With a focus on NY law, this powerpoint presentation is designed to provide a basic understanding of NY law as of 2006 regarding HIV testing of pregnant women and newborns, and an overview of the law on the rights of mothers concerning perinatal treatment decisions and treatment choices for their children.
Between March 22 and April 17, 2007, amFAR, the American Foundation for AIDS Research, conducted an online survey to assess stigma facing HIV-positive women in the United States. The survey revealed that HIV-positive women continue to face a high level of stigma in both their personal and their professional lives. The results showed pervasive negative views of HIV-positive women and a high level of discomfort interacting with them. The majority of respondents were uncomfortable with having an HIV-positive woman as a healthcare or childcare provider; most believed that HIV-positive women should not have children. Twenty percent of respondents would not be comfortable with having an HIV-positive woman as a close friend. Many of these responses were based on misinformation and lack of understanding about how HIV is transmitted. These results document how persistent HIV stigma creates obstacles for HIV-positive women on both the personal and professional levels, and how lack of information creates and sustains stigma. This slide presentation, created by Dr. Susan J. Blumenthal of amfAR, summarizes the survey results. The complete survey results will be available in the Resource Bank after amFAR has fully mined the data collected.
The International Community of Women living with HIV/AIDS (ICW) provides guidelines for responsible involvement of HIV positive women in medical, socioeconomic and other research concerning women living with the virus. Included are a checklist to measure the effectiveness and inclusiveness of various aspects of research methods, as well as links to further resources. This document will be particularly useful to researchers working with HIV positive populations, advocates working on issues related to participatory research, and HIV positive people considering participation in research studies.
This guide for young women and those working with them offers activities to motivate and enable young women to advocate for change and to mobilize others to do the same. A chapter on HIV/AIDS encourages discussion of the specific challenges facing women when it comes to HIV prevention, access to treatment and other services, and discrimination. It also provides guidance and activities to help young women become leaders in addressing these problems in their communities. Other chapters encourage them to take on leadership roles in addressing violence against women and promoting human rights, reproductive health, and economic justice. The manual has been field-tested by young women in Africa, Asia, the Caribbean, Europe, and Latin America, and its themes are equally applicable in the United States. Produced by World YWCA and supported by the United Nations Population Fund.
Capacitación de Mujeres Jóvenes para Liderar el Cambio es una guía que ha sido diseñado para dar apoyo al desarrollo de las habilidades y destrezas de las mujeres jóvenes, y los que trabajan con ellas, para capacitarlas para que asuman el liderazgo en los temas que les conciernen. Ofrece participar activa y plenamente en la motivación y potenciación de las mujeres jóvenes para afirmarlas en sus habilidades catalizadoras del cambio y así movilizar a otras para que hagan lo mismo. El capitulo sobre VIH/SIDA promueve la discusión de los desafíos que enfrentan a las mujeres jovenes en los ámbitos del aceso de tratamiento y otros servicios, y la discriminación. Es una herramienta flexible para aprender y explorar los derechos humanos y la violencia dirigida contra las mujeres así como temas de imagen corporal, autoestima y desarrollo de cualidades para el liderazgo. Mujeres jóvenes de África, Asia, el Caribe, Europa y América Latina ya han realizado en cinco talleres pruebas de campo con este manual, y sus temas son aplicables igualmente en los E.E.U.U. Producido por el YWCA Mundial, con el apoyo del Fondo de Población de las Naciones Unidas.
On 8/27/07, the California Senate overwhelmingly approved a bill to allow HIV-positive men to have their sperm washed and used for fertility treatments. The bill would allow the washed sperm to be used in artificial insemination and in vitro fertilization under certain guidelines. Since 1989, California has prohibited HIV-positive people from donating sperm, blood or tissue in an attempt to curb the spread of the virus. The law has prevented HIV-positive men from using reproductive technologies that lower the risk of transmitting HIV to their partners. The bill would allow couples to use reproductive technology as long as the HIV-positive donor's sperm is processed to minimize the risk of HIV transmission; informed mutual consent is documented; and the couple uses American Society for Reproductive Medicine-approved sperm processing procedures. According to the Kaiser Family Foundation and Deborah Cohan, medical director of the Bay Area Perinatal AIDS Center, California is one of two states where couples with an HIV-positive man cannot undergo fertility treatments with his donated sperm.
