On October 2014, a group of around 30 researchers, activists and human rights experts met in Delhi at the invitation of Anand Grover, the outgoing Special Rapporteur on the right to the enjoyment of the highest attainable standard of physical and mental health. The meeting was convened as the handing over of the mandate to Dr. Dainius Puras, who was nominated for the post in June 2014, and as an opportunity for the new Special Rapporteur to establish contacts and dialogue with the various constituencies that have been closely engaged with the mandate, since its creation in 2002.
The meeting in Delhi was also a privileged occasion allowing us to take stock of political and normative struggles aimed at the realization of the right to health, their gains and challenges in multiple domains: communicable and non-communicable diseases, drug policies, sex work, sexual and reproductive health and rights, access to medicines, natural disasters and conflict situations. This article provides a bird’s eye view on how the struggles around HIV and AIDS and related policy responses were outlined in these rich and multilayered conversations.
HIV and AIDS, human rights and public health: challenges remain that are not exactly new
To begin with, at the meeting in Delhi, the political and policy debates around HIV and AIDS were fully recognized as one fundamental strand of thinking and action that contributed to pave the paths towards the legitimizing of the right to health in the early 2000s. It was once again pointed out that, since quite early in the epidemic, claims have been made for public health interventions regarding HIV to be to have a number of core principles: community participation, non-discrimination, availability and accountability. Though not highlighted in the discussion, one relevant aspect of this trajectory was that the creation of the UN Right to Health mandate was itself a tributary of the same stream. In 2000, Brazil could propose the creation of the mandate because the right to health is enshrined in its 1988 constitution, but it has taken that stance with much energy because, since the early 1990s, the state had been implementing an effective rights-based policy response, which included Brazil’s groundbreaking 1996 legislation guaranteeing free and universal access to ARVs.
Notwithstanding, on various occasions during the meeting, the question was often raised “if and how the lessons learned from the response to HIV and AIDS could guide analyses and actions to propel the realization of the right to health in other critical public health areas, such as non communicable diseases or natural disasters”? It was also noted that progress has been made in the realm of the right to health broadly speaking since 2002. Today a number of major policy institutions use the language of the right to health. The best illustration is perhaps the Global Fund whose guidelines are grounded in human rights standards of non-discrimination, informed consent and accountability.
On the other hand, many voices underlined that more than a few challenges remain in relation to the articulation between public health and human rights. For example, human rights premises are frequently not incorporated by major institutions comprehensively across different areas, as would ideally be expected. One illustration of this that was mentioned was the long and intensive WHO cycle of debates on the social determinants of health and the report resulting from this effort that, which to the surprising of many of those present, largely sidelined the right to health frame. Some participants, in fact, expressed the view that today – even more than ten years ago – public health practitioners and policy makers affirm, without much embarrassment, that saving lives does not require policy and programs to be also guided by human rights.
In the context of this article, it is particularly significant that this rift is once again pronounced in the realm of HIV and AIDS policy frames, where the primacy and logic of public health has long been questioned. This is visualized without great difficulty in the case of technological or evidence-based interventions clustered under the “test and treat” umbrella. Commenting on the marked shift underway in relation to HIV policy responses, Shiba Phurailatpan – from the Asian Pacific Network of People Living with HIV/AIDS (ANP+) – asked the group a difficult question: “Is this a trap that we ourselves have created? We have strongly called for human rights frame in order to improve the public health response and now we get technological-based public health interventions that may gloss over rights. ” In such a context, the summary presented at the end of meeting by Professor Daniel Tarantola was really inspiring in recapturing the diagram crafted in the early 1990s by Jonathan Mann to trace the necessary “optimum balance” between public health and human rights approaches to HIV and AIDS.
A related topic examined in the same round of discussion was the continuous “challenge to present evidence”. In Delhi, there was no disagreement that solid evidence is critical in all efforts aimed at the realization of the right to health. However, cautious and insightful observations were also made in respect to this critical area of current policy debates. It was pointed out, for example, that requests for solid quantitative empirical evidence is highly dependent on the audience. If these requirements can hardly be circumvented in the case of public health and biomedical communities, in other domains, which are also key for the implementation of the right to health, qualitative evidence is usually well received.
Another comment to be retained is that sound methodologies exist to prove glaring violations of the right to health, but it is much more difficult and complex to demonstrate the positive effects of human rights framed policies in terms of health outcomes. In relation, to this particular topic of discussion it is productive, perhaps, to recapture Richard Parker’s critical comment that “epidemiological figures may help but they do not resolve everything.”
HIV and AIDS and the Right to Health at the Frontlines
Past and present challenges in regard to the realization of the right to health in relation to HIV prevention, treatment and livelihoods were also looked at through the lenses of the affected communities – people living with HIV, LGBTI persons, migrants, sex workers and drug users – as well as in the round table on access to medicines.
