointment as senior adviser, he served as the director of USAID’s HIV/AIDS division from 1997-2002. He first joined the office in 1991 as a Senior Technical Advisor focusing on sexually transmitted disease prevention and management, HIV epidemiologic surveillance, simulation modeling to assess impact, evaluation methodologies, and developing USAID’s strategy to support HIV-related care. Before joining USAID, he practiced clinical medicine for 13 years, including eight years as Medical Director of Refugee Medical Services for the City of San Francisco. In 1988, he joined the World Health Organization’s Global Programme on AIDS, and has worked in over 20 developing countries in all regions of the globe.

MARK DEL MONTE is the Director of Public Affairs for AIDS Alliance for Children, Youth and Families. AIDS Alliance represents the needs of women, children, youth and families infected and affected by HIV. Mark develops policy and directs AIDS Alliance's federal advocacy activities across the spectrum of HIV-related issues including HIV prevention, research, treatment and care.  In addition, he directs an AIDS Alliance youth HIV prevention program and mother to child transmission reduction programs. Prior to moving to Washington he practiced law, providing free legal services to HIV-positive women, children and youth in northern California.

LAURA FLEGEL is the Director of Legal Services for Whitman-Walker Clinic, where she has worked as an attorney since 1992, when she started Whitman-Walker Clinic's first legal program at the Northern Virginia office and was at that time the only lawyer in the Commonwealth of Virginia working full-time on HIV/AIDS law issues. Before coming to WWC Laura worked for seven years at the United States Department of Labor and for a year in private practice for a union-side labor law firm. RONALD L. JOHNSON is Public Affairs and Education Manager at the National Minority AIDS Council (NMAC), where he is responsible for curricula development for all training conducted within the Government Relations and Public Policy Division. He also is responsible for the education of NMAC’s constituents on issues related to HIV/AIDS for racial and ethnic minority communities. His current projects include co-facilitation of the HIV/AIDS Stigma Project and leadership and advocacy training for the Gay Men of Color Policy Initiative. He has more than a decade of professional experience in the HIV/AIDS arena, including as an Early Intervention Consultant with the Florida Department of Health, where he was responsible for training and certifying all counselors conducting HIV testing in Broward County.

JENNIFER KATES is Senior Program Officer, HIV/AIDS Policy, at The Kaiser Family Foundation. She manages the Foundation’s HIV-related policy projects, conducts policy research and analysis, and provides HIV/AIDS expertise to the Foundation’s public health information campaigns and media partnerships, and to numerous external stakeholders including the media, policymakers, and community members. Her work focuses on issues of health care coverage, financing, access to care, and prevention, particularly for those increasingly affected by the epidemic including women, people of color, and young people. In addition, she has conducted a number of projects related to global and domestic spending on HIV/AIDS. She manages the Foundation’s ongoing Capitol Hill Briefing Series on HIV/AIDS, as well as its National HIV/AIDS Policy Initiative, a joint initiative of the Kaiser Family Foundation and the Ford Foundation.

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Prior to joining the Foundation, she was a Senior Associate with The Lewin Group, where she focused on HIV/AIDS policy, strategic planning/health systems analysis, and health care for vulnerable populations.

SOPHIA MUKASA MONICO is the Senior AIDS Program Officer at the Global Health Council, based in Washington, DC, where she coordinates Global AIDS Program activities, including outreach to the policy community, networking with PVOs, domestic and international NGOs, the private sector and government agencies, and manages and coordinates fundraising initiatives. A native of Uganda, her experience in the public health field and, specifically, in the arena of HIV/AIDS work, is significant. She has been the CEO of The AIDS Support Organization (TASO) and served as the HIV Vaccine Project Coordinator for the International Council of AIDS Service Organizations (ICASO) in Toronto, Canada. She received her bachelors of law from Makere University in Kampala, Uganda and her doctorate in modern languages and literature from the University of Bologna in Italy.

JULIANA I. OYEGUN is World Bank Group Director for Diversity and recently was Special Advisor for Gender Equity with the United Nations High Commissioner for Refugees in Geneva. Until December 1999, she was Deputy Vice Chancellor/Executive Director for Human Resources & Services at the University of the Western Cape, South Africa and since 1996 has been a university lecturer and researcher in South Africa. From 1977 to 1993, she was a labor & corporate law practitioner in Nigeria. Since 1987, she has gained national, African, and Commonwealth experience in women in management & human rights training, including work in Ethiopia, Nigeria, the Gambia, and Zimbabwe, and has been a consultant on diversity (including gender, race/ethnicity, sexual orientation, and disabilities) and organizational change to the Commonwealth Secretariat, Nigerian and South African governments.

WM. LANE PORTER, JD, MPH, is the International Health Law and Human Rights Advisor for The Futures Group International and its POLICY Project. Funded by the U.S. Agency for International Development (USAID) and active in 29 developing countries, POLICY facilitates development of laws and other policies that support provision of high quality HIV/AIDS and reproductive health services. Mr. Porter is chair of POLICY’s human rights working group and provides law and human rights technical assistance for POLICY’s HIV/AIDS and Reproductive Health activities at the global level and in the field. In addition to being a member of the ABA AIDS Coordinating Committee, he is Chair, International Legal Exchange (ILEX) Committee, ABA Section of International Law and Practice (SILP); a member of the ABA Special Committee on Bioethics and the Law; and SILP liaison to the ABA Standing Committee on Substance Abuse. In 1992-93, he was law and human rights officer for the Global Programme on AIDS (now UNAIDS) in Geneva.

NATASHA SAKOLSKY is Director of the Global AIDS Technical Assistance Program of the National Alliance of State and Territorial AIDS Directors (NASTAD) in Washington, DC, where she created and administered $2.1 million program to provide international technical assistance in HIV/AIDS policy and program development globally in partnership with the Centers for Disease Control and Prevention Global AIDS Program. She also works on partnership and coordination with USAID and implementing partners based in the U.S. and in project countries, as well as member relations and partnership with other U.S. national non-profits and oversight of TA materials development, including training manuals and toolkits.

REBECCA SCHLEIFER is a Researcher with the HIV/AIDS and Human Rights Program at Human Rights Watch. She previously worked as an attorney and health educator with the Migrant Farmworker Justice Project in Belle Glade, Florida and the farmworker division of Evergreen Legal Services in Sunnyside, Washington, where she represented farmworkers in major litigation involving wages and working conditions and organized workshops for farmworkers on HIV/AIDS prevention and on protection from pesticide exposure. Ms. Schleifer also clerked for First Circuit Court of Appeals Judge Frank M. Coffin.

ROBERT E. STEIN (invited), Immediate Past Chair of the ABA AIDS Coordinating Committee, is a mediator, arbitrator and attorney in Washington D.C. He mediates and arbitrates disputes in the health care area and counsels clients seeking more effective means of settling health disputes, including developing grievance procedures and providing services to settle disputes. He has arbitrated and mediated school and workplace disputes involving HIV infected students and employees, worked under contract with the Vaccine Research and Development Branch of NIAID/NIH, and now works with Merck on issues relating to vaccine liability, social harm and informed consent. He has consulted with HRSA in its developing

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Ryan White Act grievance procedures and has developed policies on disabilities, including AIDS in the workplace and other HIV-related legal matters. He also chairs the Editorial Advisory Board of the AIDSReference Guide.

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Stigma and Discrimination—Addressing the Challenges of the U.S. Epidemic

AIDS Action is the only national non-governmental organization dedicated solely to advocating for effective and sound HIV/AIDS policy and funding for HIV/AIDS care and services, medical research, and effective prevention. Representing community-based organizations, local health departments and direct service providers, AIDS Action is the national voice on AIDS—addressing the broad needs of people at risk and living with HIV/AIDS and the organizations that serve them. At the heart of this mission is understanding and representing the social support needs, justice issues and healthcare challenges of all people living with HIV, regardless of mode of transmission.

AIDS Action is committed to advocating for people affected by HIV/AIDS until it’s over—until no more people become infected with HIV, until people living with HIV have the care and support they need, and until a cure is found.

At the root of our work is the notion that the psychological, social, and economic impact of HIV/AIDS is unique to each individual. Social isolation, discrimination, anxiety, depression, concern about body image, loss of jobs and other financial repercussions, and confrontation with one’s own mortality are among the critical issues challenging persons living with HIV/AIDS. Additionally, many individuals living with HIV/AIDS have endured long-term social isolation, violence, victimization and violation of their basic human rights.

AIDS Action, comprised of the AIDS Action Council and the AIDS Action Foundation, addresses these unique concerns though policy development, government affairs and lobbying, education, media outreach and support for grassroots advocacy. The Council advocates and lobbies on the most current legislative, administrative and social programs and policies being formulated in the nation’s capital and across the country. The Foundation develops, compiles and shares expert up-to-date information on statistical, research and policy trends within HIV/AIDS, as well as develops consumer-friendly and technical assistance guides for organizations and individuals.

AIDS Action focuses its resources in the following areas:

Policy Development—AIDS Action works with its community-based members to develop policy recommendations that supports the interest of people living with and impacted by HIV/AIDS in local communities. These policy recommendations include addressing the unique concerns of diverse communities. Policy development at AIDS Action includes the perspective all people living with HIV have an inherent right to services regardless of their race, gender, religious affiliation, sexual orientation and mode of transition. Access to quality health care is essential and forms the basis of AIDS Action’s advocacy agenda.

Government Affairs and Lobbying—AIDS Action’s government affairs team actively advocates policy and funding recommendations to Members of Congress, congressional and committee staff, the White House, and key Administration officials and agencies. At the heart of these efforts includes the defeat of legislation and policies that institutionalize homophobia, racism and classism. At the same time, AIDS Action’s government affairs team educates key policy decision makers about the realities of living with HIV and the impact that programs have on individuals. AIDS Action co-founded and convenes National Organizations Responding to AIDS (NORA) a diverse consortium of over 175 national organizations impacted by the HIV epidemic. Through this collective voice, the needs and concerns of people living with HIV, their families, friends and employers shape national legislation and programs addressing HIV/AIDS.

Grassroots Advocacy—Ensuring that the voice of those individuals impacted by HIV/AIDS is heard is one of the most important aspects of AIDS Action’s work and is key to addressing stigma and

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discrimination. Providing individuals with the chance to speak out against the social injustices and discrimination, as well as the valuable programs they depend upon, ensures that individuals impacted by HIV are heard. AIDS Action communicates with its grassroots network of HIV/AIDS organizations nationwide on a regular basis to ensure that a strong and strategic community voice is provided for AIDS policy. AIDS Action’s participation in AIDS Watch, the annual program that brings grassroots advocates and people living with HIV to Washington, DC to meet with elected officials, helps to further enable those impacted to have their voice heard.

Media Outreach—AIDS Action works to educate and inform the nation’s media about policy issues impacting those at risk and living with HIV/AIDS. These efforts include the development and distribution of public service announcements that ensure that individuals have proper education and understanding about their risk of contracting HIV. Additionally, these messages serve to combat individual stigma that casual contact with people living with HIV/AIDS can transmit the virus. AIDS Action also produces media friendly guides to inform all Americans about the realities of HIV/AIDS and helps parents, educators and other individuals talk to youth and other at risk populations about HIV in an open and honest dialogue.

Addressing the Stigma and Discrimination as part of a National Agenda to end HIV.

In the twenty-one years that the United States has been responding to the HIV/AIDS epidemic, our nation has made significant strides in caring for and treating individuals living with HIV and AIDS—both at home and abroad. Notwithstanding, oftentimes progress gets in the way of our ultimate successes. With the introduction of life-prolonging antiretroviral therapies has come a mounting complacency about the threat of HIV. The stigmas and discrimination associated with AIDS two decades ago still plague those living with the disease today. Additionally, America’s system of HIV/AIDS care is a complex patchwork of programs ad unpredictable financial mechanisms created to care for those dying of AIDS, not living with HIV.

AIDS Action believes that every American—community leaders, Members of Congress, business owners, immigrants, religious leaders, mayors, media, the President, labor, state legislators, educators and non-governmental organizations—can impact the fight against HIV/AIDS. To this end, political, religious and social differences must be set aside to collectively engage in a national strategy to end HIV infection in the United States, and to build a stronger, more accessible system of care and quality of life for those living with HIV. Through this effort to end the HIV epidemic, AIDS Action holds the following principles around stigma and discrimination.

Every American must commit to provide support and compassion to everyone affected, living with, or believed to be living with HIV or AIDS.

Community, faith-based, labor, education and youth organizations must play a leadership role in educating every American about HIV/AIDS.

Every parent, caregiver, adult and educator must commit to talking to young people about HIV/AIDS in an open, honest and truthful way.

Community and local organizations must play a significant role in empowering young people with information about protecting themselves from HIV/AIDS.

Every corporation and small business in America must pledge not to discriminate in the workplace against persons living with HIV or AIDS, but instead, must provide them with a work environment that offers support and resources, including healthcare coverage, to address their needs.

Governors, state legislators, county commissioners, mayors and other state and local officials must speak out against stigma, homophobia and other forms of HIV-related discrimination.

State and local boards of education must ensure that science-driven HIV/AIDS prevention education takes place in every public and private school in the nation—removing the content restrictions and other barriers to effective HIV/AIDS prevention messages.

To ensure all American are comfortable seeking HIV testing, care and treatment, states must increase confidentiality protections and laws as HIV surveillance is implemented across the nation.

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The President, other Senior Administration officials and Members of Congress must speak out and condemn HIV-related discrimination and prejudice based upon race, ethnicity and sexual orientation that interfere with our fight to end the HIV/AIDS epidemic.

Congress and the Administration must act swiftly to remove current and discriminatory immigration laws that prohibit those living with HIV and AIDS from entering.

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Stigma, Discrimination, and The Future of HIV/AIDS Law, Policy and Advocacy

The battle against HIV includes advocating for adequate resources to prevent and treat the infection, educating the public and fighting against long-held misperceptions about people who are living with HIV. More than 20 years into the HIV/AIDS epidemic, HIV-related stigma persists and battling discrimination against those living with the virus remains a critical component of battling the disease.

