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."
The Centers for Disease Control and Prevention (CDC) has recommended that everyone between the ages of 13 and 64 get tested for HIV when they seek health care. In response to CDCs push for expanded rapid testing with decreased attention on counseling and informed consent, a group of HIV legal, medical and service organizations came together to endorse a set of fundamental principles to guide the implementation of expanded voluntary testing for HIV. The fundamental elementsthat HIV testing must always be informed, voluntary, confidential, and supported by health care and other services, and that it is always most effective when offered by someone trusted and trustworthyapply to all persons. The 15 guidelines include: People living with undiagnosed HIV infection must be reached and offered testing. Any HIV testing program must provide the highest standard of care. Everyone offered testing must be educated about HIV and the significance of positive and negative test results. People who test positive for HIV antibodies must be linked to care. Expanded HIV testing must be carefully planned, implemented and monitored. People with HIV/AIDS and other stakeholders must be included in formulating plans for expanded testing. Patients human rights and informed consent are consistent with, and not opposed to, the goal of expanded HIV testing. Expanded HIV testing must be tailored to different clinical settings, populations, and patient needs. Clinicians, medical directors and other providers must receive training and education in delivering high-quality testing programs. Clinicians, medical directors and other providers must receive training and education in making appropriate service referrals and linkages to care. Community-based HIV prevention interventions must be expanded in tandem with efforts to expand voluntary HIV testing in healthcare settings. Special attention must be paid to the prevention and care needs of at-risk populations. Expanded testing and the provision of care to all existing and new HIV cases require new and adequate funding. Testing protocols must address insurance issues. Efforts to assist those with undiagnosed and untreated or unmonitored HIV infection must be evaluated. The primary authors of the Principles are the AIDS Foundation of Chicago, The Center for HIV Law and Policy, and Lambda Legal.
General Comment No. 3 was issued by the United Nations Committee on the Rights of the Child to promote the realization of the human rights of children in the context of HIV/AIDS as guaranteed under the Convention on the Rights of the Child (“CRC”). General Comment No. 3 identifies and elaborates on several rights of children and corresponding obligations of state parties with regard to HIV/AIDS issues such as discrimination, HIV-prevention information, health services, counseling and testing, mother-to-child transmission, and children affected and orphaned by HIV/AIDS. For example, General Comment No. 3 explains that under Articles 24, 13, and 17 of the CRC, children should have the right to access adequate information related to HIV/AIDS prevention and care through both formal and informal channels. It also states that “accessibility of voluntary, confidential HIV-counseling and testing services, with due attention to the evolving capacities of the child, is fundamental to the rights and health of children.”
General Comment No. 3 is especially useful for those seeking to understand how HIV/AIDS impacts children and families and what states’ obligations are to respond; it is best read alongside the CRC, available separately in the Resource Bank.
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 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 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.
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.
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/
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.
The Convention on the Rights of the Child (“CRC”) is an international treaty that discusses many of the rights children, some of which are in addition to those also enjoyed by adults. Particularly relevant to HIV/AIDS issues are: the right to life and corresponding obligation of the state to ensure to the maximum extent possible the survival and development of the child (Article 6); the right to seek, receive, and impart information (Articles 13, 17); the right to education (Article 28); the right to the highest attainable standard of health, including preventative health care, guidance for parents, and family planning education and services (Article 24); rights of disabled children to special care and to conditions that ensure dignity and facilitate active participation in the community (Article 23);the right to a standard of living adequate for physical, mental, spiritual, moral, and social development (Article 27); and the right to be actors in their own development and to express their opinions in all matters affecting the child (Article 12). States are also obligated to respect and ensure the rights in the CRC without discrimination of any kind, irrespective of the child’s or his or her parent’s disability (Article 2). The best interests of the child must be a primary consideration in all actions concerning children (Article 3). Moreover, states are obligated to ensure that the child as such protection and care as is necessary for his or her well-being, and to ensure that institutions, services, and facilities responsible for the care or protection of the child conform with the standards established by competent authorities, particularly in the area of safety and health (Article 3).
As a treaty, the CRC 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. State parties must submit periodic reports to the Committee on the Rights of the Child detailing their progress on upholding the treaty’s provisions.
General Comment No. 3 of the Committee on the Rights of the Child, available separately in the Resource Bank, analyzes the obligations of the CRC in the context of HIV/AIDS.
The United States has signed, but not ratified, the CRC.
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.
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.
The International Covenant on Economic, Social and Cultural Rights (the “ICESCR”) represents one-third of what is informally referred to as the “International Bill of Rights.” The other two thirds consist of the International Covenant on Civil and Political Rights (“ICCPR”), and the Universal Declaration of Human Rights. The ICESCR outlines universal economic, social and cultural rights; particularly relevant to HIV/AIDS issues are: the right to the highest attainable standard of health (Article 12); the right to education (Article 13); the right to work (Article 7); the right to enjoy the benefits of scientific progress and its applications (Article 15); the right to social security (Article 9); the right to an adequate standard of living, including adequate food, clothing, and housing (Article 11); and the right to participate in cultural life (Article 15).
As a convention, the ICESCR 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. Like the ICCPR, parties to the ICESCR are obligated to make periodic reports on their compliance with the convention to the Committee on Economic, Social and Cultural Rights. The Committee also prepares “General Comments” interpreting the ICESCR and exchanges general views on the rights of the ICESCR.
However, unlike the ICCPR, the ICESCR has no optional protocol that would allow victims of violations of ICESCR to present complaints before the Committee on ESCR against a state that has ratified the convention and violates its obligations; however, in April 2008, a UN working group approved a draft of such an optional protocol, and sent it to the UN Human Rights.
The United States has signed, but not ratified, the ICESCR.
