No More Broken Promises: Challenges and Opportunities for Key Populations in Demanding More Transparency, Accountability, and Participation in the Global Response Against the HIV and AIDS Epidemic
Tomás A. Chang Pico, Jillian Clare Kohler, Julia Hoffmann, and Lucy Mungala
Abstract
The global fight against HIV/AIDS continues to pose challenges: infection rates are on the rise in many settings, stigma and discrimination remain rampant, and the global response is under increasing financial pressure. There is a high risk of losing what has been achieved so far in the fight against HIV and AIDS, but also the momentum to meet the so-called Fast Track targets for 2030. In light of these trends, it is fundamental to focus on the human rights of key populations (KPs)—especially to health, non-discrimination, access to information, and to equal and meaningful participation in political and public affairs—by placing them at the center of the global HIV response. Such rights, and the demand for more transparency, accountability, and participation (TAP), have been recognized as both a necessary social justice imperative, and as a way to build more responsive, inclusive, and sustainable health systems. This article will argue that embracing TAP as key guiding principles of the global HIV response (especially in low- and middle-income countries) could have the potential to create the conditions for KPs to have their human rights fulfilled, and to expand their participation in the decision-making processes that guide the efforts against the epidemic. It will then propose a number of avenues for further engagement between different communities of practice in terms of research, agendas, and policy and practices that could be beneficial in maximizing the impact of the global efforts to end HIV/AIDS.
Introduction
During the last United Nations (UN) General Assembly High Level Meeting on Ending AIDS in 2016, then-UN Secretary General Ban Ki-moon presented a report requesting that the international community strengthen its support for human rights-based interventions as fundamental components of the fight against the HIV/AIDS epidemic.[1] He highlighted the importance of promoting gender equality and empowering the people most affected by the disease, that is, key populations (KPs).[2] In this article, the term ‘key populations’ refers to individuals and groups (organized or not as a civil society organizations) of: men having sex with men (MSM), transgender persons (TG), people who use drugs (PWUD), and sex workers and their clients.
According to the World Health Organization (WHO), KPs are extremely socially vulnerable individuals and communities, which often experience an increased impact from HIV/AIDS due to their limited access to public health services and their lack of voice in public affairs.[3] Additionally, because of social barriers, stigmatizing policies, and punitive laws that keep KPs away from services—different forms of violence, discrimination, criminalization, and marginalization—they are most likely to be exposed to HIV and to remain excluded from participating in, and benefiting from, the policies that should address their needs.[4]Along these lines, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM), underscore that beyond overcoming stigma and discrimination against KPs, their engagement and participation is critical to a successful HIV response everywhere, since they are both key to the epidemic and key players in the response.[5]
For decades, the international community—pursuant to international declarations and resolutions, such as the Declaration of Alma-Ata, the Paris AIDS Summit Declaration of 1994, various UN resolutions on human rights, the Declaration of Commitment on HIV/AIDS of 2001, and the Political Declarations on HIV and AIDS of 2006, 2011, and 2016—has reaffirmed the need to include the people that are themselves affected in the processes that lead to the design and implementation of the policies and strategies aimed to improve health outcomes and address HIV.[6] Such recognition is commonly known as the GIPA Principle, which is an acronym for ‘Greater Involvement of People Living with HIV/AIDS.’ Moreover, the recently approved Sustainable Development Goals (SDGs) include the achievement of “responsive, inclusive, participatory and representative decision-making at all levels” as a means to promote good governance and achieving sustainable development in a transparent, accountable, and inclusive manner.[7]
International organizations and donors, such as the UN, GFATM, and WHO, among others), are working to fulfill such commitments by creating and promoting spaces for KPs to participate both at the international and national levels. In many contexts, civil society organizations and key populations have been critical actors in calling for health programs, access to treatment, investments, political leadership, and human rights protection for addressing the HIV epidemic. These contributions have allowed the global fight against HIV to achieve major victories in the last decade: the global coverage of antiretroviral (ARV) therapy expanding, and the number of people who die from AIDS steadily decreasing.[8]
However, global efforts against HIV have now reached a historical juncture: HIV infection rates are on the rise in many parts of the world, while mounting challenges could further compromise the fight against the epidemic.[9] If these remain unaddressed, there is a risk of losing what has been achieved in the last decade and failing to meet the so-called Fast Track targets to end AIDS by 2030.
On the one hand, the effectiveness and legitimacy of the HIV response is weakening as KPs have no real ownership and their human rights continue to be violated, posing a long-term sustainability threat to the response.[10] Even when KPs now have more spaces for participation, for example via the Global Fund’s processes, this has not translated into any substantial change or more prioritization of KP’s needs in the HIV response.[11] On the other hand, the long-term sustainability of the HIV response is at stake. First, because available financial resources needed to cope with the HIV epidemic are either dwindling or not being allocated efficiently to reach KPs.[12] And second, because a big part of the resources are getting lost to corruption, mismanagement, and/or poor service delivery. [13]This means that by failing to respond and support those who need it the most, the international community will not see the end of the epidemic.
To counter these problems, civil society organizations, advocates, activists, and KPs’ organizations have been advocating worldwide for more transparency, accountability, and participation (TAP) not only in the health and HIV sectors, but more generally in political decision-making processes, as those impact KPs’ daily lives. Advocating for human rights to access health care, to be informed, and to participate meaningfully in public decision-making, has proven to be both a necessary social justice imperative and a way to build more responsive health systems.[14] Empowering KPs to have a say in how public resources are allocated and to monitor service delivery will help ensure the long-term effectiveness and sustainability of the response to the epidemic.
This paper will first describe the most important challenges that are affecting the effectiveness and sustainability of the global response against HIV/AIDS. Second, it will explain why we need to advance human rights-based TAP programming, and why they need to strengthen social movements of KPs, based on the lessons learned from communities’ participation in health policymaking and implementation. Lastly, it will introduce how cross-cutting TAP-based alternatives may lead to a more resilient, inclusive, and effective response against the HIV epidemic.