HIV in most cases is behaviorally acquired and infects vulnerable communities. Sexual transmission and injection drug use are the top methods of infection. The epidemic still most harshly affects men who have sex with men, and today the majority of those are young men and men of color. For much of the last decade the disease has shifted toward lower-income minority communities. These communities are often alienated from the mainstream and suffer from lack of resources, including substandard education and inadequate access to health care and other basic services. In short, communities most harshly affected by HIV already face some level of discrimination because of sexual orientation, race or social status. Any strategy to fight the HIV/AIDS epidemic, must address the issues of stigma and discrimination.

AIDS Alliance is committed to fighting HIV, educating the administration and policy makers about the epidemic, empowering consumers to be advocates for themselves, and ensuring that the rights of those living with HIV are protected. AIDS Alliance’s specific focus is the needs of children, youth and women living with or affected by HIV and AIDS. AIDS Alliance has more than 600 member clinics and organizations around the country. The clinics receive funding from Title IV of the Ryan White CARE Act, which focuses on a family-centered model of care. Because HIV doesn’t just infect a person but a family, Title IV-funded programs provide a coordinated system of care that addresses the multiple needs of people living with HIV, including case management, mental health and substance use treatment, child care and other supportive services.

Women

In the early days of the AIDS epidemic, women made up a small minority of cases. Today, about one-third of all new infections are among women, and that number continues to increase. Women of color make up 84 percent of all HIV cases among women, with black women making up about 63 percent. Often these are lower-income women who face a myriad of other social challenges that can include, poverty, depression, domestic violence, unstable employment and unstable living conditions. For many such women, their own health will not be the top priority if they are forced to choose between taking care of themselves or getting their children, spouses, partners, or other family members the care they need.

Programs serving women living with HIV are most successful when they are family-centered, offering women care and support that meets their self-identified needs within the context of their families—care that reflects their concerns, priorities and choices. For women living with HIV disease, family-centered care is also culturally competent and comprehensive. Culturally competent, comprehensive care encompasses primary care, reproductive health care, mental health care, substance use treatment, housing and family support services such as transportation, permanency planning and childcare.

A key component of battling stigma and discrimination among HIV positive women is recognizing and empowering women’s voice. Listening to women is the first step to empowerment. Women in high-risk circumstances typically are not out in force publicizing how HIV is affecting them. Beginning with fundamental, structural issues first—such as housing or family strengthening—often indirectly addresses other issues as well, such as lack of social support. Providing adequate support for basic needs is the first step to empowering healthy choices, stronger voices and greater advocacy.

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Pregnant Women

Thanks to advances in medicine, pregnant women living with HIV can receive therapies that drastically reduce the odds that their baby will be born with HIV. The medical ability to significantly reduce the chances of mother-to-child HIV transmission creates a social imperative to identify HIV-positive pregnant women as a means to protecting the health of the baby. This imperative has led some policy makers and public health advocates to conclude that mandatory testing of all pregnant women for HIV is the appropriate policy response.

With very few exceptions, Americans cannot be tested for HIV against their will, but instead must be counseled and provide fully informed consent. Proponents of mandatory testing would argue these rights should be denied to pregnant women in the name of protecting the health of the child. The mother’s right to decline testing is eclipsed by the potential benefits of treatment for the infant.

Mandatory or coercive testing, however, may prevent women in high-risk circumstances from seeking or participating in prenatal care thereby alienating women from the health care system. Mandatory testing also fails to acknowledge the right of women to choose whether they want an HIV test and presumes that mothers do not want to protect the health and well being of their newborns.

Over zealousness in efforts to test pregnant women is not the right approach. Instead, AIDS Alliance for Children, Youth & Families supports educating medical professionals who treat pregnant women to counsel women about HIV much in the same way they counsel and educate them about the importance of nutrition. Voluntary HIV testing and counseling of pregnant women has already significantly reduced the perinatal HIV infection rate in this country. Prenatal counseling and voluntary testing has largely been effective in making most pregnant women aware of their HIV status. CDC data indicates that 93% of HIV-positive pregnant women knew their status when giving birth.

Youth

Young people are this country’s most valuable asset. With that in mind, AIDS Alliance is committed to reducing HIV infection among youth. Today, half of all new HIV infections are among young people ages 13 to 24. By twelfth grade, 65% of American youth are sexually active. Each year 3 million youth contract an STD. At least half of HIV infections among young men occur through sex with other men. Youth who drop out of school, are sexually abused, run away from home, are incarcerated, are in other out-of-home residential placements, or are homeless remain at high risk for HIV and AIDS. This data calls for providing youth with education about HIV prevention and the tools they need to protect themselves against HIV.

Prevention science has identified programs that can reduce risk behavior among youth, but these programs are not offered in most schools and communities. With an emphasis on communication, negotiation and refusal skills, they state clearly that abstinence is important, and also provide information about condoms and other contraceptives. Other effective programs offer individualized counseling to high-risk youth, or use outreach workers to deliver prevention messages.

All young people need access to proven information to protect themselves from HIV infection. The youth at highest risk of HIV infection need additional help. They are confronted with poverty, racism, sexism and homophobia. Many are out of school, lack access to health care, and are exploited by adults. Youth at highest risk urgently need school and community based prevention programs that address the stigma, discrimination and other daunting challenges they face.

Unfortunately there is a growing movement to politicize sex education for youth. Ideology-based programs are now gaining support and resources. The federal government now provides more than $130 million per year for abstinence-only sexuality education under three programs, and President Bush has proposed increasing funding for one program by 82 percent. Abstinence-only education programs teach that the only acceptable venue for sexual activity is marriage. Any discussion of condoms or contraceptives focuses exclusively on failure rates. Such programs fail to acknowledge the needs of young people who identify as gay or lesbian and leave out high-risk youth.

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The federal government should ensure that adequate resources are targeted to proven youth-focused HIV prevention programs. Schools and other prevention service providers should adhere to the best practices identified by prevention science and those receiving new funding should be held strictly accountable for such adherence. Priority for funding abstinence-only programs should be given to programs with demonstrated effectiveness in decreasing behavioral risk of infection with HIV and other STDs, and of unintended pregnancies.

The HOPE Campaign

In response to the HIV epidemic among youth, AIDS Alliance started the HOPE (Health, Opportunities, Prevention & Education) Campaign for Youth in the fall of 2001. The HOPE Campaign has three important goals: (1) train a new generation of youth and HIV prevention leaders; (2) provide technical assistance to community-based organizations serving youth; and (3) serve as a national policy forum to exchange ideas on ways to support and improve HIV prevention for youth. In 2002, these goals are supported through projects funded by the Centers for Disease Control & Prevention (CDC) and the Ford Foundation.

Consumer Empowerment

The most compelling voices in the fight against HIV are of those who are living with HIV. More than two years ago, AIDS Alliance’s Education and Training Center launched a Consumer Initiative to greatly expand our services for youth, women and families. As part of our consumer initiative, AIDS Alliance provides year-round training and support to a national group of consumers, who, in turn, provide self-empowerment training to their peers. Funded by the Health Resources and Services Administration (HRSA), these consumer-led trainings help young people, women and families to successfully navigate the HIV/AIDS care system, build partnerships with providers, and get involved in program planning, implementation and evaluation.

The Future of Law and Policy

More than 20 years into the HIV/AIDS epidemic, and we have made significant strides in treating people with HIV, moving consumers to advocate for themselves, and creating dialogue about next steps in fighting the epidemic. But much remains to be done.

Of the roughly 1 million people in this country living with HIV, only one third are in care. The remaining two-thirds either don’t know their status or know their status but aren’t accessing care.

Although HIV infection rates have been held down to forty thousand for several years—it is forty thousand too many. Youth and vulnerable populations remain at high risk. Prevention programs are attacked undermined by ideological or political battles.

Overall, HIV positive people are living longer but face new health challenges, drug side effects and failure, and may struggle with other health conditions. HIV medications are expensive, AIDS Drug Assistance Programs (ADAP’s) and Medicaid face funding shortfalls.

Ryan White CARE Act funding programs face flat funding with increasing caseloads and ever-higher costs of care.

Legal protections for people with HIV and other disabilities are being eroded. The ADA is under attack in the courts.

 

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Summary for World AIDS Day 2002 Roundtable on Stigma, Discrimination, and the Future of HIV/AIDS Law, Policy, and Advocacy

The world today faces unprecedented challenges to global security, stability and individual rights. These threats are not limited to conventional military warfare. We are faced with complex and diverse challenges in the form of terrorism, organized crime and civil conflict with increasing numbers of people forced to flee war-torn regions. Perhaps the greatest threat of all in the long-term, comes from a small virus, HIV. With over 40 million people infected with HIV globally, the HIV/AIDS epidemic is the worst health crisis in at least six hundred years, perhaps the worst in history.

But HIV/AIDS is even more than a historic health crisis. It is also a huge threat to global security, stability and economic growth. Beyond the individual suffering, the epidemic threatens the very fabric of society, destroying families and livelihoods. For companies operating in heavily affected regions, HIV/AIDS will have major consequences on profitability and productivity. In southern Africa, where over 28 million people are living with HIV/AIDS, women continue to be infected at disproportionately high rates and often lack legal protection against discrimination.

One of the major lessons of the last 20 years is that even in the absence of an effective vaccine, we are not powerless to stop the spread of this epidemic. But the massive mobilization of every section of society is necessary. We must harness the expertise not only of doctors, politicians and development workers, but of entire communities, including religious and business leaders. Critically, we must also uphold the human rights of individuals who are living with the virus or who may be at risk of infection, or else the epidemic is driven underground, adding fuel to the fire of its spread.

Role of Business

Non-governmental organizations have long demonstrated heroic leadership in the fight against AIDS through commitment to improving the health and human dignity of poor and vulnerable communities around the world. The business sector also has a significant contribution to make, although the sector as a whole has been extremely slow to respond. Yet it is in both its and society’s interests that business’ ability for rapid innovation and effective management be brought to bear on AIDS. Businesses not only have a responsibility to act, but an opportunity to play a crucial role in the global fight against the epidemic, particularly within their own workplaces. In many countries workplace awareness and prevention programs will be the only source of accurate information employees will have about HIV/AIDS. Company leadership in establishing non-discriminatory workplace policies, distributing condoms, providing voluntary counseling and testing and access to care and treatment sends a strong message to governments and other sectors. The business sector also has a unique opportunity to reach beyond the workplace and apply their core strengths in marketing and communication, business administration, logistics and distribution, and information exchange to the fight against the epidemic in local communities and globally.

Business and Non-discrimination

Perhaps the greatest contribution business leaders can make is to tackle head on the stigma and discrimination that has enabled this virus to spread, often unchecked, over the last twenty years. Company-wide programs should be developed to ensure there is no discrimination against employees on the basis of real or perceived HIV status, and to ensure employee confidentiality. Many such company policies have first been developed by subsidiaries in heavily affected regions before being rolled out company-wide. While having the general aim of tackling HIV/AIDS related discrimination, they need to be adapted to comply with relevant national legislation. To be effective, HIV non-discriminatory policies need toe active endorsement of senior management centrally, regionally and nationally. Pre-employment screening for HIV should be recognized as discriminatory and counterproductive. As well as fostering a more supportive workplace environment, the adoption of non-discriminatory policies is a clear public commitment that

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helps to counter the fear and stigma that still typify many communities’ responses to the epidemic. The involvement of trade unions and employee representatives in the formulation of policies has been important in ensuring employee support.

THE GLOBAL BUSINESS COALITION ON HIV/AIDS

Mission

The Global Business Coalition on HIV/AIDS (GBC), is a rapidly-expanding alliance of international businesses dedicated to combating the AIDS epidemic through the business sector’s unique skills and expertise. The GBC believes that business can respond in a variety of ways:

Implementing prevention and care programs and policies for employees and immediate communities

Bringing business’ core strengths of creativity and flexibility to improve the reach and effectiveness of AIDS programs

Leadership and Advocacy by business leaders, lobbying for greater action and partnerships with governments and civil society

Under its President and Chief Executive Officer, Richard Holbrooke, former US Ambassador to the United Nations; its Chairman, Juergen Schrempp, Chairman of the Board of Management, DaimlerChrysler AG and its Executive Director, Ben Plumley – the GBC is the only business-led organization focusing on HIV/AIDS and addressing critical issues related to the business response to the epidemic in all its variety. The GBC is committed to increasing significantly the number of companies committed to tackling AIDS, and to making business a valued partner in the global efforts against the epidemic.

The Coalition believes AIDS should be a core business issue for every company, particularly those with interests in heavily affected countries. In many countries, workplace awareness and prevention programs will be the only source of accurate information employees will have about HIV/AIDS. In addition, companies have an unparalleled opportunity to tackle head on the stigma and discrimination that has enabled this virus to spread, often unchecked, over the last twenty years. With the support of global leaders in government, business and civil society, the GBC promotes the broad range of valuable contributions business can make, through policy development and identifying examples of good practice.

The Impact of HIV/AIDS on Business

HIV/AIDS is the greatest threat to global security and prosperity - There is not one country that remains untouched by AIDS. As it reaches epidemic proportions in heavily affected regions, it devastates economies and markets. For companies operating in these regions, HIV/AIDS will have major consequences on profitability and productivity. With no cure available, only the mobilization of every section of society will stem the tide of this epidemic. National governments, the United Nations, civil society and the business sector have to respond decisively – collaborating on innovative comprehensive AIDS prevention and treatment strategies.

HIV/AIDS Affects Productivity

In countries heavily affected by the epidemic, companies report declines in productivity caused by:

Increased absenteeism – from sickness and caring for ill family members, and preparing for and attending funerals of family and friends.

Staff turnover – due to death and illness. Operations increasingly focused on training new employees rather than on company outputs.

Lower morale – as a result of illness, suffering and loss of colleagues, friends and family. Disrupts continuity in the workplace and the community.