Over 50 diverse non-profit organizations including the Center for HIV Law and Policy, HIV/AIDS service organizations, reproductive rights advocates, womens and other policy organizations and religious groups together submitted a letter to the members of the State-Foreign Operations Appropriations Conference Committee, asking that they maintain the Senate-approved $461 million funding level for bilateral family planning and reproductive health programs and urging them to also adopt the $40 million contribution for the United Nations Population Fund as recommended by the House of Representatives. The United States has fallen behind on its efforts to improve global health when adjusted for inflation, current U.S. funding is 41% below FY 1995, yet since that time the number of women of reproductive age in the developing world has increased by approximately 275 million women. These women and men lack access to basic reproductive health care such as contraception (reducing the number of unwanted pregnancies and, therefore, reducing the number of abortions), prenatal and pediatric care, and HIV prevention services and testing. Given the steep funding reductions that have taken place over the last decade, the minimal but critical increase called for by the Senate is warranted
This study compared health indicators, health status, behavioral risks and access barriers among self-identified African American, Hispanic, Asian-Americana and white lesbian/bisexual and heterosexual women in Los Angeles county. Among the racial groups, regardless of sexual orientation, African American, Hispanic and Asian American women had worse health outcomes than white women for example, less access to preventative services. Hispanic and African American women overall had lower life expectancies, higher death rates from heart disease and greater levels of overweight and obesity than white women. The effect of sexual orientation across racial groups, however, is that self-identified lesbians and bisexuals are less likely to receive preventative health services, more likely to be overweight and more likely to engage in risky behavior such as smoking and heavy alcohol consumption than their heterosexual counterparts. The results of the study underscore the importance of considering factors that are not recognized as influential in womens health such as sex, social, cultural and economic power. More studies that capture sexual orientation as a health factor are needed.
This fact sheet prepared by the Kaiser Family Foundation provides new statistics on health coverage and describes the major sources of health insurance for non-elderly adult women ages 18-64, including employer-sponsored coverage, Medicaid, individually purchased insurance, and Medicare. It also summarizes the major policy challenges facing women in obtaining health coverage, and provides data on the more than 17 million women who are uninsured In the United States, nearly 1 in 5 women under the age of 65 do not have health insurance.
This report summarizes discussion from two international electronic fora in which advocates, service providers, and HIV-positive women discussed services and policies related to the sexual and reproductive health of HIV-positive women. While the discussions spanned numerous countries and cultures, common threads appeared regardless of the geographical or cultural context. These threads provide lessons for all advocates seeking to promote the well-being of HIV-positive women. Issues such as confidentiality, domestic abuse, and reproductive rights were discussed, with the overarching issue being the high degree of stigma and discrimination experienced by HIV-positive women. Most strikingly, the discussions revealed widespread violations of the human rights of HIV-positive women as a result of the stigma and discrimination that they faced. These violations provided a backdrop to virtually all other topics discussed, creating major obstacles to the attainment of appropriate care and services by HIV-positive women. Another major theme was the lack of the most basic services responsive to the needs of HIV-positive women. Women described significant barriers at the domestic, community, regional and national level in realizing their rights and sexual and reproductive health. Among those mentioned included: inaccessibility of health centers; lack of respect for female patients' rights and judgmental attitudes among health care workers. The report is published by EngenderHealth, Harvard University, International Community of Women Living with HIV/AIDS, Ipas, and the United Nations Population Fund.
This report prepared by the Center for Health and Gender Equity focuses on the role that female condoms can play in HIV prevention, and how the U.S. needs to be the leader in global distribution of, and education about, female condom use. The document’s executive summary explains that, “as international donors and country governments move forward with plans to make male circumcision more accessible and invest millions of dollars into developing microbicides and vaccines, they cannot afford to overlook the only available HIV prevention intervention that was designed to allow women to initiate protection: female condoms.”
This UNAIDS policy paper is aimed at those with a leadership role in HIV prevention, treatment and care. It highlights the need for strengthening HIV prevention, key actions for an effective response, and core principles underlying these actions. While it appears to be intended primarily for low-income countries, the content is relevant for any efforts to overcome barriers to increased prevention efforts. The paper addresses barriers such as limited capacity to track and demonstrate the results of HIV-prevention programs; the lack of effective and efficient coordination of stakeholders; and limited institutional and human capacity to manage and deliver HIV-prevention programs. The paper also identifies essential policy actions, such as building and maintaining leadership from all sections of society, including people with HIV, and supporting the mobilization of community-based actions. To the extent that the policy position paper focuses on problems inherent in low-income countries, it provides a useful framework for those working in resource-poor areas of any country, including the United States.
This guide aims to provide sexual and reproductive health program planners, managers, and providers with the information necessary to integrate voluntary counseling and testing (VCT) for HIV within their services. VCT is not merely the simple assent to testing, but rather "the process by which an individual undergoes confidential counselling to enable the individual to make an informed choice about learning his or her HIV status and to take appropriate action." Counseling for VCT consists of pre-test, post-test, and follow-up counseling. VCT is a human-rights based approach to HIV testing and treatment that enables patients to make informed decisions; it has been shown to be an effective strategy to facilitate behavior change for HIV prevention, as well as to reduce the stigma and discrimination associated with HIV. The guide discusses the benefits of VCT and the barriers to implementation, and provides specific steps for each stage of implementing VCT, including the initial assessment of community need, planning, implementation, monitoring, and evaluation. The guide was produced by the United Nations Population Fund and the International Planned Parenthood Foundation.
