Gruskin, Sofia JD*; Ferguson, Laura MSc*; Peersman, Greet PhD†; Rugg, Deborah PhD‡
The 2001 United Nations General Assembly Special Session (UNGASS) Declaration of Commitment on HIV/AIDS (DoC) emphasizes the centrality of human rights to an effective HIV response. It includes the commitment to “enact, strengthen or enforce, as appropriate, legislation, regulations and other measures to eliminate all forms of discrimination against and to ensure the full enjoyment of all human rights and fundamental freedoms by people living with HIV/AIDS and members of vulnerable sub-populations.”1
Every country in the world has made rights-related commitments in relation to HIV,2 and the protection of human rights is widely recognized as a vital basis for HIV programming.3 This recognition calls for attention to the broad legal and policy environment; the systematic integration of key human rights principles into programmatic responses (including nondiscrimination, participation, the availability, accessibility, acceptability and quality of services as part of the core components of the right to health); ensuring that HIV services reach most-at-risk populations; and transparency and accountability for how policies and programs are carried out.4-6 Highlighted in this approach is the responsibility of all sectors of government, beyond the health sector, to recognize and address the economic, social, cultural and political factors that may influence both the causes and consequences of HIV.7
Countries submit reports to the Joint United Nations Programme on HIV/AIDS (UNAIDS) every 2 years on their progress toward fulfilling UNGASS commitments, including in relation to human rights. The National Composite Policy Index (NCPI) forms part of this reporting process. The human rights section of the NCPI is completed by a variety of stakeholders, including nongovernmental organizations (NGOs), people living with HIV, national human rights commissions, United Nations agencies and private sector representatives. Countries can adopt the methodology they regard as most appropriate, but UNAIDS suggests that a consultant be charged with doing a desk review, interviewing appropriate nongovernment respondents, collating data and presenting this information for discussion at a final consultation involving government and civil society stakeholders.8
The NCPI comprises 53 questions, including 15 questions that encapsulate the core components of a rights-based approach and focus on the legal and policy environment, the availability of HIV-related services and vulnerable subpopulations. All questions require yes/no answers and some also allow for explanatory comments.8 The NCPI aims to assess the status of HIV-related national policies on prevention, treatment, care and support, human rights, civil society involvement, gender, workplace programs, stigma and discrimination, and monitoring and evaluation. Focusing on the data from the NCPI and UNGASS narrative reports, this article highlights pertinent information drawn from these publicly available data and suggests ways for using that information for advocacy, legal reform and further assessment.
Civil society has been very active in the UNGASS reporting process in some countries, while being fairly disengaged in others. These differences are vital for understanding national HIV responses and for highlighting specific strengths or weaknesses in relation to human rights and government action on HIV more generally.9,10 Two questions included in the NCPI require that civil society organizations rate attention to human rights in the national HIV response in relation to the current reporting round (2008) and the previous reporting round (2006) so as to track self-assessment of improvements and deteriorations in country performance over time.8 These 2 questions have not been included in this analysis. In-depth discussion of civil society involvement in the UNGASS reporting process is included elsewhere in this supplement.11
UNGASS Country Progress Reports from 133 countries in 2008 included responses to questions in the human rights section of the NCPI. The NCPI is not a single indicator but a series of indicators designed for joint examination; analysis of individual indicators is intended to occur alongside consideration of other indicators within the NCPI. Thus, analysis was done based on information from 2 sources: answers to questions in the human rights section of the NCPI and, when available, other pertinent information from countries' narrative reports. The focus was on reported progress in the development and implementation of human rights-related national HIV policies and strategies. Among the 133 countries, response rates ranged from 88% to 100%, depending on the question.12,13 Trend analyses for individual NCPI indicators were not carried out due to limitations in the data available for each indicator across different reporting rounds. Given the importance accorded to concurrent analysis of multiple NCPI indicators, insufficient data were available for valid trend analyses.
Below, we provide a brief overview of reporting rates and highlight key findings relevant to human rights. In each subsection, the analysis of key indicators is followed by discussion of issues that merit consideration based on qualitative information from the reports and, where available, data reported under other relevant NCPI indicators.
Overall Approach to Human Rights in the HIV Response
Of the 133 countries that completed the NCPI human rights section, 123 (92%) report that their HIV policy or strategy includes explicit references to the promotion and protection of human rights.13 In addition, 57 countries (43%) report amending policies and legislation to render them consistent with National AIDS Control policies (eg, harmonizing HIV and drug control laws).13 Reportedly, most such amendments have been introduced in the previous 2 or 3 years.