HIV/AIDS Affects Profitability

The epidemic has a clear impact on a company’s profits through direct costs and declining economies:

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Increased costs – with increasing number of employees falling sick, companies have to bear the rising costs of health insurance, sick leave and funeral benefits, as well as recruitment and training of new staff.

Declining markets – HIV/AIDS threatens economic prosperity by putting national economies at risk. Increasing impact of AIDS on business deters investment and decreases output for foreign exchange.

Threats to consumer base – overall demand for goods and services decreases and companies are forced to be less dependent on their consumer base. Households are faced with increased health expenditures and risk losing their sole income earner.

Goals

The GBC’s first goal is to increase significantly the number of companies publicly committed to HIV/AIDS, through expanded membership of the GBC. In the last twelve months, membership has increased from 17 to over 90 companies.

Secondly, the GBC is identifying opportunities and working with individual companies to improve business sector AIDS programs – both in the workplace and in the broader community. To achieve this, the GBC has embarked on an ambitious program of policy leadership and advocacy to increase dramatically the involvement of the business sector globally and nationally, namely:

Increasing Business Action in the Workplace & Implementing Workplace Programs

The GBC’s strategy involves both policy advocacy with business leaders to convince them to act, and the identification of workplace “best practices” to help companies implement proven comprehensive HIV workplace protocols and practices.

Increasing Business Action in the Community

The GBC reviews the broad range of programs and partnerships business can bring to stem the tide of the AIDS epidemic and draws company examples from the variety of industrial sectors where business has worked in partnership with governments and civil society in response to HIV/AIDS and other social issues.

Increasing National Business Involvement

A critical aspect of the GBC’s work is to promote greater business action in countries heavily affected by the epidemic. The GBC assists by providing technical advice and advocacy support to national business organizations and through high-profile summits of business, political and civil society leaders. Formal partnerships have been developed with leading business associations in Botswana, Kenya, India and South Africa; including national HIV and business coalitions and chambers of commerce.

Information Exchange The GBC website www.businessfightsaids.org is the only global website dedicated to providing the latest information on AIDS relevant to businesses. The GBC also provides a range of services to member companies and other relevant partners by enhancing availability of HIV/AIDS information, expanding access to information technology and strengthening community networks.

GBC Membership

Membership is open to companies committed to fighting the AIDS epidemic. The companies engaged with the GBC are diverse and represent different workforces, industries and geographical regions, united in their common commitment to respond to the global HIV/AIDS epidemic. Annual membership fees of $25,000 (US) are paid by member companies to support the GBC. Members collaborate in the GBC’s workplan, share effective workplace and community outreach programs, and greater good corporate citizenship on HIV/AIDS. A complete member listing can be found on the GBC website.

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Membership Services

Member companies benefit from:

timely and relevant publications, policy statements, and position papers summarized in concise, business-friendly language;

networking opportunities among companies, governments and high-level international development decision makers;

a showcase for individual member companies and initiatives, through broadcast, print and other media; participation in agenda-setting summits and special events.

Membership Roles and Responsibilities

Members of the Global Business Coalition on HIV/AIDS are asked to:

advocate for HIV/AIDS as a core business issue; promote good corporate citizenship, and best practices; share effective workplace programs and policies among Coalition members, decision-makers and

policy influencers; and in broadcast, print and other media.

Governance

The GBC is registered as a non-profit 501c3 organization in the United States, with the secretariat based in New York. Besides membership fees, the GBC is supported by the Bill and Melinda Gates Foundation, the Open Society Institute, and the United Nations Foundation. Legal services are provided by Simpson Thacher & Bartlett.

For more information on the Coalition, please contact:

Global Business Coalition on HIV/AIDS1515 Broadway, 45th floorNew York, NY 10036USATel: +1-212-846-5893Fax: +1-212-846-1939Website: www.businessfightsaids.org

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Global Health Council

The Global Health Council is the world's largest membership alliance dedicated to saving lives by improving health throughout the world.

Our diverse membership is comprised of health-care professionals and organizations that include NGOs, foundations, corporations, government agencies and academic institutions that work to ensure global health for all.

Our Mission

Our Mission is to promote better health around the world by assisting all who work for improvement and equity in global health to secure the information and resources they need to work effectively.

Toward this end, we will serve our members through our work in advocacy, building alliances, and communicating experiences and best practices.

Each year, all around the world, tens of millions of human beings die needlessly, and hundreds of millions of lives are ravaged by ill health.

The world has the resources to greatly reduce this loss and suffering. When it comes to global health, there is no them, only us.

Plan of Action

The Global Health Council fulfills its mission to further the cause of improving health equity worldwide through Advocacy, Building alliances, and Communicating best practices and experiences.

Advocacy is a critical part of our agenda to galvanize forces to improve global health. Our strategy is to enable health practitioners, advocates, policymakers, teachers and students, here and abroad, to have one voice against the threat of diseases that take their toll on all aspects of our lives, be it economic, political or personal.

Building alliances gives our members from around the world the means to speak in a common language and share their successes and frustrations. It allows our community to discuss the commonalities of challenges we face in our work to make the world a healthier place.

Communicating best practices is our opportunity to learn from and share the work we've accomplished, not only with our members but also with the world of health practitioners at large. Our work is accomplished, not only by making the world a healthier place to live, but also by giving our work a voice that will resonate to all corners of the globe.

Key Issues

To achieve our mission, the Council brings together the global actors in health around seven key issues which have been identified as critical to improving health and promoting equity. Directing our common efforts politically and practically will dramatically reduce disease and death in all countries. The Council's key issues:

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Child Health and Nutrition Reproductive Health Maternal Health HIV/AIDS Infectious Diseases Disaster and Refugee Health Health Systems

Our History

The Global Health Council, formerly the National Council of International Health, is a U.S.-based, nonprofit membership organization that was created in 1972 to identify priority world health problems and to report on them to the U.S. public, legislators, international and domestic government agencies, academic institutions and the global health community. Dr. Nils Daulaire, the Global Health Council's president and CEO, was recruited in 1998 to transform the Global Health Council into a dynamic organization that puts global health squarely where it belongs: a priority for everyone, rich and poor alike.

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Human Rights Watch

Addressing the Human Rights Dimensions of HIV/AIDS-related Stigma and Discrimination

UNAIDS has recognized discrimination as “one of the most significant human rights abuses in the area of HIV/AIDS.”1 HIV/AIDS-related stigma and discrimination takes many forms, including discrimination against people living with HIV/AIDS, their family members and caretakers, and discrimination against members of marginalized groups at high risk of HIV infection, and extending even to those who reach out to individuals affected by HIV/AIDS. HIV/AIDS-related stigma and discrimination are at the core of a wide range of human rights abuses that fuel the epidemic. Addressing this complex of human rights abuses is an essential part of the battle against AIDS.

Discrimination and stigma based on HIV status are particularly virulent forms of discrimination not least because it is based on multiple hatreds. In too many places in the world, HIV/AIDS is associated in the public mind with sex workers, men who have sex with men, injecting drug users, prisoners, migrant workers and others who have been relegated to the margins of society and have suffered the injustice of a long history of hatred and social disdain. HIV-related discrimination is a galvanization of all of these hatreds, added to the “original” discrimination that is born of the fear of a horrible and lethal illness. The stigma and fear associated with the illness make people seek scapegoats, and persons from the “high-risk groups” serve this purpose only too well, coming as they have from a history of social, political and economic marginalization.

Many states have taken positive steps to protect the rights of people who live with or who are perceived to live with HIV/AIDS, enacting laws or policies that bar discrimination at work, at school, in health care facilities and in state institutions such as prisons. Protecting the rights of those infected—and national recognition of the importance of doing so—is crucial in fighting the illness. But it is equally important that national responses to HIV/AIDS also focus on the protection of the rights of those at risk. In India and in the former Soviet Union, both places where the epidemic is fast growing, Human Rights Watch has documented systematic and widespread police abuse and other state persecution and harassment of men who have sex with men, sex workers, and drug users, all individuals at risk of HIV. These abuses are an assault on the human rights of all of these individuals, which alone is reason to end them. But discrimination also spreads the disease, by discouraging at-risk individuals from seeking any HIV-related information or treatment, and must be stopped for the epidemic to be contained.

HIV/AIDS has intensified the existing discrimination in the world against sex workers, drug users and men who have sex with men. Members of these groups are commonly considered as people engaged in socially unacceptable (and sometimes illegal) actions, and not considered as individuals in their own right. In many countries, women in prostitution, drug users and men who have sex with men are commonly associated in the public mind with HIV/AIDS, which in turn has reinforced and justified their marginalization and discrimination against them. The crisis of HIV/AIDS has probably hardened opposition to the repeal of inhumane and antiquated sodomy laws and has strengthened support for repressive and ineffective drug laws that by their terms violate the rights of users. Fear and stigma enveloping the AIDS crisis have contributed to repression of rational discussion of and education on sex and sexual orientation, only serving to exacerbate existing discrimination against already marginalized groups.

In the U.S., for example, federal abstinence-only programs teach that nonmarital sex may be psychologically and physically harmful; and many state laws or policies require HIV/AIDS and sexuality education programs to teach that homosexuality is unacceptable and illegal, or bar discussion of

1 UNAIDS’ Handbook for Legislators on HIV/AIDS, Law and Human Rights: Action to Combat HIV/AIDS in View of its Devastating Human, Economic and Social Impact (UNAIDS: Geneva, 1999), p. 64.

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homosexuality altogether except in the context of sexually transmitted diseases. 2 Drug users seeking to use needle exchange are still subject to arrest for drug possession for the small quantity of drugs that may remain in needles they carry, or for possessing needles that they legally purchase through state sponsored programs.3 These types of laws and policies have made it easier to regard sex workers, men who have sex with men and drug users as “vectors” of disease rather than seeing them as the essential allies in the anti-AIDS struggle that they are.

Discrimination and stigma associated with HIV/AIDS has had the particularly dangerous quality of spilling over onto those who reach out to persons at high risk. There is widespread recognition that the most effective and indeed in some cases the only possible AIDS educators for members of marginalized groups, such as men who have sex with men, women in prostitution and injecting drug users, are their peers. That is, women in prostitution who are trained and informed in HIV/AIDS are the most effective educators for raising awareness about HIV/AIDS prevention among other women in prostitution, and similarly for men who have sex with men and injecting drug users.

All too often, peer educators and others who reach out to marginalized groups are held in the same deep disregard as the individuals with whom they work, and subjected to violations of their human rights at the hands of the government. In India, for example, Human Rights Watch has documented numerous cases of police harassment of HIV/AIDS prevention workers who work with women in prostitution and men who have sex with men. In Nippani, Karnataka State, a sex worker collective that received international recognition for its AIDS prevention work, including empowering sex workers to use condoms, and which distributed 350,000 condoms per month, was violently disbanded by local officials and denied the right to file a complaint with the police, who did not consider sex workers “normal citizens.” AIDS educators in Bangalore were severely beaten, falsely accused of drug offenses, and had chili rubbed into their eyes and vaginas by police. HIV/AIDS educators who target men who have sex with men have suffered serious police abuse, and, in one case, detained for 47 days without access to potable water, clean food, or sanitations facilities.4

Another example of abuse is the case of Dr. Wan Yanhai. The Chinese government has spent the better part of the last decade attempting to undermine the work of Dr. Wan Yanhai, an outspoken advocate of the civil and political rights of gays, sex workers, drug users and other marginalized groups who has been an invaluable source of information about HIV/AIDS. In 1993, after he began speaking out on behalf of gays and other marginalized groups, Chinese authorities accused him of promoting homosexuality and supporting prostitution, closed down a health promotion program he had organized for gay men, and cut back an HIV/AIDS prevention hotline he ran. In 1994, he was dismissed from his government health post and forced out of his housing. Since 1994, Dr. Wan Yanhai has coordinated the AIZHI (AIDS) Action Project, which provides information and education about HIV/AIDS. He has also worked to document HIV/AIDS in Henan Province, where thousands of villagers contracted the disease through faulty blood collection practices. Dr. Wan Yanhai has conducted this work in the face of a campaign of harassment and

2 See, for example, S.C. Code Ann. § 59-32-30(A)(5) (barring discussion of “alternate sexual lifestyles from heterosexual relationships including, but not limited to, homosexual relationships except in the context of instruction concerning sexually transmitted disease”); Ariz. Rev. Stat. Ann. § 15-1716 (proscribing schools from including in their course of study about AIDS “instruction which: 1. Promotes a homosexual life-style. 2. Portrays homosexuality as a positive alternative life-style. 3. Suggests that some methods of sex are safe methods of homosexual sex”); Ala. Code § 16-40A-2 (requiring programs on sex education or human reproduction to include, at a minimum, “[a]n emphasis, in a factual manner and from a public health perspective, that homosexuality is not a lifestyle acceptable to the general public and that homosexual conduct is a criminal offense under the laws of the state”); see also Tex. Health & Safety Code § 163.002(8) (recommending that the state’s model public health education curriculum include emphasis, provided in a “factual manner and from a public health perspective, that homosexuality is not a lifestyle acceptable to the general public and that homosexual conduct is a criminal offence”). 3 In New York, for example, possession of any amount of certain drugs or of a hypodermic syringe may be illegal, see N.Y. Penal Code §§ 220.03, 220.45. Human Rights Watch was told that in Karaganda, Kazakhstan, police put all drug users on a “police watch list,” and that first time and occasional users are targeted because they can be manipulated and subjected to trumped up charges. 4 See Human Rights Watch, Epidemic of Abuse: Police Harassment of HIV/AIDS Outreach Workers in India (July 2002).

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threats by the Chinese government, culminating in a 29-day detention this past August by the state security police.

Harassment of peer educators and others who reach out to marginalized groups is a particularly pernicious form of HIV/AIDS-related discrimination. Discriminating against members of marginalized groups at risk of HIV, and criminalizing their behavior, drives them underground and away from HIV/AIDS prevention tools or treatment. Impeding the work of the best front-line fighters against HIV/AIDS only makes this situation worse.

