"Human rights barriers - including stigma, discrimination, violence and other abuses, negative social attitudes, and legal obstacles - contribute to the vulnerability to HIV..."
This Joint United Nations Programme on HIV/AIDS (UNAIDS) document offers guidance on why and how efforts to Fast-Track HIV prevention, testing, and treatment services can and should be grounded in human rights. UNAIDS has called on all countries to harness the next several years (until 2020) as a key window of opportunity for rapidly scaling up the HIV response in order to end the AIDS epidemic as a public health threat by 2030. Beyond being an imperative in themselves, human rights principles and approaches are understood to be critical to addressing barriers to HIV services and to achieving HIV targets. In particular, this document describes the key human rights principles, distilled from international legal standards, that should inform the scale-up of HIV services, and it briefly explains how these apply to HIV prevention, testing, and treatment services. This document also provides 3 checklists to support and guide governments, donors, programme implementers (including direct service providers), civil society groups, and other stakeholders when designing, monitoring, and evaluating HIV prevention, testing, and treatment services in order to ensure that the results are based on human rights principles, and approaches, and that they leave no one behind.
Human rights principles and approaches operate at multiple levels and in various ways to strengthen the HIV response by creating a more enabling environment for prevention, testing and treatment services. These include the:
- individual level - for example, awareness raising programmes for health care providers to reduce stigma and discrimination attitudes towards people living with HIV and key populations, protecting people against discrimination in health-care settings, ensuring respect for informed consent in testing and treatment, and protecting patient confidentiality all are mutually reinforcing measures that enable people to seek and access HIV services.
- policy and programme level - for example, human rights principles (see below) require and enable participation by affected communities in the design, implementation, and evaluation of HIV services, thereby making them more effective. Communities particularly affected include: adolescents and young people (particularly adolescent girls and young women), people living with HIV, sex workers, gay men and other men who have sex with men, transgender people, people who use drugs, and prisoners and other detainees.
- population level - for example, advancing human rights education - and promoting a culture of respect for human rights in law and more broadly in society - helps to engage, empower, and mobilise communities in protecting and realising their rights, including the right to quality services.
The following are the key human rights principles explored in the document; they are interconnected and mutually reinforcing:
- Availability, accessibility, acceptability, and good quality of services - sample guidance provided: To ensure the acceptability of HIV services among all populations in need, it is important that governments, health institutions, and providers follow technical guidance such as the World Health Organization (WHO) guidelines for HIV testing services, which include "the 5 Cs" (consent, confidentiality, counselling, correct test results, and connection to care), and the WHO guidelines on HIV treatment, including the recommendations tailored to specific populations. For instance, programmes should undertake activities to improve prevention and treatment literacy, as this enhances the acceptability and feasibility of HIV prevention and treatment.
- Non-discrimination and equality - sample guidance provided: Decisions about how and where to scale up services should be based on evidence, not on prejudicial assumptions or a discriminatory refusal to acknowledge which populations are most affected and in need of services. Similarly, HIV prevention messages that may lead to scapegoating of certain populations as vectors of disease should be avoided, whether they are sex workers, people who use drugs, gay men or other men who have sex with men, transgender people, or those considered to be foreigners. Stigmatisation decreases treatment adherence and will ultimately make it more difficult to achieve the universal access needed to end the AIDS epidemic.
- Privacy and confidentiality - sample guidance provided: The right to privacy in HIV services must extend beyond just preserving confidentiality of HIV status: It also must protect the confidentiality of other health or personal information obtained in the course of providing services. Disclosure of information may expose a person to stigma, discrimination, criminalisation, violence, or other abuse.
- Respect for personal dignity and autonomy - sample guidance provided: To achieve the world's HIV prevention and treatment targets, the free and full cooperation of all people is required. Ensuring this requires ending coercive approaches or involuntary programmes that undermine trust in, and cooperation with, health services, thus frustrating efforts to end the epidemic. Mass testing campaigns (e.g., door-to-door or village-to-village Know Your Status initiatives) carry heightened risks of leading to testing that is not fully voluntary or based on informed consent. It also potentially does not provide adequate protection of confidentiality or guarantee quality testing. UNAIDS and WHO - together with the International Community of Women Living with HIV (ICW) and the Global Network of People Living with HIV (GNP+) - have developed a set of 10 considerations relating to human rights, gender equality, and community engagement that are to be integrated in the process of country validation for the elimination of mother-to-child transmission of HIV (see page 23).