Issues to Consider
Despite the professed attention to human rights in national HIV responses, only 29 (22%) of the countries that completed the human rights section of the NCPI report using performance indicators or benchmarks to measure compliance with human rights standards in the context of their HIV efforts.13 Reported use of such indicators or benchmarks is higher among countries with generalized HIV epidemics (32%) than those with low/concentrated epidemics (18%).13
Many countries acknowledge a need for increased attention to enforcement of laws and policies, but it remains difficult to determine whether human rights-supportive laws and policies are actually implemented. Almost all examples of measures of human rights compliance cited by countries related only to attitudes toward people living with HIV.
Legal Systems and Services
A number of countries report the existence of human rights enforcement mechanisms including independent national institutions (91 or 68% of reporting countries) or focal points within governmental departments (31 or 23%).13 In addition, 71 countries (53%) note ombudspersons, human rights commissions and NGOs as the sorts of mechanisms that record, document and address cases of discrimination experienced by people living with HIV and most-at-risk populations.13
In 62 countries (47%), HIV-related legal services are reportedly available, whereas private sector law firms or university-based centers that provide free or reduced-cost legal services to people living with HIV are reportedly available in 55 countries (41%).13 More countries in generalized epidemics report the existence of such services than do countries with low-level or concentrated HIV epidemics.
Issues to Consider
The fact that these systems and services exist does not guarantee their functionality or that they are used by affected populations. Useful information about this can be gleaned from the comments provided in countries' NCPI reports; indeed, many countries highlight the limited capacity of staff working in these systems and services to perform their duties. Underscoring the need to analyze NCPI indicators in conjunction with other related information, Fiji, for example, reported the existence of an independent national human rights institution but also explained “The existing mechanisms are weak due to limited capacity and lack of understanding of HIV issues. This is exacerbated by a lack of rights-based HIV legislation and the absence of a national HIV policy.”14 Similarly, Kenya, although it reported good availability of HIV-related legal services, also stated that “most women and children are not able to access legal protection.”15
Legal and Regulatory Protections Against Discrimination
The majority of countries report that laws and regulations are in place to protect people living with HIV (89 countries or 67%) and vulnerable subpopulations (94 countries or 71%) from discrimination.13 Based on the categories listed in the NCPI, these include women, young people, injecting drug users, men who have sex with men, sex workers, prison inmates and migrants or mobile populations.16 In addition to required reporting on these groups, countries can specify other populations that they consider particularly vulnerable to HIV. Persons with disabilities and children were the 2 additional groups cited most often, with 11 countries (8%) reporting the existence of relevant protections for these populations.13
Vulnerable subpopulations for whom protections are most commonly reported are women (90 countries or 68%) and young people (77 countries or 58%).13 Furthermore, 37% of countries (with little regional variation) report that laws or regulations exist to protect migrants against discrimination and 40% (but only 11% of high-income countries) report that protective legislation is in place for prison inmates.13 As shown in Table 1 below, laws that protect populations whose behavior may be deemed to be in conflict with certain laws are highly uncommon.13
Compared with the relatively high percentages of countries that report laws and policies in place to protect people living with HIV and most-at-risk populations from discrimination (the Caribbean region being an exception), notably fewer countries report mechanisms in place to record, document and address any cases of discrimination, as can be seen in Figure 1.
Issues to Consider
“Protective legislation” is a term open to various interpretations. Few countries explain what kinds of “protective” legislation are in place or how the legislation is implemented. Iran reports protective legislation to ensure that drug users are exempt from prosecution while accessing harm reduction services.17 Conversely, Botswana specifies the existence of protections for women but, underscoring the insufficiency of the legislated protection, explains that “it does not include a provision on marital rape, nor does it create any positive obligations on the State to implement safe house support (i.e. a safe haven for survivors of violence), training for police, etc.”18
It is difficult to ascertain the effectiveness of legislated protections against discrimination if mechanisms are not in place for recording and addressing cases of discrimination. Although implementation of laws and policies is a general issue of concern, some countries highlight the need to capture information relating to the degree of implementation in this area specifically. Bosnia and Herzegovina reports having laws in place to protect vulnerable subpopulations from discrimination but note that “rights are nominal without actual implementation.”19 Similarly, the Brazilian report notes that “A good juridical platform is in place. The principal problem is the observance of these laws and their enforcement in all circumstances.”20
HIV Screening and Employment
Eighty-five countries (64%) report having a policy that prohibits HIV screening for general employment purposes. There is significant variation between countries with different epidemic types: 59% of countries with low-level/concentrated epidemics (58 countries) and 79% of countries with generalized HIV epidemics (27 countries) report such a policy.13
Access to Prevention, Treatment, Care and Support Services
Almost all countries report policies of free prevention (126 countries or 95%), antiretroviral therapy (ART) (122 countries or 92%) and care and support services (113 countries or 85%), with little variation by geography or type of epidemic.13
At face value, these data suggest a strong commitment to making these essential HIV services available to everyone who might need them. However, as the existence of such policies is only a first step, countries are also asked to briefly describe, given resource constraints, what steps are in place to ensure that policies are implemented.