In many parts of the world, the engine of the epidemic is the subordination of women and girls, another form of discrimination with particularly lethal consequences in a world of HIV/AIDS. Women and girls who know about HIV and have access to condoms may be unable to negotiate safer sex, or refuse unwanted sex; and, if they refuse or resist sex, may be physically harmed or shunned from the household, thus risking impoverishment. Property and inheritance laws may block a women’s access from resources needed to support themselves and their children, making women vulnerable to further exploitation. Cultural practices that pair young women with older men or require widows to have sex with another man after her husband’s death increase women’s risk of contracting HIV. In many parts of the world, women and girls need the permission of their spouse or parent to seek reproductive health services. Rape and sexual violence help drive the epidemic in many settings, including being used as weapons in armed conflicts, as Human Rights Watch and others have documented.5

Given such entrenched gender-based discrimination, it comes as no surprise that in many countries of eastern and southern Africa, HIV prevalence among girls under 18 is four to seven times higher than among boys the same age, an unusual disparity that means a lower average age of death from AIDS, as well as more deaths overall, among women than men. Worldwide, an increasing percentage of all HIV positive adults are women; and in the U.S., where blacks and Latinos account for a disproportionate share of HIV cases, HIV diagnoses have increased among black women more quickly than among other groups.

The vulnerability of women and girls to HIV infection is thus integrally linked to their unequal status. As Stephen Lewis, the UN special envoy on HIV/AIDS in Africa has stated, “This pandemic has become a war on women. AIDS has become the ultimate symbol of gender inequality,” the correction of which requires a “massive, international, single-minded” campaign to enshrine gender equality in the family, in the laws, in the institutions and the apparatus of the state.6 UN bodies have recommended that measures that protect the rights of women be incorporated as part of AIDS policy and law.7 The UN Development Fund for Women (UNIFEM) echoes the work of many social scientists in asserting that the epidemic “would not have reached such vast proportions” if women in Africa and around the world were able to refuse unwanted and unprotected sex.8 In March 2001, delegates from 45 countries endorsed a report made to the UN Commission on the Status of Women that concluded, “Women and girls’ lack of relative power over their bodies and their sexual lives, which is supported and reinforced by their social and economic inequality, makes them more vulnerable in contracting and living with HIV/AIDS.”9

AIDS-related discrimination extends not only to people infected or associated with the disease, but also to their children. An estimated 13-15 million children under fifteen have been orphaned by AIDS, the vast majority in sub-saharan Africa.10 And, for every child who has lost a parent to HIV/AIDS in high-prevalence countries, there is likely to be another or several others who, because a parent or caregiver is ill

5 See, e.g., Human Rights Watch, The War Within the War: Sexual Violence Against Women and Girls in Eastern Congo (2001); Human Rights Watch, Kosovo: Rape as a Weapon of “Ethnic Cleansing” (2001).6 David Brown, “AIDS Conference Told of Fall in Life Expectancy in 51 Nations,” International Herald Tribune, July 8, 2002; Speech by Stephen Lewis to Conference on HIV/AIDS and “Next Wave Countries,” October 4, 2002.7 See, e.g., Joint United Nations Programme on HIV/AIDS (UNAIDS), HIV/AIDS and Human Rights: International Guidelines, U.N. Doc. HR/PUB/98/1 (Geneva, 1998), guideline no. 8.8 UNIFEM, “UNAIDS Partners with UNIFEM to Halt Spread of HIV/AIDS among Women and Girls” (press statement), May 24, 2001.9 Economic and Social Council of the United Nations. Commission on Human Rights resolution 2001/33, "Access to medication in the context of pandemics such as HIV/AIDS," U.N. Doc. E/CN.4/RES/2001/33, April 20, 2001. Passed unanimously with the United States abstaining.

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with AIDS, are unable to stay in school or are obliged to become family breadwinners. These children suffer the dual crisis of being without adequate family care and protection and being stigmatized and socially marginalized because of HIV/AIDS. As a result, they are extremely vulnerable to a wide range of human rights abuses. These children are more likely to be unable to realize the right to education; to be subject to police abuse and violence; to be forced to perform hazardous labor; and more likely to be disinherited and face lack of equal protection before the law in making property claims.

An increasing number of countries require non-residents be tested for HIV prior to entry and exclude HIV positive persons from immigrating.11 Laws requiring mandatory testing of immigrants and excluding HIV positive persons from immigrating have no basis in public health practice or economics, as the International Guidelines on HIV/AIDS and Human Rights have noted.12 Worse yet, by creating the false impression that HIV/AIDS is a problem that is imported by immigrants and that can be solved by their exclusion, these laws deepen prejudice against immigrants and perceived outsiders at a time when attacks against noncitizens, as well as racial and ethnic minorities, have intensified dramatically in the United States and internationally.13

We want to make two major recommendations to address the problems outlined above. First, fighting HIV/AIDS-related stigma and discrimination and the broader range of human rights violations that feed the AIDS pandemic must be a central and adequately funded part of national and international HIV/AIDS programs. All donors--the Global Fund, the World Bank, individual governments—and governments themselves must make explicit, concrete commitments to fighting discrimination and addressing human rights issues as part of their respective HIV/AIDS programs and develop strategies to do so. These strategies must be practical and operational in nature, and should include funding to insure proper implementation and evaluation of progress toward achieving human rights goals.

Second, providing effective treatment to people with HIV/AIDS is a central part of fighting HIV/AIDS-related stigma and discrimination and must also be an integral part of national and international HIV/AIDS programs. In countries where antiretroviral drugs and treatment for opportunistic infections of HIV/AIDS are available and the symptoms of the disease have become largely invisible, it is easy to forget that AIDS is a debilitating and horrifically painful condition. Opportunistic infections such as crytptococcal meningitis, pneumonia and tuberculosis are disabling and a variety of skin rashes and other diseases are disfiguring. All of these conditions are highly prevalent among AIDS sufferers, particularly in countries

10 UNAIDS, Children Orphaned by AIDS: Front-line Responses from Eastern and Southern Africa (December 1999). The US Bureau of the Census estimates that without a significant change in the course of the epidemic, there could be 28 million orphans from AIDS under age fifteen in Africa by 2010. Susan Hunter & John Williamson, U.S. Agency for International Development, Children on the Brink: Strategies to Support Children Isolated by HIV/AIDS (2000), p. 12.11 See, e.g., U.S. Department of State, Human Immunodeficiency Virus (HIV) Testing Requirements for Entry Into Foreign Countries (February 2002) (listing 60 countries’ HIV testing requirements). The U.S. bans noncitizens with HIV from entering the country without a special waiver and from immigration altogether. See 8 U.S.C. § 1182. Some states have denounced discrimination against HIV-positive individuals in the immigration context. France and the United Kingdom have admitted noncitizens with HIV as have, for example, Costa Rica, South Africa, and Thailand, all of which lifted HIV exclusion laws and policies. 12 The U.N. Guidelines on HIV/AIDS and Human Rights expressly point out that “[t]here is no public health rationale for restricting liberty of movement or choice of residence on the ground of HIV status,” and advise that “[w]here States prohibit people living with HIV/AIDS from longer-term residency due to concerns about economic cost, States should not single out HIV/AIDS, as opposed to comparable conditions, for such treatment, and should establish that such costs would indeed be incurred in the case of the individual alien seeking residency.” Joint United Nations Programme on HIV/AIDS (UNAIDS), HIV/AIDS and Human Rights: International Guidelines, U.N. Doc. HR/PUB/98/1 (Geneva, 1998), paragraphs 105, 106.13 Mandatory testing gives rise to other humanitarian concerns with respect to prospective immigrants. There is no guarantee that immigrants will be provided with adequate counseling; and prospective immigrants who test positive may suffer stigma, discrimination or more serious harm in countries with coercive laws or practices. Canadian HIV/AIDS Legal Network, Immigrants and HIV Testing, http://www.aidslaw.ca/Maincontent/issues/testing/e-info-ta16.htm (consulted October 18, 2002).

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where underlying health and sanitation services are weak. And, as a recent UN study reported, most of the world's young people have “no idea how HIV/AIDS is transmitted or how to protect themselves from the disease.”14 The mistaken belief that HIV/AIDS is highly contagious contributes to the stigmatization that may AIDS sufferers experience by their neighbors, employers and even fellow worshipers at church. As one young women with AIDS told Human Rights Watch, “I can’t even go to the market with my skin this way.”15

Providing effective treatment to people with HIV/AIDS reduces stigma and discrimination against people with HIV/AIDS. Treatment allows people with HIV/AIDS to manage their illness as a chronic condition and renders the illness largely invisible, thus allowing them to carry on with their work and their lives. Ensuring greater access to the kind of treatment that has so drastically improved the quality and duration of the lives of people with AIDS in wealthy countries since the 1990s is an important step in helping to neutralize some of the discrimination against people with HIV/AIDS.

14 UNICEF, Young People and HIV/AIDS: Opportunity in Crisis (2002).15 Human Rights Watch, In the Shadow of Death: HIV/AIDS and Children’s Rights in Kenya (2001), p. 22.

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International AIDS Trust

MissionThe International AIDS Trust mobilizes the will, funding and action needed to effectively fight AIDS worldwide. IAT

Enlists the commitment of leaders from all sectors of societies in the global battle against AIDS and empowers them to take action;

Creates partnerships and strategic alliances to promote effective programs locally and globally; and,

Galvanizes support, beginning in the United States, for resources of sufficient magnitude and sustainability to win the battle.

BackgroundIAT comes into being as the epidemic has claimed the lives of 25 million people throughout the world. At the end of 2000, 40 million people were living with the disease, and infection rates are still rapidly increasing in many parts of the world.

As serious as the situation may seem, there are opportunities to take action that can achieve real results. This will require a combination of prevention and treatment programs executed on a scale that matches the enormity of the problem. Making this possible will necessitate the development of indigenous capacity and infrastructure.

To help in this effort, we will mobilize funds, facilitate international cooperation among governments (and between governments and citizens) and perhaps most importantly, stimulate leadership in the battle against AIDS at all levels of society.

Who Is IAT?The IAT Advisory Board consists of prominent international figures including Archbishop Tutu, Elie Wiesel, Whoopi Goldberg, Coretta Scott King and President Paul Kagame. Former Presidents Mandela and Clinton co-Chair the Advisory Board. We are actively negotiating with other figures in the NIS and Asia to join us.

The organization’s President is Sandy Thurman, former White House AIDS Director and someone who has been active in HIV/AIDS work for over fifteen years. She is currently building an international team to ensure the IAT’s work is effectively carried out in key regions (see Addendum B).

What is the IAT?We are an independent, non-governmental organization with the standing to play convener, facilitator, or broker, allowing key stakeholders to come together and identify strategic opportunities for progress. IAT is registered in the USA and has been granted 501(c) 3 tax status.

IAT’s ApproachEducation of decision makers and the public particularly within donor countries – and leadership mobilization globally are the heart of IAT’s strategy. IAT actively works with a broad range of strategic partners such as the Nelson Mandela Foundation in South Africa, UNAIDS, Kaiser Family Foundation, International Crisis Group, the National Association of People with AIDS, and others.

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Global Mobilization CampaignIAT is developing a multi-faceted, state-of-the-art campaign, applying lessons learned from political and issue campaigns. The most important objectives of the Global Mobilization Campaign are to:

Inform “western” audiences about the crisis and help them understand the full humanitarian, economic and security implications;

Fight stigma and the belief that AIDS is someone else’s problem among donor nations and those countries with growing infection rates;

Convince policy-makers at all levels throughout the world that AIDS can be defeated and provide them with options and opportunities for success;

Engender a global climate of hope and resolve in which donor nations as well as countries affected by the disease are willing to allocate resources appropriate to the magnitude of the problem.

IAT is beginning its work in the US where there is an urgent need to inform the public on the global AIDS crisis.

Our message and methodology have clear resonance among other donor nations as well as highly impacted countries.

Leadership MobilizationThe most serious obstacle to any successful anti-AIDS campaign is the continued stigma attached to this disease that drives the pandemic underground and makes small-scale interventions far less effective. Success requires targeted and dedicated leadership, where prominent individuals become catalysts in changing attitudes across the spectrum of society in each nation.

Utilizing the standing and prestige of IAT Advisory Board members—such as Nelson Mandela, Bill Clinton and Desmond Tutu—well as other credible personalities from Asia, Africa and Eastern Europe, the IAT intends to

Stimulate leadership at all levels of society through the world; mobilize people with the standing and prestige to galvanize public and political will and influence the allocation of resources locally and internationally;

Facilitate the creation of an international network of spokespersons who are prominent in their own right and who are capable of engaging national governments and international institutions about issues related to HIV/AIDS;

Identify anti-AIDS “champions” to act as catalysts in areas such as faith, sports, entertainment, youth, women, parliamentarians, etc., and develop a framework for supporting their efforts.

Through the African First Ladies’ Alliance against AIDS, IAT is developing a model whereby constituency leaders are mobilized and given the support they need to be successful advocates for – and within – their constituencies (see Addendum C).

CURRENT PROJECTSRepositioning Project: Funded by UNAIDS and the Kaiser Family Foundation, the project used focus-group methodology to measure shifts in us public opinion regarding global AIDS in the aftermath of the September 11th crisis. It was found that people are increasingly anxious about our security at home, but are also compassionate about suffering abroad and its relationship to our own safety. This project created a better understanding of what drives popular perceptions about HIV/AIDS. The project also revealed where and how to enhance openness about the disease and how to stimulate a natural desire to help.

African First Ladies Alliance Against AIDS: Funded by the Gates Foundation, the project is designed to facilitate the creation of an African First Ladies Alliance Against AIDS, and thereafter to provide technical support. The First Ladies, as leaders, and as the most visible mothers of Africa, bring a unique passion, perspective, and position to the fight against AIDS. The Alliance will focus much needed attention on the special challenges facing women, children, and families affected by HV and AIDS. It will create platforms

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for voices that would otherwise not be heard, thus promoting a more concerted response to AIDS. An initial meeting was held in Kigale with a follow-up planned for later in 2002.