Because many women do not access health services outside of pregnancy, maternal health services provide an excellent resource for HIV interventions tailored to the needs of pregnant and postpartum women. Such services also provide the opportunity to provide treatment, care, and support for HIV-positive mothers and their families. This guide focuses on the prevention of HIV infection among pregnant and post-partem women, with some discussion of related issues such as prevention of unintended pregnancies, mother-to-child transmission, and treatment for HIV-positive women. The guide can be used to strengthen the integration of HIV prevention into existing maternal health services and build the capacity of health workers to address the prevention needs of pregnant and postpartum women. The guide is particularly useful for planners, program developers, and trainers who are looking for opportunities and guidance to address the underlying gender inequities that present obstacles to successful HIV prevention interventions. For example, it provides guidance for helping women negotiate condom use, advocating with policymakers to change discriminatory legislation, and working with community leaders to raise awareness about common harmful practices. The guide was produced by the United Nations Population Fund and EngenderHealth.
HIV-positive women need access not only to appropriate health care and antiretroviral medications, but also to HIV treatment support. This paper discusses the unique barriers women face to Access to Care, Treatment, and Support (ACTS). Issues include the limitations of health centers as points of access, the lack of research on the effects of antiretrovirals that is specific to women, and the stigma and discrimination that keep women from obtaining the care and support they need. The paper argues that HIV-positive women are in the best position to understand these issues, and that they therefore should be involved in attempts to identify and address these barriers. The paper could be useful for HIV-positive women and their advocates, as well as health-care providers, who seek to understand and reduce gender inequalities and obstacles to HIV treatment. Produced by the International Community of Women Living With HIV/AIDS.
A report based on hearings and meetings with consumers, health care practitioners and social service providers about epidemiologic trends, and successful service models for addressing the needs of women at greatest risk of HIV in New York State. The report includes both findings of the Advisory Council's exploration of these issues, and recommendations for further action. As the Council states in its report, "Stigma, discrimination and the lack of coordinated systems of services for women remain the most significant barriers to effective HIV prevention and care for women across New York State."
This policy vision paper outlines the key priorities for women with HIV as identified by a group of young HIV positive women from across Eastern and Southern Africa who met in Durban in April 2004. The meeting was a dialogue organized by the International Community of Women Living with HIV/AIDS (ICW) in partnership with Youth Against AIDS Network (YAAN) and Gender AIDS Forum (GAF). Three primary priorities are identified: 1) Access to sexual and reproductive rights, 2) Access to screening, treatment, and prevention, and 3) meaningful participation and action of women with HIV in decision-making at the community, national, and regional levels. Within these three priorities, several specific issues and examples are identified, citing experiences of real women with HIV. The vision paper then provides a call to action, identifying specific steps that must be taken to remedy these shortcomings. The paper provides a useful starting-point for HIV-positive women and advocates seeking to identify, address, and mobilize around HIV issues specific to women, or anyone seeking to understand the unique obstacles facing HIV-positive women. While many of the issues are identified by women around the world, the themes of disenfranchisement, marginalization, and stigma are universal. Produced by the International Community of Women Living with HIV/AIDS.
This fact sheet, created by the American Foundation for AIDS Research (amfAR), describes the rising rates of HIV/AIDS among women in the United States and worldwide, and outlines the factors that have contributed to this rise. For example, it describes economic and social factors that increase women's vulnerability to HIV, such as disproportionate earning power and assets due to prescribed gender roles, and limited access to education, healthcare, and other resources that help women prevent and treat HIV/AIDS. Other factors that may lead to the disproportionate rise in HIV/AIDS among women include biological factors, gender-based violence, and sex differences in HIV treatment. The fact sheet advocates ten policies to address these factors, such as making women a priority in national HIV/AIDS strategies, increasing public knowledge and decreasing stigma and discrimination, reducing barriers faced by women in disadvantaged populations, and investing in the development of female-controlled prevention methods. The fact sheet is a useful resource for those seeking to illuminate the rising HIV/AIDS rates among women and the factors that contribute to it, and those advocating policy changes to address these factors. It is also useful to view it in conjunction with the amfAR survey on the stigma faced by HIV-positive women in the United States, which is posted separately in CHLP's Women's Advocacy Resource Collection.
Language from the document itself, created by the Center for Reproductive Rights, explains that, “this briefing paper addresses the fundamental human rights standards that governments must uphold in creating PMTCT programs. These standards include requirements of informed consent, provider-patient confidentiality, and health-care access without discrimination. The briefing paper concludes with recommendations for government action to ensure that women are treated with dignity and respect through every phase of HIV/AIDS prevention, treatment, and care.” The paper also discusses the disproportionate effect that HIV has had on women, and how that effect is exacerbated when women are pregnant.
This commentary, published by the Canadian HIV/AIDS Legal Network and endorsed by more than 40 organizations around the world, including the Center for HIV Law and Policy, is a comprehensive, excellent critique the the April 2007 UNAIDS Guidane Note on HIV and Sex Work. Noting the Guidance Note's inconsistency with prior UN statements on the importance of protecting of sex workers' basic rights, the commentary addresses UNAIDS' failure "to consider seriously the precarious human rights situation of sex workers, and the way abusive and violent poicing and ill-conceived national laws undermine sex workers' rights. It also fails to discuss the human rights of sex workers as workers, including their right to work, their right to a livelihood of their choosing, and their right to workplace safety."