With respect to prevention, few countries provide details about the specific services that are available. The fact that a wide range of services potentially could fit within the prevention rubric (ranging from provision of abstinence-only information to condom provision alongside other prevention activities) highlights the limitations of the information presented.
With respect to ART, qualitative information highlights important differences in the content of policies governing free ART provision. Some countries note that while ART is free, patients have to pay for drugs to treat opportunistic infections; others restrict access to free ART to certain population groups such as pregnant women, patients with TB, or young children. Botswana reports excluding noncitizens and refugees from ART provision, and some countries, including the Democratic Republic of Congo and the Lao People's Democratic Republic, report limited coverage despite the existence of ART-related policies.18,21,22 Little information is available on how policies address the prioritization of ART distribution in countries where demand exceeds supply or how access for vulnerable and/or hard-to-reach populations is to be considered. None of the NCPI reports provided details of the content of policies governing free care and support services.
Issues to Consider
Eighty-three percent of countries (111) report that a “policy to ensure equal access for women and men, to prevention, treatment, care and support” is in place.13 However, 12% of those countries also report the existence of laws, policies or regulations that present obstacles to effective HIV prevention, treatment, care and support for women.13
Similarly, although most countries (100 countries or 75%) report policies to ensure equal access to HIV-related services for most-at-risk populations, half of those countries (52 countries or 52%) report the existence of laws and policies that present obstacles to their ability to provide effective prevention, treatment, care and support for at least one of these same populations.13
Figure 2 includes data from a subset of 94 countries, which report nondiscrimination laws or regulations that specify protections for vulnerable subpopulations. It shows, by subpopulation, the percentage of those countries that also report the existence of laws, regulations or policies that create obstacles to effective HIV services for these same populations.
Overall, 84 countries (63%) report having laws and policies in place that present obstacles to the provision of effective prevention, treatment, care and support for vulnerable subpopulations, with injecting drug users (51 countries or 38%) and sex workers (59 countries or 44%) most commonly cited as the groups affected.13 Important regional variations are evident, as shown in Table 2.
In contrast to sub-Saharan Africa, a high percentage of countries in South/South East Asia report the existence of such laws or policies affecting sex workers (79%), men who have sex with men (71%) and injecting drug users (64%). Notably, no countries in East Asia or Western/Central Europe report the existence of obstructive laws or policies for women or men who have sex with men.13
The 2008 NCPI data indicate that a large number of governments have reported on human rights issues, that a high percentage of them reported supportive laws and policies and that a substantial number reported the existence of legal and policy barriers to universal access to HIV prevention, treatment, care and support services. The analysis of these data can serve as a resource for a wide range of stakeholders at international and country levels.
Uses of Existing Data
At the global level, variations in findings by region and by type of epidemic can be of great use. For example, the relative paucity of reported specialized legal services that reach HIV-infected marginalized populations in low-level/concentrated epidemic settings highlights the need for development of such services in these settings across the globe.
The value of NCPI data for national-level efforts remains underexplored. One of the NCPI's strengths is that it encourages governments to acknowledge obstructive laws and policies that hamper efforts to achieve universal access to HIV-related services. The NCPI data reflect whether such obstructive laws and policies are reported to exist and the accompanying comments in the NCPI and narrative report can help to elucidate their content and impact. Revisions are needed of laws and policies that present obstacles to an effective and human rights-based HIV response, such as those that criminalize sex work, drug use and consensual sex between males; preclude access to condoms and to needle exchange programs for prisoners; require parental consent for legal minors to access HIV-related services; and criminalize HIV transmission. NGOs can use these data to push for law and policy reform, and researchers can use the data to identify issues that remain poorly understood and require further investigation.