Family Survival Project: A pilot project in Rwanda that brings together government, international donors, and non-governmental organizations (NGO’s) has begun to prevent mother-to-child HIV transmission by offering limited access to antiretroviral therapies to pregnant women. Furthermore, this project, which is funded by private individuals, is designed to build the capacity of the extended family to provide health care and support services to their HIV positive parents and siblings. This project is currently being conducted at two health clinics in Kigali, the capitol of Rwanda, and has the potential for rapid expansion across Africa.

Reports designed to mobilize new allies in the fight: The International Crisis Group (ICG) collaborated with the IAT on a report entitled “AIDS as a Security Issue.” The report concludes that AIDS is much more than just a humanitarian crisis, but one that undermines the stability of entire nations. This is particularly important post September 11th. The International AIDS Trust also worked with the Synergy Project on a report on ways for corporations to engage in the battle against AIDS.

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The Henry J. Kaiser Family Foundation is an independent philanthropy focusing on the major health care issues facing the nation. The Foundation is an independent voice and source of facts and analysis for policymakers, the media, the health care community, and the general public.

The Foundation is primarily an operating organization that develops and runs its own research and communications programs, often in partnership with outside organizations. The Foundation contracts with a wide range of outside individuals and organizations through its programs and also continues to make a small number of grants for unsolicited proposals each year. Through our in-house policy research and communications programs, and through contracts and grants, we work to provide reliable information in a health system in which the issues are increasingly complex and debate is often dominated by organized interests.

Our work is focused in three main areas: Health Policy, Media and Public Education, and Health and Development in South Africa. The Foundation's headquarters are based in Menlo Park, California, and we also operate a major office in Washington, D.C.

Through our Health Policy program, we provide facts, analysis, and explanation on health policy issues to policymakers, the media and the public. We try to provide information and analysis on a broad range of policy issues, emphasizing those that most affect low-income and vulnerable populations. Major initiatives and focus areas include the Kaiser Commission on Medicaid and the Uninsured, the Medicare Policy Project, the Changing Health Care Marketplace Project, minority health, HIV, and women's health policy.

Through our Media and Public Education program, we work to broadly communicate information about health care issues to our audiences and to give people information that can help improve their health. As part of this effort, the Foundation operates the country's largest program in public opinion research on health issues and conducts a wide range of research projects on the impact of media in contemporary society. We also operate more than 20 joint ventures with different news and entertainment media organizations to reach key target groups with information on public health issues like reproductive health and HIV. Through our online information program, the Foundation directly provides health policy and public health information to the health care community and the public.

Through our program for Health and Development in South Africa, the Foundation continues its more than decade-long commitment to help South Africa develop a more equitable health system and a successful democracy.

The Foundation's work in HIV/AIDS is focused on informing the national policy discussion about the HIV/AIDS epidemic within the context of a changing treatment environment and health care delivery and financing system. Our work focuses on issues of health care coverage, financing, access to care, and prevention, particularly for those increasingly impacted by the epidemic including women, people of color, and young people. Our work and partnerships address topics such as the implications of changes in Medicaid policy for people with HIV, the impact of managed care on HIV care in the US, the changing role of HIV testing, and the disproportionate impact of HIV in minority communities. By providing new information about the epidemic, we serve as an information resource for policymakers, the media and the HIV community on key issues being debated in Congress and the states. We also work to provide information to the public about HIV prevention and treatment.

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NASTADNATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

U.S. State AIDS Directors’ Commitment to Fight Stigma, Denial and Discrimination

The National Alliance of State and Territorial AIDS Directors (NASTAD) represents America’s chief HIV/AIDS program directors from the fifty U.S. states and ten U.S. territories. State AIDS directors have programmatic responsibility for planning, administering, monitoring, and evaluating HIV/AIDS health care, prevention, and supportive service programs funded by state and federal governments. Programs administered by state AIDS directors serve every population infected with and affected by HIV/AIDS.

As part of the renewed and unified U.S. response to the global HIV/AIDS pandemic, NASTAD founded its Global AIDS Technical Assistance Program in October 2000. Funded by the Centers for Disease Control and Prevention Global AIDS Program (CDC-GAP), the NASTAD Global AIDS TA Program connects American state AIDS directors and their program staff to HIV/AIDS program managers in Africa, Asia, Latin America and the Caribbean to provide support in all areas of HIV/AIDS program planning and program administration.

In many instances, the roles and responsibilities of state AIDS directors mirror those of HIV/AIDS program managers in Ministries of Health and/or the National AIDS Control Programs. Both are responsible for the coordination and provision of comprehensive prevention, care and support services. Both oversee the coordination of these services internally, within the ministry/department, and externally, with other federal, state, local and community-based organizations and service providers. This is particularly true in light of recent efforts to decentralize AIDS programs in Africa and Asia. In addition, both individuals play a critical role in juggling multiple funding streams, whether they are federal monies in the U.S. or funding from bilateral and multilateral donor agencies in Africa and Asia. Although HIV infection rates and available HIV/AIDS resources differ, there is a structural parallel relationship between U.S. state AIDS directors and MOH and/or NACP program managers.

State AIDS directors have a rich history of administering various programs targeting youth, rural, at-risk, infected and affected populations. They have considerable experience in identifying community needs, facilitating strategic planning for local and statewide coalitions, collaborating with People Living with HIV/AIDS(PLWHA) coalitions, integrating related programs and services, working against stigma, denial, discrimination and apathy in the United States, and in responding to other challenges of the HIV/AIDS epidemic nationwide. The NASTAD office, based in Washington, DC, supports a domestic network for peer to peer technical assistance, connecting state AIDS directors to one another as they move forward in areas such as community planning, implementation of strategic plans, supporting and coordinating decentralization, and the “scaling up” of proven HIV/AIDS research and activities.

U.S. Experience of Stigma, Denial and Discrimination

For the purposes of this paper, stigma will be defined as “to brand as disgraceful or [dishonorable]” (Webster’s II New Collegiate Dictionary, 1995). Denial will be defined as “the act of disowning or disavowing” (Webster’s II New Collegiate Dictionary, 1995) someone or some groups based on their affiliation with or membership with a group that is characterized by a trait, habit, or condition deemed socially and culturally unacceptable. Discrimination will refer to the unfair cultural, social, and legal treatment of individuals or groups based on the belief or fact that they are or have a condition deemed to be culturally, socially, legally unacceptable.

Since the beginning of the HIV/AIDS epidemic in the early 1970’s in the United States, HIV/AIDS activists and advocates, state AIDS directors, HIV/AIDS program managers, health care and social service professionals and others have relentlessly fought against the individual, community-level, and socio-political effects of stigma, denial, and discrimination (SDD) around HIV/AIDS in the US. State AIDS directors, in particular, find that the need to combat the SDD related to HIV/AIDS is urgent and essential in developing broad based support for public health interventions, to alleviate fear, to ensure appropriate and targeted planning, and to ensure appropriate allocation of limited resources for prevention and care. State

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AIDS directors, and NASTAD, realize that broad-based community mobilization and support for state and national level programming cannot occur while SDD dominate.

Public discussions over discrimination and legal protection of PLWHA emerged in response to the deleterious effects of SDD. In the last twenty years, HIV/AIDS SDD have plagued American schools, businesses, health care systems and the pharmaceutical industry, military institutions, and immigration and refugee support systems, as well as public health program design and implementation. Discrimination against those infected with and affected by HIV is often entangled in a larger web of discrimination, namely against women, the poor, U.S. ethnic minorities, gay men and lesbian women. The interrelatedness of race, class, gender, sexual orientation, and their impact on and relationship to HIV positive individuals cannot be understated. Even today, trying to test high-risk populations or encouraging those already positively diagnosed to access care is highly influenced by the cultural competency of local service providers who, in many cases, perpetuate the SDD, rather than fight it. In addition, a general mistrust of the U.S. medical system, grounded in a history of abuse and neglect of the most disenfranchised members of American society often inhibits those not in need of care or public services from seeking them.

State AIDS directors have been leaders in communicating not only that discrimination leads to negative public health outcomes, but also that the SDD attached to HIV/AIDS, compounded by these other factors, leads to barriers in strategic planning, community mobilization and planning, needs assessment, and allocation of resources. In many instances, state AIDS directors and their program staff have been successful in mitigating some forms of discrimination and their related negative impact on public health interventions. For example, many states have been able to articulate how discrimination against the gay community leads to youth suicide or high-risk behavior by using media and/or other communication tools to raise public awareness of the discrimination. In doing so, they have enhanced the trust of the stigmatized communities towards public health interventions, and have increased the likelihood of their accepting and accessing prevention and care services.

One component of comprehensive HIV/AIDS program planning, voluntary counseling and testing, provides another clear example of how issues of stigma and discrimination can influence both public health policy and program design. Escalating traditional public health concepts and ideology, socio-political, legal, and human rights issues have shaped the design of voluntary counseling and testing systems in the U.S. This has included anonymous vs. confidential HIV/AIDS testing, partner notification laws, mandatory testing laws, and HIV/AIDS testing of newborn infants -- issues that continue to be impacted by SDD. Although the passage of non-discrimination legislation (to protect the rights of HIV+ persons to education, employment, marriage, privacy and confidentiality) and legislation to support access to HIV/AIDS treatment (including psycho-social support to those infected with or affected by HIV/AIDS) have been achieved in the United States, the underlying forces of SDD pervade the shape, the form and the interpretation of that legislation.

The importance of legislation in combating stigma and denial in the U.S. cannot be underestimated. The perceived and uncontested “innocence” of Ryan White, a young boy with hemophilia who acquired HIV/AIDS disease through a blood transfusion, led to heightened public awareness of HIV/AIDS and compassion for those living with the virus in the United States. The U.S. Congress then showed broad bipartisan support in providing resources to care for those living with HIV/AIDS, not only transcending political and ideological differences, but bringing the issues of HIV/AIDS care and support to the forefront of our national agenda. The Ryan White CARE (Comprehensive AIDS Resources Emergency) Act, passed in 1990, continues to serve not only as a vehicle for much needed resource allocation, but also as a tool for both public education and sustained political will.

Though the passage of the Ryan White Care Act has been an extraordinary accomplishment, one that has allowed states (led by the state AIDS directors) to address issues of SDD, and how they play out in program design and implementation, it is a living example of the pervasive underlying concept of stigma. It was not until an “innocent AIDS victim” was viewed as a symbol for HIV/AIDS that the federal government was capable of affirming its role in the provision and assurance of HIV/AIDS prevention and care.

NASTAD International Technical Assistance in Stigma, Denial & Discrimination

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State AIDS directors have been pivotal in developing participatory processes that involve key stakeholders including PLWHA, youth, racial and ethnic minorities, private and public sector service providers, clinicians, community based organizations, and faith communities to identify and deal with the many issues around SDD. State AIDS directors have asserted the importance of using epidemiological data to determine who is infected and how, and to develop appropriate interventions to minimize the impact of SDD in access to and provision of services. State AIDS directors are charged with implementing enacted legislation meant specifically to mitigate the effects of stigma. AIDS directors are responsible for the coordination of statewide HIV/AIDS planning groups that include representation by PLWHA, youth, racial and ethnic minorities, private and public sectors, health and social service organizations, clinicians and others.

Members of the NASTAD Global AIDS TA Program steering committee have identified areas of possible technical assistance to countries interested in receiving peer TA in the areas of stigma, denial and discrimination. Topics for international peer TA to countries combating stigma may include:

Exchanging lessons learned in fighting stigma, denial, and discrimination in the U.S. (general); Exchanging community level, multi state, and multi national initiatives and success stories in

overcoming stigma and denial; Developing supra ministry level councils/ committees to produce national policy Providing theoretical frameworks and the resulting practical approaches to community

mobilization for mitigating the effects of stigma and denial; Discussing the impact of stigma, denial and discrimination in HIV/AIDS planning and program

management; Facilitating processes for MOH or other government officials to envision HIV/AIDS care and

prevention without the barriers of stigma, denial and discrimination; Sharing success stories around the Ryan White CARE Act; Facilitating community and statewide strategic planning for HIV/AIDS care and prevention,

including people living with HIV/AIDS in planning and funding allocation processes; Providing systematic approaches to cultivating and sustaining political will, leadership and

commitment at the national, state, and community levels; Identifying opportunities for collaboration with PLWHA associations and coalitions; Researching, designing and developing indicators and measures of stigma, denial and

discrimination; Designing appropriate and accessible voluntary counseling and testing systems; Working with faith-based organizations and faith leaders to strengthen resolve and to diminish

stigma due to religious views that HIV/AIDS is a manifestation of moral/spiritual failings; Providing examples of approaches to working with and reaching out to special groups (i.e. youth,

intravenous drug users, the poor, ethnic minorities, refugees, and others); Reviewing anti-discrimination laws and other legislation protecting the rights of PLWHA and

persons in high-risk groups in the United States; Establishing a peer state-to-state, nation-to-nation TA network.

These topics for international peer technical assistance in the area of stigma, denial and discrimination can be combined together or with additional topic areas. For example, a State AIDS Control Society in India may want to discuss issues of stigma and denial directly as they relate to national surveillance systems or a Regional AIDS Council in Ethiopia may want to address stigma as a barrier to recruitment of PLWHAs in their prevention program planning efforts.

Research in Stigma, Denial and Discrimination

In addition to work against stigma, denial and discrimination, some state AIDS directors have begun to research the causes and consequences of stigma in our society, as well as the development of indices to measure the prevalence, degree, and effects of stigma. Connecting such research with similar research endeavors of UNAIDS, USAID (including HORIZONS), African or Asian governments, and other partners is another manner in which NASTAD and state AIDS directors can support efforts in stigma and denial.

For more information, contact Natasha Sakolsky, NASTAD Global AIDS TA Program Director, 444 N. Capitol St., NW, Suite 339, Washington, DC 20001; 202-434-8090; nsakolsky@nastad.org .

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National Minority AIDS Council

HIV/AIDS stigma has played a significant role in fueling the epidemic both globally and domestically. HIV/AIDS related stigma has a negative impact both on individuals and society as a whole in terms of economic, psychological, physical, spiritual, familial, and community well being.