HIV was central to the discussion on communicable diseases, in which three presenters addressed the topic from distinct but complementary angles. Richard Elliot (Canadian HIV/AIDS Legal Network) emphasized that fighting stigma and discrimination was and remains a non-negotiable principle of human rights-framed responses to the epidemic, a view that resonated with the discussions that took place in the panels on LGBTQI persons, drug policies and users, sex work and obstacles experienced by migrants in crossing boundaries but also accessing health care.
Elliot correctly reminded us that the women’s health movement was the first to have articulated health and rights claims, even before the surge of the HIV epidemic, and Vikas called attention to the fact that reproductive health and rights have been, and still are, critical in the lives of women living with HIV. Both these interventions imply the need for the AIDS movement to cross boundaries and work closely in partnership with other constituencies engaged in right to health struggles, within a wider solidarity frame.
In exploring the persistent rift between public health and human rights, Elliot identified the critique of AIDS exceptionalism, that emerged especially in the last decade or so as another element to be taken into account. In his view, this strand propelled a schematic argument collapsing AIDS exceptionality and human rights and artificially opposes this pair to the dyad public health-social justice, viewed as more virtuous. He correctly observed that this binary framing is at odds with and voids the principle of indivisibility of rights legitimized at the Vienna International Conference on Human Rights (1993).
Tripty Tandon, from the Lawyers Collective and Shiba Phurailatpan , from ANP+, entered the discussion through a different angle elaborating on the limitations of legalistic rights based perspectives to HIV and AIDS. Both strongly underscored that the HIV response was a community response before it was framed in legal human rights terms. In Shiba’s words: “The indignant situation and tragedy of AIDS is what triggered the global activism on access to treatment.” Tripty’s intervention centered on her critique of the priority given to informed consent as a result from the adoption of a human rights frame. In her view, informed consent was put on a pedestal by activists, while for the affected communities themselves the priority was access to services and medicines. Shiba, in addition, briefly examined tensions within and across movements that arose in India as the prioritization of legal contestation of the criminalization of same-sex relations has been perceived by many as jeopardizing struggles around the rights to access services and medicines.
In commenting on the round table, Malu Marin (Seven Sisters in Bangkok) expanded further the analysis on the limits the human rights frame. She began by underlining that it can be very fragile in concrete policy terms. Revisiting the Filipino policy trajectory – which resonates with what is happening in many other contexts, including Brazil – she mentioned that if in 2000 a solid human rights frame was in place, in 2014 compulsory testing is underway and a provision to criminalize transmission is being debated. In her view, these regressions are occurring, among other reasons, because the sustainability of human rights policy frames requires strong investment in watchdogging. But today, as CSOs and communities are become increasingly engaged in “project implementation,” critical monitoring and political activism is loosing ground, when it is not jeopardized altogether.
In a subsequent panel the persistency or revival of mandatory testing for HIV was also identified as a major the obstacles to the realization of the right to health of sex workers. Mandatory testing programs were cited by Khartini Slamah (ISEAN-Hivos PROGRAM) and Shen Tingting (Asia Catalyst), who also emphasized how in most of countries of the world criminalization of sex work, police raids and systematic abuse, incarceration, as well as religious, public (but also feminist) morality is negatively impacting on the ability of persons engaged in commercial sex to have access to services, information, STI prevention and adequate health care. Trypti Tandon (Lawyers Collective) complemented the analyses once again noting that one sharp limitation in the application of the right to health frame in the case of sex workers is that policy responses remain confined to the prevention and treatment of HIV, when these persons have many other health needs and aspirations. A way out of this persistent confinement, in Tandon’s view, would be to begin reframing these needs and aspirations through the lenses of labor rights and occupational health.
Access to medicines: old barriers, new trends
HIV and AIDS also figured prominently in the debate on access to medicines. The panel composed by Giten Khwairakpam (TREAT Asia/amfAR), Sasha Stevenson (Section 27, South Africa), Heba Wanis (Egyptian Initiative for Personal Rights) and Primah Kwagala (Center for Health, Human Rights & Development, Uganda) examined the policy conditions prevailing in relation to the access to drugs as one key component of the rights to health in highly heterogeneous contexts, in terms of Intellectual Property Rights laws, funding patterns, structure and funding of the health system, but also the very prevalence of HIV.
In Asian countries, such as India and Thailand, as well as in South Africa, HIV prevalence is high and both patent laws and compliance with TRIPS rules constitute key barriers to access to treatment. In the case of Egypt, the most urgent problem concern the price of old and new drugs for Hepatitis C because the incidence is very high and local industries face technical and strategic obstacles. In Uganda, HIV prevalence is high, but TRIPS compliance does not apply yet. However, other structural barriers can be identified, such as procurement, distribution, stocking, donor dependency and the restrictive effects of the Anti-Homosexuality Law.