Concurrent Analysis of Multiple Indicators
Although supportive laws and policies may exist, their coexistence with other laws and policies that impede access to services highlights the need for in-depth analysis of all available information. For example, effectively assessing national legal and policy environments requires knowledge about whether countries report the existence of nondiscrimination laws or policies which specify protections for identified vulnerable subpopulations; whether they report the existence of laws, regulations or policies that present obstacles to their ability to deliver effective HIV prevention, treatment, care and support for these same populations; the explanatory comments provided alongside the answers to both of these questions; and other relevant additional comments in the narrative report. It is only by analyzing data from these various sources, along with determining whether those responsible for implementation and those affected are aware of the legal and policy environment, that one can develop a realistic picture of HIV-related laws and policies, their impact on access to HIV services and on the lives of people living with HIV, and other affected populations.
Data Limitations and Efforts to Overcome Them
Specificity of Content of Relevant Policies
Although it is useful to ascertain the existence of laws and policies, a necessary next step is to examine their content, scale, scope and quality, as well as the related program coverage. For example, despite a relatively high percentage of countries (64%) reporting a policy prohibiting HIV screening for general employment purposes, such policies rarely consider the informal sector (including microfinance initiatives and small enterprises). Capturing the limitations of such workplace (and other) policies can highlight areas where reform is needed.
Implementation of Laws and Policies
Even with increasingly supportive legal and policy environments being introduced in many countries, their positive impact will only be realized through implementation and ongoing monitoring and evaluation. The existence of legislation does not necessarily translate into implementation if, for example, there is no dedicated financial allocation to state or provincial levels in the budget or policy directive. It is positive that governments have noted shortcomings in this area, but it is critical that the issues this raises are considered in interpretation of any NCPI data going forward.
National-Level Monitoring of Human Rights in the HIV Response
The indicators in the human rights section of the NCPI were designed to capture information relating to the main components of a rights-based approach to HIV. The lack of indicators in use within countries to monitor and evaluate the range of human rights concerns relating to these UNGASS commitments is a gap that needs to be addressed. Many of the other UNGASS indicators have been incorporated into national monitoring and evaluation frameworks, and the NCPI indicators could usefully be included in those frameworks as well. This could improve governmental accountability for their HIV-related human rights commitments and encourage countries to invest greater effort on this front.
Clarity Around Vulnerable Subpopulations
Given that the category of “vulnerable subpopulations” encompasses women, youth, sex workers, men who have sex with men, injecting drug users, migrants and prisoners (leaving only a subset of adult males who are not considered vulnerable), the utility of such categories for directing the HIV response to where it is most needed is called into question. Moreover, it is inadequate to pool “women” together as a vulnerable group without to some extent disaggregating the different groups of women who might be more/less vulnerable, including women who are injecting drug users, migrants, or prisoners. Furthermore, the “vulnerable subpopulations” noted in the UNGASS materials can be confusing. Some “vulnerable subpopulations” are so designated on the basis of sociodemographic characteristics (such as women and youth), whereas others are so defined based on behaviors (such as sex work or injecting drug use). Finally, it is important to consider differences that may exist among subpopulations rather than to assess overall attention to “vulnerable subpopulations.”
Despite the limitations of the UNGASS data, and even without independent verification, the NCPI provides the most complete overview of national HIV responses currently available. These data can help inform NGO advocacy and promote governmental accountability for their international commitments.23 In addition, the process of completing the NCPI and the resulting data provide important opportunities for countries to reflect on their policy and programmatic response with key stakeholders including people living with HIV.
Civil society has a critical role to play in investigating, monitoring and providing supplemental information to inform laws, policies, programs and advocacy efforts. The NCPI data can be used to direct those efforts and to focus more attention on human rights in national HIV responses. This is especially true with respect to those laws and policies that present obstacles to potentially effective HIV services for vulnerable subpopulations.
The richness of the UNGASS data is missed in a quantitative analysis of individual indicators; a more nuanced analysis of the human rights dimensions of the NCPI is required. These indicators should be concurrently considered, and information from the comments boxes and the detailed information contained in the narrative reports and, if available, shadow reports should be consulted in analysis and planning. Additionally, this information can be used to assess the extent to which governments have incorporated their international human rights obligations into national HIV laws, policies and programs and the extent to which civil society regards governmental efforts as being appropriate and adequate. By identifying shortcomings in the fulfillment of human rights, a refocusing of efforts is possible, which can aid governments to meet their international obligations and achieve effective and appropriate responses to HIV.
We are grateful to Riley Steiner (Program on International Health and Human Rights, Harvard School of Public Health) for superior assistance with references and to Ju Yang (Monitoring and Evaluation Division, UNAIDS) for her excellent data management work.
© 2009 Lippincott Williams & Wilkins, Inc.