In the United States, HIV/AIDS stigma has been superimposed on individuals and groups that have already been marginalized and relegated to the fringes of society. These groups which include gay, bisexual, men who have sex with men, substance abusers and particularly injection drug users, immigrants, commercial sex workers, formerly incarcerated individuals and women of color and ethnic and racial minorities are forced to deal with discrimination related to homophobia, addictophobia, xenophobia, sexism, classicism and racism. Already socially disadvantaged to varying degrees, they must face the stigma of being associated with marginalized groups, and the stigma related HIV and AIDS.

These multiple layers of stigma force many individuals who are living with HIV/AIDS or at risk of becoming infected with HIV to live in secrecy and subject them to being ostracized and discriminated against in a society that often times heralds itself as a leader in ensuring human rights to all. The behavioral effect of this secrecy could be a major contributor into the continual rise in the incidence of HIV infection among homosexuals, injecting drug abusers, women, incarcerated and formerly incarcerated, and other stigmatized groups that have been judged as morally inept.

Ethnic and racial minorities, of the aforementioned stigmatized groups are faced with a higher degree or level of HIV/AIDS stigma and discrimination. Gay men of color, women of color, incarcerated people of color and other groups of color already contend with racism and discrimination as a result of their race and ethnicity. The coupling effect of race related and HIV/AIDS related stigma and discrimination is so pronounced that there must be interventions on a macro level to lessen and ultimately eliminate the associated stigma and allow behavioral scientists who design and develop interventions to address factors that increase the participation of these groups in behaviors that put them at risk of HIV infection.

Gay men of color, particularly African-Americans and Latinos, face enormous pressure from within their ethnic/racial communities to conform to heterosexual norms. These two groups come from cultures that are highly motivated by their religious beliefs. The influence of the Catholic Church and the fundamentalist Protestant doctrines on Latino and African-American gay men, respectively, create an immense level of cognitive dissonance for those men who are actively engaged in homosexual relationships or activities. For these men, living with church doctrines that consider homosexuality a sin that is punishable by God, while engaging in same gender loving relationships creates tremendous spiritual and emotional conflicts for them. African-Americans and Latinos are subjected to racial discrimination within the gay community and from society on the whole which exacerbate the level of alienation that they feel as individuals.

Alcoholics and drug addicts, particularly injecting drug users (IDUs), experience similar levels of moral condemnation as do homosexuals. Most injecting drug users are viewed as the lowest forms of humanity and like homosexuals are viewed as responsible for their own fate if they become infected with HIV due to their involvement in activities associated with their respective groups. The activities associated with their drug use that put them at risk of HIV infection are often performed in an atmosphere of secrecy that leads to heightened levels of risk-taking. Racism and discrimination becomes important in light of the fact that the perception, whether real or imagined, is that most IDU’s are people of color. This form of drug use is viewed more negatively than drug use where there is a higher propensity for the abusers to be from the white majority population or from a more economically advantaged group, i.e. powder cocaine users. The criminal justice system has contributed to the level of stigma associated with IDU’s by criminalizing the drug use rather than looking at the behaviors as a form or pattern of addiction requiring medical intervention and treatment as opposed to incarceration.

There have been many efforts to decrease the activities that individuals engage in that put them at risk of HIV infection, but very little has been done to combat the degree or level of HIV related stigma that

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individuals and groups have to contend with in a supposedly enlightened society. There have been few attempts to understand the correlation between HIV related stigma and the participation in HIV related risk behaviors by members of socially marginalized groups who have experienced racism and/or discrimination due to their membership in these groups.

RecommendationsStrategies to address HIV/AIDS related stigma must be developed at various levels.

The National Institutes of Health, Centers for Disease Control and Prevention and institutions of higher learning must commit more research resources to understanding how HIV/AIDS stigma contributes to HIV risk for individuals who are already members of other stigmatized groups.

The rights of individuals living with HIV/AIDS must be protected by law in every aspect of their lives i.e. housing, employment, medical care, etc. While we have come a long way in terms of the enactment of laws to protect the rights of people affected by HIV/AIDS, enforcement of these legal protections is paramount.

Religious institutions must examine the role that theological doctrines play in intensifying stigma associated with homosexuality, drug addiction and commercial sex work if they are to be truly committed to combating the spread of HIV.

Although we have made significant progress in combating racism and discrimination in this country, we must work hard to eradicate the vestiges of social inequality.

On a program level, service providers must gain greater understanding of the impact of HIV/AIDS related stigma on the individuals they serve and integrate strategies to combat it. This includes components that increase individual self-esteem and self-efficacy in practicing behaviors that minimize their risk of HIVinfection and maximize their well being.

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Physicians for Human Rights (PHR) promotes health by protecting human rights. We believe that human rights are essential preconditions for the health and well-being of all people. Using medical and scientific methods, we investigate and expose violations of human rights worldwide and we work to stop them. We support institutions that hold perpetrators of human rights abuses, including health professionals, accountable for their actions. We educate health professionals and medical, public health and nursing students and organize them to become active in supporting a movement for human rights and creating a culture of human rights in the medical and scientific professions.

Since 1986, PHR members have worked to stop torture, disappearances, and political killings by governments and opposition groups; to improve health and sanitary conditions in prisons and detention centers; to investigate the physical and psychological consequences of violations of humanitarian law in internal and international conflicts; to defend medical neutrality and the right of civilians and combatants to receive medical care during times of war; to protect health professionals who are victims of violations of human rights; and to prevent medical complicity in torture and other abuses.

As one of the original steering committee members of the International Campaign to Ban Landmines, PHR shared the 1997 Nobel Peace Prize. PHR currently serves as coordinator of the US Campaign to Ban Landmines.

HIV/AIDS, Discrimination and Human Rights

The AIDS pandemic represents more than a health catastrophe that will be solved only by an infusion of funds. It is both a product of, and exacerbated by, pervasive violations of human rights.

Discrimination and social and political inequality prevent women from protecting themselves from sexual assault or unprotected sex, stigmatize women who are HIV-positive, discourage them from being tested for the HIV virus, and deny women treatment that is available for the disease or infections associated with it.

Economic deprivation, chronic denial of health care to the poor, and failure to assure the right to privacy also contribute to the pandemic.

Children, men who have sex with men, sex workers and their clients, injecting drug users, persons confined in institutions and prison populations, refugees and internally displaced persons are particularly vulnerable to the discrimination that fuels the disease.

Stigma, discrimination and social exclusion leave vulnerable groups such as women and girls, drug users and homosexuals without access to treatment and social services. Denial of information further hampers efforts to prevent or address HIV/AIDS, and without the expectation of health care, at-risk individuals are discouraged from testing. Human rights violations occur even in the health sector itself, as individuals seeking information and treatment are discouraged or turned away. Frequently, the confidentiality of HIV/AIDS patients is breached.

In its Declaration of Commitment on HIV/AIDS adopted in June 2001, the UN General Assembly acknowledged this important connection between HIV/AIDS and human rights:

"The full realization of human rights and fundamental freedoms for all is an essential element in a global response to the HIV/AIDS pandemic, including in the areas of

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prevention, care, support and treatment, and that it reduces vulnerability to HIV/AIDS and prevents stigma and related discrimination against people living with or at risk of HIV/AIDS."

The Assembly warned that "the global HIV/AIDS epidemic, through its devastating scale and impact, constitutes a global emergency and one of the most formidable challenges to human life and dignity, as well as to the effective enjoyment of human rights."

HIV/AIDS is a preventable and manageable disease that has been turned into a pandemic through ignorance, lack of political will, neglect, and discrimination. The disease most deeply affects those least able to enjoy their rights: the poorest, the weakest, the least educated, the most stigmatized. More than 35 million people are living with HIV. Twenty-two million men women and children have died, and 15,000 people are infected every day. The pandemic represents more than a health catastrophe. It is both a product of, and is exacerbated by pervasive violations of human rights.

Physicians for Human Rights Statement on HIV/AIDS and Human Rights

The AIDS epidemic is the most devastating crisis in the history of human health. More than 35 million people are living with HIV. Twenty-two million men, women and children have died, and 15,000 people are infected every day. If current trends do not change, there will be more than 40 million AIDS orphans in Africa alone by 2010. At current infection rates, a fifteen-year-old boy in Botswana now has an 85 percent chance of dying of AIDS.

But the pandemic represents more than a health catastrophe. It is both a product of, and exacerbated by, pervasive violations of human rights. HIV/AIDS is a preventable and manageable disease that has been turned into a pandemic by ignorance, neglect and violations of human rights. The disease most deeply affects those least able to enjoy their rights: the poorest, the weakest, the least educated, the most stigmatized.

Discrimination

Pervasive discrimination prevents women from protecting themselves from sexual assault or unprotected sex, stigmatizes women who are HIV-positive, thus discouraging them from being tested for the HIV virus, and denies women treatment that is available for the disease or infections associated with it. The second-class status of women in economic, social and civic life has fueled the pandemic in much of the world. Fundamental inequalities between men and women must be addressed as part of the response to the AIDS pandemic. Discrimination also extends to men who are infected so that they, too, are discouraged from testing and seeking treatment. Discrimination against people living with HIV/AIDS not only discourages them from seeking testing and treatment, but affects all areas of their lives.

Inadequate Prevention and Treatment Efforts

All governments, including those in the developed world, have an obligation to fulfill the right to health to the maximum of their available resources. Governments have been far too slow in fulfilling their obligations to protect the human right to health by planning, funding, and implementing programs to provide comprehensive prevention, treatment and care. Without these programs, millions of people will die. Highly effective treatment and prevention regimes exist to contain HIV/AIDS, but while most people living in rich countries have access to these treatments, the vast majority of those living in poor countries do not.

Donor nations have not fulfilled their obligations to protect the right to health through cooperative, supportive activities, including providing the funds needed for prevention and treatment to save millions of lives. Making prevention and treatment regimes available to all human beings is not a matter of charity. International assistance and cooperation are imperatives of human rights as set out in international human rights law.

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Failure to Fulfill the Right to Information

Many governments in countries where the population is most at risk have not provided enough appropriate information about HIV/AIDS, nor provided the necessary educational programs to prevent its spread. Violations of the human right to receive information needed to protect one's health, as set forth in international human rights covenants, are pervasive. Consistent and accurate information about reproductive health and prevention of HIV is crucial to stem the spread of the pandemic.

Enforcement of International Agreements in Violation of the Rights to Health

Governments and international institutions have failed to interpret and enforce international trade agreements regarding pharmaceutical patents in a manner that recognizes their provisions for addressing health emergencies, and is in harmony with and reinforces the right to health as guaranteed in international human rights law. It is clear that this health emergency is sufficient in many countries to permit compulsory licensing and allow parallel imports.

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U.S. Agency for International Development

Stigma, Discrimination, and the Future of HIV/AIDS Law, Policy and Advocacy

The United States Agency for International Development’s Office of HIV/AIDS is the steward of approximately $510 million in U.S. taxpayer dollars this year, and is charged with supporting programs in HIV prevention and care in over 50 countries around the world.

In carrying out this work since 1986, USAID has learned that key among the contextual factors that impact effective HIV prevention and care efforts are the legal and human rights environment in a given country, and the degree of stigma at the community level.

Laws and regulations that protect individuals from HIV-related discrimination (in housing, in work, in health care, etc.), and that are enforced, allow for the full participation of those individuals in the life of the community, and therefore strengthen their ability to not engage in risky behavior that may put themselves and others at risk for HIV. The absence of such legal protections leads to marginalization of HIV positive individuals, and those perceived to be most at risk for HIV transmission; and marginalization is often a key element in the transmission of HIV.

So, when a government, from the national level to the local level, recognizes and respects the rights of those who are often marginalized, including people living with HIV/AIDS (PLWHA), programs for HIV prevention and care can be delivered more efficiently by service providers, and will be received more readily by otherwise vulnerable groups. That is, respect for rights translates into more effective prevention and care.

At the same time, at the community level, stigma (de-valuing another individual or group because of a characteristic that they possess and which makes them different from the majority) forces those most vulnerable to HIV infection underground and, therefore, strengthens the chain of transmission among those individuals and groups, and through them to the rest of the community.

When a local community works to lessen stigma directed at those individuals and groups that are usually most vulnerable to HIV transmission (sex workers, men-who-have-sex-with-men, injecting drug users, others perceived by the community to be at risk for HIV), those individuals will be less afraid to access services, and so will more likely receive and internalize prevention information and messages. In the same way, when a local community works to eliminate stigma directed at PLWHA, such individuals will not only be more likely to access appropriate care services, but will more likely be empowered to participate in the community’s HIV prevention response.

The above elements of an effective legal/policy/advocacy strategy: raising awareness of human rights, promoting legal rights, and lessening stigma, underscore the need for a multi-sectoral HIV/AIDS response. The government, community and individual attitudinal change, as well as the requisite policy change to promote it, require both health and non-health sector collaboration.

Involvement of PLWHA: Advocacy and Beyond

USAID’s experience is that the involvement of PLWHA in designing and implementing prevention and care activities is essential to these activities’ sustained success. Therefore, USAID programs are working to create an environment in which people living with and affected by HIV/AIDS are empowered to become involved as educators, community mobilizers, and active participants in the HIV/AIDS efforts in their communities. The involvement of PLWHA makes programs more effective, appropriate, and meaningful:

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Prevention messages delivered by people living with the infection are a powerful voice on behalf of behavior change and help reduce fear and stigma;

Involvement in HIV/AIDS programs benefits PLWHA by reducing their isolation and empowering them to make a difference;

Organizations that involve PLWHA in prevention and care programs reap many benefits, including better information about the needs of affected communities and increased credibility with the community.

As a result of the above “lessons learned”, USAID played a major role in supporting the Greater Involvement of People Living with HIV/AIDS Principle, in 1994, as part of the Paris Declaration, and this principle remains a critical element in all of the agency’s HIV efforts.