The Kaiser Family Foundation commissioned a racially diverse group study of lower-income women with HIV/AIDS in Philadelphia, Los Angeles, Miami and Savannah to hear directly from them about their lives and the challenges they face in obtaining a full-range of health care services. The specific issues addressed were barriers to receiving care, interactions with the health care system, relationships with providers, challenges unique to women, knowledge level about their illness, effects of HIV/AIDS on other aspects of their lives and the information they need and sources they trust. Ideas for improving access to quality health care were distilled from the womens insights. First, time of diagnosis is a critical moment to inform, support and connect women with HIV/AIDS services. How women were told about their status affected when and if they sought treatment. Second, gender specific services should be available to women such as mental health support, child care assistance, transportation and access to female providers. Third, women who were connected to local AIDS services organizations, services and networks of information had better health care experiences. Fourth, making Medicaid available to more women with HIV/AIDS and continuing to support ADAP. Fifth, use providers, peers, internet, TV/radio to inform women about HIV/AIDS and especially to reach out to Latinas with HIV/AIDS. Although not mentioned in the conclusions, a persistent problem for women with HIV is the stigma and prejudice they face from health care professionals who are not HIV specialists. Women still experience denial of services from dentists, gynecologists and general practitioners after disclosing their status. Stigma, and perception of social risk, affects when and whether women disclose their status or pursue and receive care for a multitude of health issues. This study highlights the imperative that all health care professionals be trained and educated about HIV/AIDS issues.
This document summarizes the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW) and describes the status of CEDAW in the United States, and describes CEDAW’s impact on several issues, including HIV/AIDS. It provides excellent insight into how CEDAW has been received by the federal government, and state and local government declarations with regard to CEDAW. It also specifically discusses the issues unique to women and HIV/AIDS and how CEDAW addresses these problems.
The Convention on the Elimination of All Forms of Discrimination Against Women (“CEDAW”), addresses women’s rights within the political, social, economic, cultural, and family life. It calls for state parties to overcome barriers of discrimination against women in areas of legal rights, education, employment, health care, politics, and finance, and sets benchmarks. Particularly relevant to HIV/AIDS issues are: the definition of discrimination against women (Article 1); a mandate that states condemn discrimination in all its forms and ensure a legal framework that provides protection and embodies the principle of equality (Article 2); mandate of the end of discrimination in employment, including the right to work, employment opportunities, equal renumeration, free choice of profession and employment, social security, and protection of health, including maternal health (Article 11); requirement of steps to eliminate discrimination in health care, including family planning access (Article 12); a focus on the unique problems that rural woman face in access to health care and adequate living conditions (Article 14); requirment of steps to ensure equality in marriage and family relations, including the right to freely determine the number and spacing of children (Article 16). Article 18 requires parties to submit reports periodically to the Committee on the Elimination of Discrimination Against Women on measures they have taken to give effect to the Convention.
As a treaty, CEDAW is binding on all parties that ratify it; those who sign but do not ratify it are obligated not to act contrary to the purpose of the convention under Article 18 of the Vienna Convention. CEDAW also has an optional protocol that allows individuals to submit complaints to the Committee arguing that their rights have been violated by the state party, and which allows the Committee to investigate grave or systematic violations of CEDAW. Although the United States has signed CEDAW, it has failed to ratify it, placing it among a small minority of countries including Iran, Sudan, and Somalia.
This is an analysis of how gender and sexuality influence HIV risks, transmission, and treatment, with an eye toward the obstacles that community service organizations must overcome in order to provide services successfully. It outlines factors in the following categories: socio-cultural factors, such as gender inequity in marriage, traditional gender roles, and homophobia; economic factors, such as poverty and lack of access to education; political factors, such as inaccurate or ineffective HIV prevention efforts and discriminatory laws; and program and services access factors, such as stigma and lack of access to treatment. Reviews of these factors are followed by recommendations for dealing with them. Throughout the document there are examples of how these issues have impeded HIV prevention and treatment, and examples of successful programs to contend with them. There are also references to useful international legal documents, and a list of key resources at the end of the document. This resource could prove useful for community service organizations seeking to address gender and sexuality issues that arise, as well as for anyone interested in the challenges these issues pose and successful ways to cope with them.
This timely report sets forth the severity of the HIV/AIDS epidemic among African Americans and the failure of the United States government to respond to this crisis. The report presents the staggering statistics demonstrating HIV/AIDS rates among African Americans rivals that of many African countries receiving funds as part of the President’s Emergency Plan for AIDS Relief (PEPFAR). While African Americans bear the brunt of the HIV/AIDS epidemic in the United States, U.S. policy-makers continue to respond as if HIV/AIDS were an epidemic suffered outside United States borders. The report discusses the causes contributing to the HIV/AIDS crisis among African Americans, looking at issues such as risk factors, gender bias, homophobia, stigma, drug use, imprisonment, and inequalities in health care. It then proposes an action agenda involving African-American communities, the public and private sector, researchers, and international agencies to address this multi-faceted health and human rights crisis.
