Materials related to autonomy, informed consent and parental rights in the areas of HIV testing and treatment for pregnant women, newborns and young children
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.
These are the implementing regulations that followed NY's passage, in 1997, of universal, mandatory testing of newborns. The regulations require that hospitals and diagnostic and treatment centers offering prenatal obstetric, maternity and/or newborn services, in order to qualify for PCAP Medicaid reimbursement rates or fees, must provide a comprehensive array of diagnostic, treatment, case managment and related services to pregnant women, including the routine offer of HIV counseling and testing. The mandated offer of HIV testing to pregnant women -- accompanied by counseling allowing for informed, written consent -- is widely believed to be responsible for the near-elimination of perinatal HIV transmission.
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.
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.
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.
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 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.
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 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.
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 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.
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.
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.
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.