Multi-Sectoral Approach

USAID is committed to developing and evaluating effective, replicable stigma and discrimination approaches. This work is being carried out by a number of USAID-funded partners, most notably the POLICY Project. (The POLICY Project’s HIV/AIDS efforts centers on working with civil society and government partners in developing countries to facilitate the development of high quality, sustainable HIV/AIDS policies and programs.)

Among the strategic activities necessary for achieving an environment in which people can live free from stigma and discrimination are: policy development and reform, advocacy and awareness raising, resource allocation, and capacity development. These stigma and discrimination approaches are integrated into work with a variety of key strategic partners:

1) PLWHA; 2) community based groups; 3) government departments and agencies;4) health services and providers, both government and private; 5) businesses and the world of work; and,6) NGOs operating in the broader development sector.

The following examples illustrate some of the ways in which USAID and its partners are working to address stigma and discrimination around the world.

South Africa. Several important HIV/AIDS activities – with PLWHA, in the world of work, with government entities, and with civil society and faith-based groups – are being carried out in South Africa. In particular, new USAID-funded activities have been initiated to measure stigma and discrimination and to evaluate replicable interventions that address those issues. Working in a country with a well-established, generalized epidemic, the program uses a holistic approach that involves sharing experiences, causes, and implications of stigma for PLWHA; building capacity of the National Association of People Living with HIV/AIDS and its members; assessing the extent to which national departments and ministries have institutionalized human rights principles in their own workplace programs; and working with faith-based groups and leaders to enhance access to services and to understand how stigma affects access and use of services. The POLICY Project is the USAID partner leading this initiative.

Mexico. The epidemic is in its nascent stages in Mexico, still confined primarily to groups that practice high-risk behaviors, particularly men who have sex with men. Similar to our work in South Africa, USAID has partnered with POLICY to develop indicators, measure stigma and discrimination, and measure program impacts. This program highlights the experiences of vulnerable groups. In particular, activities will focus on how stigma affects the way PLWHA lead their lives. The project seeks to develop a survey and indicators to document instances of stigma and discrimination; support advocacy efforts of PLWHA groups; research barriers to services; review laws and policies, with a focus on workplace issues; and develop training programs for health care personnel, other service providers, and the media aimed at encouraging compassionate responses to PLWHA.

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Cambodia. USAID partnered with the POLICY Project and the International HIV/AIDS Alliance through the Khmer HIV/AIDS NGO Alliance to support the establishment of the Cambodian Positive Network, the country’s first national network of PLWHA organizations. The Network’s mission is to empower PLWHA to participate in the broader policy dialogue and advocacy process. The Alliance and POLICY provides the Network with an intensive mentoring and technical assistance program focused on capacity development and institutional strengthening of network members. The project also works with Wat Naria, a Buddhist Monk non-governmental organization. Building on USAID-provided training and technical assistance, Wat Naria recently facilitated a workshop that led to the development of a community HIV/AIDS strategic plan and helped confront the silence and stigma surrounding HIV/AIDS. It has also conducted sensitization and advocacy training workshops in monk teaching institutions.

Ukraine. Further highlighting the need for a holistic approach to the epidemic, USAID/Ukraine’s activities illustrate the importance of integrating family planning/reproductive health, safe motherhood, and HIV/AIDS programs. USAID partners with the POLICY Project, which has recently begun working with non-governmental organizations to document the barriers PLWHA face when trying to access reproductive health services and recommend needed reforms in laws, policies, and regulations. The activity has a particular focus on upholding human rights, improving access to services for HIV-positive pregnant women, and reducing mother-to-child transmission.

Ecuador. USAID support to the International HIV/AIDS Alliance allowed them, along with their Ecuadorian partner NGO, Kimirina, to carry out a knowledge and aptitude survey of journalists and editors, and a review of AIDS related copy and broadcasts, to identify positive and negative images and stereotypes related to HIV. This was followed by training workshops for journalists in 5 cities, which in turn generated a series of very positive de-stigmatizing articles and broadcasts reaching millions.

Zambia. Human rights and workplace issues are an important element of USAID/Zambia’s activities. Working with the POLICY project, USAID supported the Women and Law in Southern Africa in developing “Guidelines on HIV/AIDS and Employment” that were later officially adopted by Zambia’s National HIV/AIDS Secretariat. Additionally, in collaboration with the WLSA Research and Education Trust, the Network for Zambian People Living with HIV/AIDS, the Zambia Institute of Mass Communication Education Trust, and the Zambia Integrated Health Project, the Human Rights Initiative on HIV/AIDS was launched. The initiative supports the “Know Your Rights” media campaign, the human rights referral center of the Network for Zambian People Living with HIV/AIDS, and networking efforts between the partners and workplace programs.

Tanzania. Assessing the legal environment is an important strategy for addressing stigma and discrimination, for laws and policies articulate a country’s values and priorities and provide for mechanisms to redress abuses. The POLICY Project is the key USAID partner for this work, and recently technical assistance was provided to the Tanzania Women’s Lawyers Association, who, at the request of Tanzania’s Ministry of Justice and Constitutional Affairs, conducted an extensive analysis of national laws and policies concerning HIV/AIDS. The association’s recommendations for addressing policy gaps and incorporating human rights principles are scheduled for review by the Tanzania Parliamentary AIDS Committee.

CORE Initiative – Communities Responding to the HIV/AIDS Epidemic. CORE Initiative, a pilot program sponsored by USAID provides technical and financial assistance to faith and community groups that are seeking to increase advocacy, reduce stigma and discrimination, and improve care and support in developing countries. The initiative’s empowerment grants have helped grassroots organizations address stigma and discrimination within communities. For example, a grant to the Guyana Responsible Parenthood Organization is enabling PLWHA to participate in workshops to build their self-esteem and life skills. The Jitegemee Youth Group of Kenya is using its empowerment grant to support community training, youth rallies, and care and other services for PLWHA.

The flagship of the CORE Initiative is its demonstration project with the Anglican Church of the Province of Southern Africa, which is guided by the charismatic leadership of the Most Reverend Njongokulu W.H. Ndungane, Archbishop of Cape Town, Metropolitan of Southern Africa. With USAID and POLICY support, Archbishop Ndungane convened the first-ever All Africa Anglican Conference on HIV/AIDS in

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August 2001, which firmly entrenched faith-based leaders’ commitment to addressing HIV/AIDS in a compassionate manner that upholds the dignity of PLWHA. The Church of the Province of Southern Africa has since developed strategic plans – for the Anglican Communion and each parish and diocese – to guide comprehensive HIV/AIDS programs at all levels.

Conclusions

Stigma and discrimination confounds efforts to prevent HIV transmission, improve care for PLWHA, and mitigate impacts of the pandemic.

Therefore, there is a fundamental need to address HIV/AIDS stigma and discrimination, which must include the empowerment of PLWHA and protection of human rights.

PLWHA must be involved in a meaningful, active way in all phases and stages of policy and program development.

Three practical approaches for addressing stigma and discrimination are: 1) operationalizing the Greater Involvement of People Living with HIV/AIDS principle; 2) Legal, regulatory, and policy reform; and 3) community mobilization and advocacy. Other necessary aspects include multisectoral engagement and capacity development.

For more information on USAID’s approach and programming regardingHIV stigma and discrimination, contact:

Clifton J. Cortez, Jr., JDSenior Policy and Technical Advisor

Office of HIV/AIDSTel: (202) 712-0676ccortez@usaid.gov

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Measuring HIV/AIDS Stigma and DiscriminationProject Update: Project Update: MMEXICOEXICO

The Need for a Framework

One of the barriers to the development of effective strategies to address HIV/AIDS stigma and discrimination is the current lack of theoretical concepts and measurement tools. Efforts to incorporate stigma mitigation processes into HIV/AIDS programs have had to rely on anecdotal evidence and comparative evidence from other areas in the health field. To facilitate sound decision making, policy development, and strategic design of interventions, there is an urgent need for a clear understanding of, and specific data regarding, HIV/AIDS-related stigma and discrimination.

Objective

The objective of the POLICY Project’s “Stigma and Discrimination Initiatives” is to demonstrate how HIV/AIDS-related stigma and discrimination can be reduced using careful analysis and replicable interventions. The initiatives, based in Mexico and South Africa, are funded by the U.S. Agency for International Development (USAID). The aim of the projects is to develop indicators to measure internal and external stigma and discrimination as well as the impacts of interventions to address these issues. The identification and sharing of lessons learned will be an important result of the initiatives.

Project Focus

The focus of the Mexico stigma and discrimination initiative is on a concentrated epidemic, more specifically men who have sex with men (MSM). The initiative emphasizes the need to empower people living with HIV/AIDS (PLWHA) so that they can be more active in tackling both the internal and external manifestations of stigma and discrimination.

It also seeks to help health care providers and PLWHA to better understand how stigma adversely affects the delivery of services as well as identify the types of national and operational policies that can be adopted to reduce stigma and discrimination.

Finally, the initiative intends to explore how public perception of PLWHA, as influenced by media images, can be improved and, thus, contribute to a more enabling, supportive environment.

Approaches

Design of a survey and indicators on stigma and discrimination and capacity building activities with PLWHA organizations.

Research by PLWHA to identify barriers to access to and use of health care, welfare, legal support, and employment services; development of policy dialogue materials in these areas; and development and testing of training programs for health care providers.

Review of legislation, policies, and norms related to stigma and discrimination, particularly in the workplace, combined with advocacy and policy dialogue to decrease discrimination in the workplace.

Development and testing of a media training and sensitization program, including involvement of PLWHA and creation of a photojournal on PLWHA.

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Implementation

POLICY collaborates with public and NGO partners, including two PLWHA networks. Partners include the National AIDS Center (CENSIDA), National Institute for Public Health (INSP), Colectivo Sol, Red Mexicana de Personas Viviendo con VIH/SIDA, Letra S, and the Frente Nacional de Personas Afectadas por VIH (FRENPAVIH). Additionally, the project draws on local experts to assist in implementation.

Through separate funding from USAID/Mexico, Macro International’s MEASURE Project is conducting a survey of health service providers in three states to get a baseline measurement of stigma among that target group. The MEASURE activities complement POLICY’s activities and are being implemented in collaboration with the same set of partners.

Accomplishments to Date

Development of indicators to measure HIV/AIDS-related stigma and discrimination in Mexico . INSP convened a three-day meeting of international and Mexican experts on HIV/AIDS in August 2002. The meeting was co-funded by the InterAmerican Development Bank, INSP, and POLICY, and was attended by all implementing partners.

The meeting resulted in a draft set of indicators for measuring internal and external stigma; stigma among health care providers; legal and normative protections against stigma and discrimination; and the way that HIV/AIDS and PLWHA are portrayed in the media.

Identifying and addressing internal and external stigma among PLWHA. INSP is collaborating with Colectivo Sol and the Red Mexicana de Personas Viviendo con VIH/SIDA to implement a research study designed to improve our understanding of internal and external stigma around HIV/AIDS and how it affects access to and utilization of essential services. Red Mexicana has the primary role in this component and INSP is providing technical assistance in project design, methodological issues, quality assurance, data collection, and analysis, as deemed necessary.

Identifying legal and normative interventions to reduce stigma and discrimination, with special focus on the workplace. INSP is working with a leading Mexican attorney and the PLWHA network, FRENPAVIH, to:

Assess the legal and normative environment related to stigma and discrimination against PLWHA and the implementation of laws and norms in practice;

Identify policy or operational barriers to implementation of existing laws and norms; and

Suggest policy changes that will help reduce stigma and discrimination, particularly in the workplace.

Changing the way HIV/AIDS and PLWHA are represented in the media. Letra S, a local media NGO, has been subcontracted by POLICY to assess the current situation using media scans, design and pilot test a sensitization training curriculum for journalists, and develop materials that provide an alternative view of PLWHA, including developing the photojournal.

Stigma: A powerful and discrediting social label that radically changes the way individuals view themselves and are viewed as persons (Canadian HIV/AIDS Legal Network).

Discrimination: Any measure entailing any arbitrary distinction among persons depending on their confirmed or suspected HIV serostatus or state of health (UNAIDS).

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Measuring HIV/AIDS Stigma and Discrimination Project Update: Project Update: SSOUTHOUTH A AFRICAFRICA

The Need for a Framework

One of the barriers to the development of effective strategies to address HIV/AIDS stigma and discrimination is the current lack of theoretical concepts and measurement tools. Efforts to incorporate stigma mitigation processes into HIV/AIDS programs have had to rely on anecdotal evidence and comparative evidence from other areas in the health field. To facilitate sound decision making, policy development, and strategic design of interventions, there is an urgent need for a clear understanding of, and specific data regarding, HIV/AIDS-related stigma and discrimination.

Objective

The objective of the POLICY Project’s “Stigma and Discrimination Initiatives” is to demonstrate how HIV/AIDS-related stigma and discrimination can be reduced using careful analysis and replicable interventions. The initiatives, based in Mexico and South Africa, are funded by the U.S. Agency for International Development (USAID). The aim of the projects is to develop indicators to measure internal and external stigma and discrimination as well as the impacts of interventions to address these issues. The identification and sharing of lessons learned will be an important result of the initiatives.

Project Focus

The focus of the South Africa stigma and discrimination initiative is on a generalized epidemic. Home to more than 70 percent of the world’s people living with HIV/AIDS (PLWHA), sub-Saharan Africa has been hit hard by the HIV/AIDS pandemic. In South Africa, an estimated 1-in-5 adults (15-49) is living with HIV/AIDS.

This project targets three essential groups in South Africa’s response to HIV/AIDS: associations of PLWHA; national government departments; and faith-based leaders. Project activities seek to identify, document, and disseminate indicators of internal and external stigma; and identify, review, document, and disseminate “best practice” interventions for reducing stigma and discrimination. Preliminary indicators will be developed through a two-day consultative seminar in late November 2002. These indicators will be validated in the field through qualitative data collection within the three sectors. A second consultative seminar will be convened in May 2003 to refine the indicators.