More women than men reported that their health care provider usually presumed that they were heterosexual; this kind of attitude among health care providers is an important factor in the selection of a provider, particularly among women. Providers need to change their assumptions and approaches to interviews of potential patients, replacing heterosexist assumptions with integrated questions about sexual identity and ensuring that all aspects of the assessment and treatment process are safe for LGBT people.
This article, provided by Abt Associates, presents results of focus groups of drug-involved women who have sex with men, conducted in Bridgeport, CT, Providence, RI, and San Juan, PR, to assess interest in and opennse to using microbicides effective against HIV transmission in the even they become available. The article also describes how aspects of women's different sexual lives might affect issues of concern to them if and when they tried microbicides.
Seven health care professionals, advocates, and HIV-positive women respond to the question, "What do you consider to be the most important treatment or health issues facing women with HIV today?"
This document includes discussion of medical and psychological needs in women with HIV, challenges to establishing and maintaining appropriate treatment for HIV-positive women, and the need for more clinical studies focused on women. Advocates and health care professionals may find this information particularly useful.
This issue, published in English and Spanish, focuses on the rights of sex workers. It addresses: 1) police raids and “rescue” services that are often counterproductive to securing sex workers’ rights and ensuring no underage involvement in sex work; 2) how criminalization of sex work further stigmatizes the people it is meant to help and encourages violence against them; 3) participation of sex-workers in approaches to HIV treatment and prevention; 4) targeting trafficking and the entry into sex work as separate from targeting those living as sex workers; 5) a case study in how the United States PEPFAR “anti-prostitution pledge” has influenced the response to female sex workers’ HIV/AIDS needs in Nigeria; 6) sex worker organizing in Madagascar; unfriendly encounters with police among Manhattan sex workers; 7) an analysis of the rhetoric used in newspaper articles about sex work and how that influences attitudes and responses; and 8) peer-led HIV/AIDS responses in New South Wales, Australia.Additional issues of Research for Sex Work are available here.
Esta edición, publicado en ingles y español, enfoca en los derechos de trabajadores sexuales. Se dirigió 1) las ataques de incursiones por la policía y los grupos reformadores que son contraproducentes a las metas de asegurar los derechos de los trabajadores y de asegurar que los minores no entrañan en el trabajo sexual; 2) la manera en que la criminalización del trabajo sexual estigmatiza más los persones que se trata de ayudar y se promota la violencia contra ellos; 3) la participación de los trabajadores sexuales en las maneras de prevención y tratamiento de VIH; 4) distinguir el tráfico humano y la entrada al trabajo sexual como diferente que los trabajadores sexuales en sí mismas; 5) un estudio de caso en como el “Compromiso Anti-Prostitución” del E.E.U.U. ha influido la reacción a los necesidades de VIH/SIDA de las trabajadores sexuales en Nigeria; 6) organizando a los trabajores sexuales en Madagascar; encuentros no amistosos con la policía entre los trabajadores sexuales en Manhattan; 7) un análisis de la rétorica usada en los artículos de diarios que discuten el trabajo sexual y como este influye los actitudes y las repuestas; 8) las repuestas de un grupo de persons que viven con VIH/SIDA sobre este sujeto en New South Wales, Australia.Ediciónes adicionales de Investigación para el Trabajo Sexual son disponible aquí.
This article outlines the information currently available on the effects of HIV/AIDS and antiretroviral therapy on the menstrual cycle and menopausal symptoms and treatment, with summaries of and references to relevant clinical studies. Included is information on menorrhagia (excessive bleeding during menstruation) and amenorrhea (absence of menstruation), osteopenia (bone thinning) and osteoporosis (bone atrophy) and HIV, hormone replacement therapy, and menopausal symptom management. The article also covers screening tests that should be offered to women at various points, diagnostic tests for menstrual abnormalities, and medications for preventing or reversing osteoporosis. This article may be useful to women with HIV and their medical providers in anticipating and responding to health issues related to the menstrual cycle, and for advocates attempting to establish the unique medical and service (and funding) needs of HIV-positive women.
Guttmacher Institute outlines the changing sexual and reproductive health needs of people living with HIV as the disease has become a manageable chronic disease. Included is information on fertility issues and childbearing, prevention of unplanned pregnancy, and effective transmission prevention for discordant couples. The article also addresses common issues of discrimination and bias in medical and other settings, such as disclosure of HIV status without consent, coerced abortion and sterilization, and unwillingness to accept the sexuality of HIV positive people, that affect access to adequate sexual and reproductive health care. This article may be particularly useful to medical providers serving HIV positive people, and to advocates seeking an understanding of common issues facing people living with HIV with regard to reproductive health.