- Meaningful participation and accountability - sample guidance provided: In the context of HIV, people living with HIV have highlighted the central importance of their involvement to make the response effective, and the principle of greater involvement of people living with HIV (GIPA) has been repeatedly endorsed by UN Member States, including in all 4 UN General Assembly resolutions on HIV adopted between 2001 and 2016. "Meaningful participation is important for HIV services in various ways:
- HIV prevention, testing and treatment programmes necessarily raise culturally sensitive issues, such as sexuality and drug use. Involving communities in the design and implementation of programmes greatly reduces the risk of well-intended but inappropriate efforts, and it also increases opportunities for identifying potential social, cultural or legal barriers that will need to be addressed to facilitate access to services.
- Involving the populations most affected by HIV - including young people, women and girls, people living with disabilities, indigenous populations and key populations that need to be reached by HIV services - is essential to effective design and delivery of those services and ensuring they are available, accessible, acceptable and of good quality. Their involvement helps inform decisions about specific user-friendly prevention tools that are needed (e.g. which safer injection materials are needed and preferred or what information about age of consent and youth-sensitive approaches are needed to facilitate uptake of HIV services for adolescents and young people). The participation of these populations also helps identify potential human rights issues or other barriers to efficacy that need to be addressed, either within the service itself (e.g. improving the physical set-up of a clinic to maximize privacy) or in the environment in which it operates (e.g. police harassment and violence against particular communities, inadequate legal protection of privacy, barriers relating to age of consent, or stigma fuelled by criminalization).
- Similarly, participation is essential to achieving HIV treatment objectives. Antiretroviral therapy is lifelong, requiring ongoing engagement of people living with HIV. Successfully delivering other health services that support antiretroviral therapy adherence (such as opioid substitution therapy among some people who use drugs) also requires voluntary, ongoing engagement of those affected. Participation of communities and service-users can identify challenges for adherence to treatment that need to be addressed.....Experience shows that the inclusion of affected communities in the design and implementation of HIV treatment programs helps ensure that those programs are appropriate, and it contributes to changing social perceptions of HIV and people living with HIV (namely that they can be actively involved not just in designing HIV treatment programs, but also in implementing them)...
- Communities also have an important role in monitoring and evaluation: they can help to ensure that quality standards are met in HIV services, thereby contributing to greater trust of health services and prevention information and initiatives. Such trust and ongoing community engagement are necessary for achieving prevention and treatment targets..."
As outlined by UNAIDS, there are 7 key human rights programmes needed in every HIV response:
- Stigma and discrimination reduction programmes, such as the use of media campaigns to address discrimination, including in employment and educational settings, measuring stigma, and peer mobilisation and support for and by people living with HIV.
- HIV-related legal services, including legal information, advice and representation, alternative or community forms of dispute resolution, and strategic litigation.
- Monitoring and reforming laws, regulations, and policies relating to HIV, including reviewing the impact of laws and law enforcement on the HIV response, advocating and lobbying for law reform, engaging legislators, and promoting the enactment and implementation of laws, regulations, and guidelines that prohibit discrimination and support access to HIV prevention, treatment, care, and support.
- Legal literacy (Know Your Rights) programmes, including awareness-raising campaigns, community mobilisation and education, peer outreach, and telephone hotlines.
- Sensitisation of lawmakers and law enforcement agents on issues, including HIV and how it is and (is not) transmitted, the consequences of police activity on human rights and the HIV response, training for prison personnel, and information and sensitisation on HIV and its human rights aspects for legislators, prosecutors, lawyers, and traditional and religious leaders.
- Training for healthcare providers on human rights and medical ethics related to HIV, including training on ending discrimination in healthcare settings for individual providers, administrators, and regulators.
- Reducing discrimination against women in the context of HIV, including: programmes to strengthen the legal and policy environment to address gender inequality and violence; reforms of domestic violence laws and law enforcement to protect women and remove barriers to HIV services; reforms of property, inheritance, and custody to ensure equal rights for women; programmes to reduce harmful gender norms and traditional practices that contribute to HIV risk; and increased access to education and economic empowerment opportunities for women.
The document concludes with a call to not only respect and protect human rights in the delivery of HIV prevention, testing, and treatment programmes but also to address larger human rights barriers in the broader environment in which those services operate. "Failing to address these human rights challenges in the response - and paying insufficient attention to the needs of all populations, including young people, women and girls, people living with disabilities, indigenous populations and key populations - is holding back efforts to end the epidemic. It simply will not be possible to Fast-Track the HIV response and end the AIDS epidemic without addressing human rights."
UNAIDS website, June 6 2017. Image caption/credit: "A woman getting an HIV test in Indonesia" - UNAIDS