Approaches

Conducting a media scan on selected South African newspapers, community radio stations, and television stations to review the frequency and nature of their representation of PLWHA in the media, and their efforts to address and change the stigma associated with HIV/AIDS;

Working with PLWHA to show how public perceptions of PLWHA, as influenced by the media, can be improved and, thus, contribute to reducing stigma and discrimination;

Working with representatives from selected national government departments to examine how HIV/AIDS workplace policies are able to reduce HIV/AIDS-related stigma and discrimination within the workplace; and

Working with faith-based leaders to help them better understand stigma and how stigma adversely affects the availability and accessibility of services. As faith-based organizations are often providers of essential services, this project component seeks to address their concerns and difficulties in destigmatizing HIV/AIDS in their communities.

Implementation

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POLICY collaborates with a range of public and NGO partners. Key players in the implementation of the initiative include the Centre for the Study of AIDS at the University of Pretoria; Chief Directorate: HIV/AIDS, STDs, and TB, National Department of Health; and Insideout in collaboration with Evalnet, two local research agencies.

Accomplishments to Date

Establishment of reference groups. To create local ownership of the initiative, POLICY immediately began meeting with key stakeholders. Four references groups (one national group and three subgroups) have been established and each has held two meetings.

The groups include representatives from Faith Organizations in HIV/AIDS in Partnership (FOHAP); the Chief Directorate: HIV/AIDS, STDs, and TB, National Department of Health; AIDS Law Project; the National Association of People Living with HIV/AIDS (NAPWA); the Anglican Church; Positive Muslims; the Inter-departmental Committee on HIV/AIDS; and various civil society organizations. During the initial meetings, reference group members outlined roles, functions, and expectations, and expressed strong support for the project.

Literature Review. A review of the relevant literature was undertaken by the Centre for the Study of AIDS. The final draft will be presented at the first consultative meeting on November 27-28, 2002.

Identifying stigma and discrimination indicators. Insideout, a local research organization in South Africa, is responsible for facilitating the research component of the project—namely, to identify and validate a set of indicators for HIV/AIDS-related stigma and discrimination.

Next Steps for the Upcoming Quarter

First consultative workshop and presentation of the review of the literature (November 2002); Field work (December 2002 - March 2003); and Media scan to examine the representation of PLWHA (January - March 2003).

Stigma: A powerful and discrediting social label that radically changes the way individuals view themselves and are viewed as persons (Canadian HIV/AIDS Legal Network).

“Internal” or “felt” stigma refers to the personal shame associated with HIV/AIDS and the fear of being discriminated against on account of the illness.

Discrimination: Any measure entailing any arbitrary distinction among persons depending on their confirmed or suspected HIV serostatus or state of health (UNAIDS). Also referred to as “enacted stigma.”

POLICY is funded by USAID and is implemented by the Futures Group International, in collaboration with the Centre for Development and Population Activities (CEDPA) and Research Triangle Institute (RTI).

POLICY Project Tel: 202.775.9680c/o Futures Group Int’l Fax: 202.775.96941050 17th Street, NW Email: policyinfo@tfgi.comWashington, DC 20036 Web: www.policyproject.com

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Whitman-Walker Clinic is a non-profit community-based health organization serving the Washington, D.C. metropolitan region.   Established by and for the gay and lesbian community, our Clinic is comprised of diverse volunteers and staff who provide or facilitate the delivery of high quality, comprehensive, accessible health care and community services.  Whitman-Walker Clinic is especially committed to ending the suffering of all those infected and affected by HIV/AIDS.

Whitman-Walker Clinic Legal Services Program is a non-profit, volunteer-based provider of HIV-related pro bono legal services. Our volunteers and staff are dedicated to the provision of direct legal services. In order to provide such legal services, the Program shall engage in direct representation and advocacy, the provision of training and technical assistance to individuals and organizations, community education and outreach, law reform, and related legal efforts. The Program's provision of legal services is premised on the recognition that HIV-positive status creates distinct legal needs and that addressing those needs promotes an individual's health and well-being.

The Legal Services Program serves individuals who are HIV positive, generally in matters related to their diagnosis, regardless of race, gender, sexual orientation, age, religion, national origin, or immigration status. In all other cases, Legal Services may represent families, domestic partners, or friends of HIV-positive individuals, but only to the extent that their interests are congruent with the interests of the HIV-positive individual.

Clients are referred to us in a number of ways. Many clients come through WWC's Access Center, where they go through a formal intake process with a social worker. Other clients first come to WWC's Medical Services Department, but express a desire for legal assistance. We also receive referrals from sources outside WWC, especially hospital social workers, other AIDS organizations and private physicians. Clients also learn of our services through advertisements and notices in community publications and through word of mouth. Individuals are eligible for our legal services regardless of whether they participate in other WWC programs.

In calendar year 2001, we provided approximately 1,765 services to 889 new clients. Additionally, the Legal Services Program provided telephone consultations on more than 4,899 separate HIV-related legal problems.

Virtually everyone living with HIV/AIDS encounters legal problems associated with his or her health status. Many cannot afford the legal representation they need to fight for their rights to continue working, maintain access to health care, or ensure their confidentiality. Founded in 1986, the Legal Services Program of the Whitman-Walker Clinic is the only Washington, DC area program offering comprehensive pro bono legal services to people living with HIV/AIDS.

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Messages from James D. Wolfensohn, President, World Bank Group,to World Bank employees regarding HIV/AIDS

My best wishes to all of you as we enter the new Millennium. The first message that I would like to send to you in this special New Year concerns AIDS. We must recognize that AIDS is a special illness. It is highly stigmatized; it means facing fear, denial and shame. Many Bank Group staff are afraid to talk about it. They are not aware that the impact of the disease can now be dramatically reduced, and that the Bank Group has clear policies regarding recruitment, employment and medical coverage related to HIV/AIDS.

I have learned that lack of knowledge about your rights and the institution's policies has caused unnecessary stress and concern, and may even have stopped some staff from taking advantage of treatments to improve their health and save their lives. Therefore, I am restating our policies and procedures for easy reference for all staff.

I also want to remind you about the confidentiality and sensitivity surrounding health matters in general and HIV/AIDS in particular. Staff may choose to share information related to health issues with colleagues, but it must remain their choice. Whatever their choice, it is the responsibility of all of us to create a compassionate and caring environment for colleagues with any type of illness, whether it is inWashington or in a Bank Group office elsewhere.

Nondiscrimination

You cannot be denied employment, confirmation, promotion, or be terminated solely because of your HIV status. Health insurance coverage is available for all eligible employees and their dependents regardless of HIV status. Health insurance premiums are not affected by HIV status.

Confidentiality

You cannot be forced to take an HIV/AIDS test. You do not have to report your HIV status to the Bank.You have a right for your medical treatment to be kept confidential.

Access to Treatment & Insurance

Our medical insurance covers all drugs and treatments for HIV/AIDS, including anti-retroviral medications. These medications have been widely used in developed countries, where they have dramatically reduced AIDS-related deaths. As for any other illness, the same co-payment rates apply to expenses related to HIV/AIDS, up to established out-of-pocket ceilings, after which the Bank's medical insurance will pay 100%. If adequate treatments are not available locally, non-emergency evacuation procedures can be used for HIV/AIDS and its related illnesses. In case of disability resulting from AIDS, the Bank's disability insurance is available. In case of death resulting from AIDS, the applicable benefits are payable to your beneficiaries.

You can also find basic information on policies related to HIV/AIDS, in the UNAIDS booklet, "Information for United Nations Employees and Their Families." HSD has recently distributed them to all staff.

To ensure this receives urgent attention, a Working Group has been established, under the leadership of Richard Stern, HRSVP, to develop and implement an institutional approach to managing AIDS in the workplace. The immediate goal is to ensure staff take full advantage of existing policies and procedures. For that purpose we have asked Dr. Ana Maria Espinoza, an HSD physician experienced in treating

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HIV/AIDS, to handle staff questions about the medical aspects of HIV/AIDS. In addition, the Working Group will be consulting you to develop an action plan for managing AIDS in the workplace.

We can only win this AIDS battle by working together. The objective is simple: no more Bank Group staff or their family members should die from AIDS.

James D. Wolfensohn

* * * * *

Over a year ago, as my first message in the new Millennium, I sent all staff a letter about HIV/AIDS. I restated our policies on nondiscrimination, confidentiality, and access to treatment and insurance. Over the past year, I have taken many opportunities to emphasize both my personal commitment and that of our institution in the battle against HIV/AIDS, a threat to people and families, as well as the economic development and security of the world. My concern for our own Bank Group staff and families is of equal importance, and we all have a role in ensuring a compassionate and caring work environment.

You have received information folders on HIV/AIDS. I sent a kiosk announcement about these folders on February 14. I am now writing to you personally to ask you to take the opportunity of using these tools to expand the HIV/AIDS dialogue in your offices with staff and families. This disease is surrounded by the stigma of fear and denial. As managers, you have a role in breaking this cycle. The important thing is to talk about it, to create in our own offices a safe place to do this. I know this may not be a comfortable subject to address and probably even more so within our own Bank family, but the key to fighting this scourge is prevention. And that requires candid discussion.

Our country offices should be examples of good workplaces in their communities. When it comes to HIV/AIDS, you know best how to do this in harmony with the cultures in which you live and work. I will do everything I can to support you and I urge you to work closely with UN partners, NGOs, community resources in bringing the message into the office. Facilitate the work of staff HIV/AIDS volunteer committees within your offices or establish one, if you don't yet have such a group. Gather staff and families together.

Thirty-four million people in the world live with HIV/AIDS. Two-thirds of them reside in sub-Saharan Africa, but this is a global problem. The time to act is now—wherever you are located.

This IS a matter of life or death and our objective is clear: no more staff or family members should die of AIDS. I am asking for your help in reaching this goal. Our AIDS in the Workplace group under Kathy Sierra, the HSD AIDS Response team, the Staff Association, your HR Teams, your regional managers are all ready to assist you in any way they can. This is one battle we cannot lose.

Sincerely,

Jim Wolfensohn

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Statement on behalf of Congresswoman Barbara LeeABA World AIDS Day Roundtable DiscussionNovember 25, 2002

Each of us brings a different perspective to this meeting, and I would just very briefly like to provide you with our outlook on the AIDS crisis as it relates to the future of law, policy and advocacy, as well as this year’s theme of “Stigma and Discrimination”.

As many of you already know, Congresswoman Lee has been at the forefront of the HIV/AIDS issue in Congress almost since she began serving in 1998. We have gone through highs and lows over the years as various bits of AIDS legislation have found their way through Congress. And we have come a long way from the point where the International AIDS crisis was not even mentioned in governmental circles, and even from two years ago when bilateral AIDS funding was stalled at a mere $135 million.

Although we have now reached the point where a global consensus has emerged on the importance of the AIDS pandemic, and where we can actually talk about spending billions instead of millions on global AIDS, we still have a very long way to go.

The formation of the Global Fund to Fight AIDS, TB and Malaria illustrates this point very well, as the actual level of funding has fallen far short of the initial pledges, and remains very far below the estimated $7 to $10 billion that the UN Secretary General has requested for the fund. Designated to be the world’s key vehicle for disbursing funds to the poorest countries, which lack the resources to combat AIDS, the Fund has been undermined from the outset by the stinginess of rich governments, including the United States.

We all know that AIDS is the greatest humanitarian health crisis of our time. Today, Africa is the epicenter of this horrific pandemic, with over 28.5 million people infected. However, HIV/AIDS cases are skyrocketing in South East Asia, Latin America and the Caribbean, and Eastern Europe. The vast majority of all these cases, over 95%, are in the developing world.

AIDS is leaving its horrific imprint on many countries by threatening to devastate their social fabric, infrastructure, economies and political stability. We cannot continue to ignore the magnitude of this problem, as our future security and stability is inextricably tied to the developing world. Considering this threat to humanity, the United States has not moved quickly enough to build a comprehensive strategy to address this global plague.

This past Congress, the Congresswoman worked closely with many of her colleagues on both sides of the aisle and in both chambers to build the kind of necessary support and authority for our federal agencies to create and implement a frame work for just such a comprehensive strategy to fight these diseases

This effort was embodied in, H.R. 2069, the Global Access to AIDS, TB and Malaria Prevention and Treatment Act, which passed in the House unopposed last December. The bill was further considered and expanded in the Senate, and eventually passed with all 100 Senators supporting. Unfortunately, and despite the urgency of the situation, negotiations to reconcile the two bills faltered over the establishment of new authorities for various agencies, and because of the overall cost of the final bill.

Earlier in the year, the Congresswoman again worked with many members of the House and Senate to increase the U.S. contribution to fight AIDS, TB and malaria by including an additional $200 million in a supplemental appropriations bill. This was new money that the President stripped from the bill.

Despite the most recent reports by the UNAIDS Director, Peter Piot, that Africa alone could absorb $6.5 billion today without any modifications to its existing infrastructure, we still do not see a greater commitment, including a much larger financial commitment from the White House.

They continue to argue that the U.S. government wants to see results from the money we are already spending to fight AIDS, TB and malaria before we make any significant increases. This course of action is inexcusable and sets a dangerous precedent.

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The scope of this crisis is so great that we cannot be effective unless we build on our existing programs, and allow them to work without the constant burden of Congressional or Presidential approval.

Currently that United States spends approximately $1.3 billion on fighting AIDS, TB and malaria. This includes funding at USAID, the CDC, NIH and the Global Fund to Fight AIDS, TB and Malaria.

The United States should be spending in FY03 at $2.5 billion on these efforts, with at least a $1 billion contribution to the Global Fund.

If we can afford billions dollars to pay for a war that will take lives, we should be more than willing to spend an equal amount on HIV/AIDS prevention and treatment to save lives, given the magnitude of the pandemic.

We must actively invest and involve ourselves in the struggle against AIDS, because whether we like it or not, we are all invested as members of the human family. As much as some people would like to characterize AIDS as an African problem, it is our problem as well.

AIDS will not be beaten without a strong global commitment and a massive injection of resources. The observance of World AIDS Day emphasizes the truly global nature of this pandemic. And it reminds us that the solution needs to be equally global. We cannot allow bigotry on the part of some to serve as a justification for the failure to save millions of lives.

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