In a case brought by the Brennan Center for Justice at NYU School of Law, two organizations (AOSI and Pathfinder International) that received funding under the United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003 (the Leadership Act) sued the U.S. Agency for International Development (USAID), among others, seeking to enjoin their narrow reading of the Leadership Act’s provision requiring funded organizations to have a policy expressly opposing prostitution and sex trafficking. In May, 2006, the U.S. District Court for the Southern District of New York had ruled that this requirement violated the organizational plaintiff’s First Amendment rights, restricting their privately-funded speech and forcing them to adopt the U.S. government’s views in order to be eligible for funding. The Court of Appeals remanded in view of proposed new HHS and UNAIDS guidelines to determine whether a preliminary injunction is appropriate. In February 2008, the plaintiffs filed an amended complaint to add Global Health Council and InterAction (international development and public health groups) as plaintiffs; Global Health Council and InterAction then moved for a preliminary injunction on behalf of their members. HHS represented to the court that its July 2007 guidelines will go through a notice and comment process by April 2008, after which the court will assess the constitutionality of the revised guidelines. For copies of pleadings and other information, go to http://www.brennancenter.org/content/resource/aosi_v_usaid/
This complaint was filed on behalf of a woman who was tested for HIV during her pregnancy without her consent, followed by the unauthorized disclosure of her positive HIV serostatus, the involvement of state child protective services, and the forced antiretroviral treatment and temporary removal of her newborn infant. The complaint alleges that the defendants’ actions violated the Americans with Disabilities Act, the Rehabilitation Act, the New Jersey Law Against Discrimination, the New Jersey AIDS Assistance Act, the United States Constitution, and the New Jersey Constitution. The complaint further alleges tortious interference with parental rights, negligence, failure to investigate, and a violation of privacy and familial relationships. The complaint thoroughly explains the factual basis for each allegation and describes how the defendants’ unlawful actions caused the plaintiff unnecessary suffering. Although based in part on New Jersey law, the complaint provides a useful template for advocates representing parents whose difficulties or disagreements with health care providers result in the involvement of child protective services and challenges to their fitness as parents. The complaint’s state law claims could easily be adapted to meet the requirements of other state laws.
In a case brought by the Brennan Center for Justice at NYU School of Law, two organizations (AOSI and Pathfinder International) that received funding under the United States Leadership Against HIV/AIDS, Tuberculosis, and Malaria Act of 2003 (the Leadership Act) sued the U.S. Agency for International Development (USAID), among others, seeking to enjoin their narrow reading of the Leadership Act’s provision requiring funded organizations to have a policy expressly opposing prostitution and sex trafficking. In May, 2006, the U.S. District Court for the Southern District of New York ruled that this requirement violated the organizational plaintiff’s First Amendment rights, restricting their privately-funded speech and forcing them to adopt the U.S. government’s views in order to be eligible for funding. The opinion may also be useful to those looking for a source in which to discuss HIV among marginalized groups. The opinion discusses the larger context in which the debate takes place, citing the high rates of HIV among some populations sex workers and the difficulties in reaching this marginalized community. The Court of Appeals for the Second Circuit remanded in view of proposed new HHS and UNAIDS guidelines to determine whether a preliminary injunction is appropriate. In February 2008, the plaintiffs filed an amended complaint to add Global Health Council and InterAction (international development and public health groups) as plaintiffs; Global Health Council and InterAction then moved for a preliminary injunction on behalf of their members. HHS represented to the court that its July 2007 guidelines will go through a notice and comment process by April 2008, after which the court will assess the constitutionality of the revised guidelines. For copies of pleadings and other information, go to http://www.brennancenter.org/content/resource/aosi_v_usaid/
This opinion holds that an HIV-positive mother’s refusal during pregnancy to take antiretroviral medication (ARVs) to reduce the risk of transferring HIV to her fetus does not constitute an act of neglect or abuse under New Jersey law. New Jersey’s Division of Youth and Family Services (DYFS) filed this action against a mother after her child was born, alleging abuse and neglect of her child. The court rejected the state’s argument on several grounds. First, the court held that a pregnant woman’s right to choose what medications she will take is protected under her right to privacy, which includes “the ability to refuse medical treatment, even at the risk of her death or the termination of her pregnancy.” Her decision to refuse ARVs was protected from state interference even though it would increase the risk of transmission to her fetus. Second, the New Jersey child abuse statute requires proof that the child was harmed as a result of the parent’s actions. Because the statute protected only born children, the state had to demonstrate that the mother’s actions while pregnant resulted in harm to the child after it was born. The state, however, failed to demonstrate that the child was HIV-positive, and thus could demonstrate no harm. Moreover, even if the child were HIV-positive, there would have been no guarantee that the child would not have been born HIV-positive even if the mother had taken ARVs, since the medication only reduced, rather than eliminated, the risk.