These distinctions however are not so clear-cut. For example, Sasha Stevenson mentioned that South Africa is experiencing problems of stocking. The barriers of distribution and the bad functioning of public health care systems were also considered to be major problems in Asian countries. Furthermore, in these countries the policy debates around hepatitis C drugs have also gained relevance because of co-infection, but also under the effect of the pressures made and strategies adopted by pharmaceutical companies, in particular by Gilead.
In a nutshell, three key messages emerged from the panel discussion. The first is that debates and mobilizing around intellectual property rights issues can not be confined anymore to ARVs, but increasingly require the engagement with other communities negatively affected by the existing patenting system. Although not everywhere, patent law reform is a priority. Most importantly the divide between voluntary licensing and the use of TRIPS flexibility in both policy formulation and positions taken by the affected communities is increasingly pronounced and cannot be evaded politically. In his final comments on the subject Anand Grover remarked that movements organized around the right to the access to medicines are challenged to move beyond being reactive to the pharmaceutical companies’ strategies and, most principally, to revive transnational connectivity and solidarity.
Although the Delhi meeting goal was broader than challenges regarding the HIV and AIDS human rights policies, the conversations it enhanced have illuminated the variety of ways in which HIV and AIDS have been, and continue to be, crucially important in shaping the conceptual and political landscape of health and human rights more broadly. GAPW has therefore a high expectation that the new Special Rapporteur will preserve the focus on HIV and AIDS, in its complexity, as one of the priorities of the mandate on the right to the enjoyment of the highest attainable standard of physical and mental health.
 Co-Chair, Sexuality Policy Watch (SPW), Brazilian Interdisciplinary AIDS Association (ABIA).
 The list of participants is as follows: The outgoing and the incoming Special Rapporteurs Anand Grover and Dainius Puras, Abou Mere (Indian Drug Users Forum) , Anya Sarang (Andrey Rylkov foundation for health and social justice, Russia) Bhavani Fonseka ( Alternatives, Sri Lanka), Daniel Tarantola ( Independent consultant) Dragana Korljan (OHCHR) Fiona Landers ( Harvard School of Public Health), Giten Khwairakpam (TREAT Asia/amfAR, Thailand), Heba Wanis (EIPR, Egypt), Jamshid Gaziyev (OHCHR), Jashodhara Dasgupta, (Sahyahog and IIMMNHR, India), Julie Hannah (Essex University), Kazuko Ito (Human Rights Now, Japan), Khartini Slamah (ISEAN, HIVOS Program), Meg Davis (Global Fund for HIV, Tuberculosis and Malaria); Maitreyi Misra (National Law University, India), Padma Desoltali Health and Allied Themes, India), Primah Kwagala (Center for Health, Human Rights & Development, Rajat Khosla) , Richard Elliot (Canadian HIV/AIDS Legal Network), Sarojini N. (SAMA, India), Sasha Stevenso (Section 27, South Africa), Sheng Tingting (Asia Catalyst), Shiba Phurailatpan (Asia Pacific Network of People Living with HIV), Sonia Corrêa (ABIA, Sexuality Policy Watch, Brazil), Tripti Tandon (Lawyers Collective, India), Vikas Ahuja (Delhi Network of Positive People, India), Walter Flores (Center for the Study of Equity and Governance in Health Systems, Guatemala), Kate Barth (Lawyers Collective, India) Gabriel Armas-Cardona (Lawyers Collective, India) , Amritananda Chakravorty (Lawyers Colective, India). Professor Paul Hunt, the first mandate holder, and Judith Mesquita (Essex University) participated remotely.
 I thank Mr. Anand Grover for the invitation of the Delhi meeting as an opportunity to meet Dr. Dainius Puras, but also as a learning experience in relation to the right to health panorama beyond the boundaries in which most of my work is concentrated.
 Having in mind the groundbreaking role played by Brazilian in the establishment of the Right to Health mandate it both puzzling and disappointing that no mention to HIV and AIDS is to be found in country report presented to the 2012 Human Rights Council Universal Periodical Review.
 PARKER, Richard, O acesso à testagem e ao tratamento na perspectiva dos direitos humanos, Boletim ABIA, No. 59, pp. 8-11, 2014. See also PARKER, Richard; AGGLETON, Peter, Test and treat from a human rights perspective, GAPW Bulletin, this issue.
 Although other health crises such as Ebola were to be included in the panel discussions, the speakers who had been invited to address these issues were not able to attend the meeting.
 The idea of AIDS exceptionalism of course has a longer history (see, in particular, BAYER, Ronald, “Public Health Policy and the AIDS Epidemic: An End to HIV Exceptionalism?” New England Journal of Medicine, 324(21):1500-1504, 1991). On its history and recent use, see SMITH, Julia H.; WHITESIDE, Alan, The History of AIDS Exceptionalism, Journal of the International AIDS Society, 13:1-8, 2010.