The L.V. case demonstrates the substantial rights pregnant women have to determine the course of their medical treatment and the complexities involved in mandating ARV treatment. While L.V. is not dispositive in other jurisdictions, it is persuasive, especially given the lack of case law on ARV administration during pregnancy.
The July 2008 version of the guidelines includes language that reaffirms an HIV-positive pregnant woman’s right to retain control over treatment decisions that affect her and her fetus. The Nov. 2007 version had inexplicably omitted language about a woman’s right to refuse ARV therapy without penalty—language that had been included in the Oct. 2006 version. That language has been reinstated, and is accompanied by other language in the document that makes explicit a woman’s right to be counseled in a way that will enable her to make informed decisions about her care.
The recommendations review the special considerations regarding use of antiretroviral drugs for pregnant women, provide new information regarding the use of Viracept, update the results of PACTG 076 and related clinical trials and epidemiologic studies, discuss the use of HIV-1 RNA and antiretroviral drug resistance assays during pregnancy, provide updated recommendations on antiretroviral chemoprophylaxis for reducing perinatal transmission, and provide recommendations related to use of elective cesarean delivery to reduce transmission risk. The guidelines address issues such as evidence of toxicities connected with certain antiretroviral drugs, the importance of information and counseling to pregnant women, various clinical scenarios and appropriate clinical responses, the significance and prevalence of drug resistance, different transmission risks associated with different modes of delivery, recommendations for perinatal and long-term follow-up of HIV-positive women and their infants, and the need for clinical research on factors such as drug safety, drug resistance, stopping antiretroviral therapy, and the use of rapid testing at delivery.
The following sets out the noteworthy changes contained in the July 8, 2008 guidelines in more detail:
1. The introduction eliminates any mention of monotherapy to prevent perinatal transmission. It also adds this language: "After counseling and discussion, a pregnant woman's informed choice on whether to take antiretroviral drugs either for her treatment or for prevention of mother-to-child transmission or to follow other medical recommendations intended to reduce perinatal HIV transmission should be respected. Coercive and punitive policies are potentially counterproductive in that they may undermine provider-patient trust and could discourage women from seeking prenatal care and adopting health care behaviors that optimize fetal and neonatal well-being."
2. In the sections on antepartum care and infant prophylaxis, the guidelines provide updated information about Viracept, the use of which had not been recommended because of "a process-related impurity." As of 3/31/08, the drug was deemed safe for use in all populations, including pregnant women and children.
3. The section on postpartum follow-up care now acknowledges not only the physical changes women go through after delivery, but also the psychological changes.
4. Also in the section on postpartum follow-up, the recommendation on continuation of ARV therapy after delivery has been changed. The recommendation now is to make this decision in consultation with the woman's HIV provider, taking into account several factors. The recommendation used to be continuation of therapy without mention of consultation or consideration of other factors.
5. The section on sterilization as a possible method of contraception now includes the following sentence: "Advance counseling and discussion about sterilization is strongly encouraged in order to enable the woman to make a well informed choice."
Public Law No. 110-293 is the reauthorizing legislation of the President’s Emergency Plan for AIDS Relief (PEPFAR), originally authorized in 2003.
The 2008 Act authorizes up to $48 billion for PEPFAR through 2013, an increase from the $15 billion originally authorized for the first five years in 2003. It also eliminates a statutory ban prohibiting HIV-positive foreigners from entering the United States, which made HIV the only disease for which there was a de facto statutory ban requiring a special waiver.
Regardless of this progress, some of the Act’s policies are subject to criticism for continuing certain policies of the 2003 Act. In particular, many organizations oppose the Act’s prohibition on funding for organizations that do not adopt organization-wide positions opposing commercial sex work, limiting the ability or organizations to work with the sex-worker community to prevent exploitation and promote safer practices. This provision has been the source of an ongoing legal challenge, Alliance for Open Society International v. United States Agency for International Development, 430 F.Supp.2d 222 (S.D.N.Y 2006), since its inclusion in the 2003 Act. Also, policies promulgated under PEPFAR, though not written into the law, also restrict the kinds of programs that may be funded, prohibiting the funding of safe needle exchange programs for intravenous drug users, despite the proven efficacy of such programs. Moreover, although the new Act no longer requires that one-third of the funds for prevention efforts be directed toward programs that promote abstinence-only programs, the Act requires a report to Congress if less than half of HIV prevention funds in a particular country be spent on abstinence and fidelity programs. Recent studies have demonstrated abstinence-only programs to be ineffective and, in many countries, marriage increases a woman’s risk of contracting HIV.
The Convention on the Elimination of All Forms of Discrimination Against Women (“CEDAW”), addresses women’s rights within the political, social, economic, cultural, and family life. It calls for state parties to overcome barriers of discrimination against women in areas of legal rights, education, employment, health care, politics, and finance, and sets benchmarks. Particularly relevant to HIV/AIDS issues are: the definition of discrimination against women (Article 1); a mandate that states condemn discrimination in all its forms and ensure a legal framework that provides protection and embodies the principle of equality (Article 2); mandate of the end of discrimination in employment, including the right to work, employment opportunities, equal renumeration, free choice of profession and employment, social security, and protection of health, including maternal health (Article 11); requirement of steps to eliminate discrimination in health care, including family planning access (Article 12); a focus on the unique problems that rural woman face in access to health care and adequate living conditions (Article 14); requirment of steps to ensure equality in marriage and family relations, including the right to freely determine the number and spacing of children (Article 16).
The Political Declaration, adopted by the United Nations General Assembly in June 2006, renews the General Assembly’s commitment to the Declaration of Commitment on HIV/AIDS issued in 2001. It commits to several actions as part of a human rights-based approach to HIV/AIDS, including: promoting prevention, treatment, care, and support; overcoming legal or other barriers to block access to effective HIV prevention, treatment, care, and support; ensuring pregnant women have access to antenatal care, including voluntary and confidential counseling and testing with informed consent; intensifying efforts to enact, strengthen, or enforce legislation and other measures to ensure those with HIV have full enjoyment of all human rights; eliminating gender inequalities and protecting women’s rights; and addressing the vulnerabilities of children affected by and living with HIV/AIDS.
The Declaration undertakes to provide comprehensive reviews of its progress in these areas in 2008 and 2011 within the annual reviews of the General Assembly.
It requests that the Secretary General of the United Nations include in his annual report the status of the implementation of the 2001 Declaration of Commitment.
The United Nations General Assembly Declaration of Commitment on HIV/AIDS represents “a global commitment to enhancing coordination and intensification of national, regional and international efforts to combat [HIV/AIDS] in a comprehensive manner.” It was unanimously adopted and signed by the 189 Member States at the United Nations General Assembly Special Session on HIV/AIDS in June 2001. This Special Session marked the first time that the General Assembly gave its exclusive attention to the HIV/AIDS epidemic.
The Declaration notes contributing factors to the spread of the epidemic, including discrimination, denial, lack of confidentiality, gender inequality, poverty, and illiteracy. It also reaffirms a human rights approach to HIV/AIDS, and declares a commitment to take action in the following categories, with a timeline for achievements by 2003 and 2005:
Fostering leadership at all levels of society
Prevention efforts
Care, support, and treatment
Realization of human rights and fundamental freedoms
Reducing vulnerability by empowering vulnerable groups such as women
Assisting children orphaned and made vulnerable by HIV/AIDS
Alleviating social and economic impact of HIV/ADIS
Furthering research and development
Responding to the HIV/AIDS needs created by conflict
Creating new, additional, and sustained resources
Maintaining the momentum and monitoring progress
While the Declaration is a UN document, the primary responsibility for imeplemtning its commitments rests with the states, who are required to conduct national periodic reviews of their progress. However, as declaration, this document is non-binding on states that have signed it.
This document is useful to those seeking to understand the many social, economic, cultural, and legal issues underlying the HIV/AIDS epidemics, as well as a human rights based approach to HIV/AIDS. It is also useful to demonstrate international responses to HIV/AIDS.
Five years later, the United Nations General Assembly reaffirmed its Commitment to the Declaration of Commitment in the Political Declaration on HIV/AIDS, available separately in the Resource Bank.
A revised and consolidated version of the original guidelines published in 1996, the purpose of the Guidelines is “to assist States in creating a positive, rights-based response to HIV that is effective in reducing the transmission and impact of HIV and AIDS and is consistent with human rights and fundamental freedoms.” The Guidelines are a joint project of the United Nations Office of the High Commissioner for Human Rights and UNAIDS. The consolidated guidelines include the revised Guideline 6, which reflects the human rights dimensions of access to HIV prevention, treatment, care, and support. The document consists of three parts: 1) twelve guidelines for state action; 2) recommendations for dissemination and implementation of the Guidelines; and 3) a description of the human rights principles underlying a positive response to HIV. The primary users are intended to be states, but it is also meant to inform intergovernmental organizations, non-governmental organizations, networks of people living with HIV, community-based organizations, networks on ethics, law, human rights, and HIV, and AIDS service organizations. It is also useful for any person looking for interested in a rights-based approach to HIV/AIDS and specific steps needed to implement such an approach.
This Handbook is intended to guide a human-rights based response to HIV for national human rights institutions, civil society organizations, networks of people living with HIV, and national AIDS programs. Government institutions and other partners of national institutions may also find it useful. It provides a useful outline of international legal principles that underlie a rights-based approach to HIV/AIDS, as well as specific steps institutions can take to further these principles. Such steps are outlined in the context of: outreach and in-reach for assessing national institutions and their partnerships, workplans, and priorities; integrating HIV into existing activities and programs; education and raising awareness on HIV and human rights; working with national AIDS programs; and achieving universal access to HIV prevention, treatment, care, and support. The Handbook is intended to be read alongside the International Guidelines on HIV/AIDS and Human Rights. The annex includes the Declaration of Commitment on HIV/AIDS and the Political Declaration on HIV/AIDS.
