Why the human rights approach to HIV/AIDS makes all the difference
Marianne Haslegrave, Director, Commonwealth Medical Trust - COMMAT
Mandeep Dhaliwal, AIDS Alliance
Tony Barnett, LSE
The fifth meeting in the series was held on Monday 7 February 2005 at the Overseas Development Institute. The meeting was chaired by Tony Barnett. The two speakers were Marianne Haslegrave and Mandeep Dhaliwal.
2. The Chair, Tony Barnett, opened the session by clarifying this was the third decade since we had begun work on HIV/AIDS issues. Human rights were now recognised as central to this debate.
3. Marianne Haslegrave identified the millennium development goals (MDGs) as the important framework for activities and discussion on HIV/AIDS. Goals one and six were most relevant to this debate; the first goal of eradicating extreme poverty and hunger was very problematic within the context of rising HIV. This framework was particularly important in 2005 with UK Government taking presidency of the G8 and EU, alongside crucial MDG review processes. She urged a focus not only on Africa but other parts of the world too.
4. From the point of view of human rights, Haslegrave argued 'discrimination' was at the core of the HIV question. From the World Aids Day Report, 2004, (http://www.unaids.org/wad2004/report.html) she identified a number of groups that were vulnerable to discrimination and argued that the link between discrimination and poverty was strong. Vulnerable groups often suffered in multiple ways not related to their HIV status but which was then exacerbated by discrimination, for example in accessing quality preventive and treatment services. Human rights treaties had clear potential for the elimination of unfair discrimination. The Right to Life was a basis from which to push governments for increased condom availability.
5. Haslegrave argued that achieving equity within health institutions went beyond the realm of the health sector. Referring to a WHO paper written by Braveman and Gruskin (2003), (http://www.who.int/bulletin/volumes/81/7/en/Braveman0703.pdf) she advocated a long-term and holistic approach to HIV/AIDS that reflected the long-term and wide-impacting nature of the condition itself. This was achievable by institutionalising human rights perspectives to all health sector activities and sectors affecting health, strengthening public health functions, and implementing equitable health care financing.
6. Within the context of increased donor focus on direct budget support, Haslegrave warned against loosing the ability to track whether health care finances went where they were most needed.
7. She identified seven International Human Rights Instruments that could be used to protect individual health. Haslegrave argued that human rights guaranteed individual rights, established state obligations and mechanisms to monitor progress and enabled redress for violations. In addition to the governmental obligations: 'to respect, protect and fulfil' human rights, she highlighted CESCR General Comment 14's (http://www.ohchr.org/english/) distinction between obligations regarding health care and those regarding the underlying com determinants of health.
8. The first step to defining obligations within health care, Haslegrave argued, was to spell out exactly what should be provided for people with HIV or AIDS. This meant a focus on the quality of services, non-discrimination in access to HIV care and the underlying determinants of health. This led to accountability questions, particularly of governments, to make sure the rights of those affected were taken into account. Haslegrave noted this was a difficult area to work in but also very important. She concluded with a request to gather together examples of successful interventions that showed how a rights approach could be applied in practice.
9. Mandeep Dhaliwal emphasised that this was not an epidemic 'out there' but very much one that affected us all. These were 'testing times' for the principles and values of human rights.
10. Dhaliwal identified the key rights in the HIV/AIDS response. She noted change was not achieved quickly but required a reasonable amount of time and stressed the need for progressive realisation that recognised resource limitations and encouraged governments to develop concrete plans. In practice, as organisations and actors moved from principles to action, non-discriminatory practice based on ethical principles of equity were needed to shape appropriate advocacy and programmes.
11. Dhaliwal recognised clear complementarities between human rights and public health but also acknowledged tensions and conflicts. Human rights action focused on the protection and promotion of rights, freedoms and dignity of individuals while public health was defined as what society did collectively to ensure conditions in which people were healthy.
12. She identified two main approaches to public health for HIV/AIDS prevention and care. First, the Isolationist Approach drove people and issues underground and ultimately did not achieve public health objectives. Second, the Integrationist Approach emphasised choice and inclusiveness. She used the example of consent, HIV testing and 'routine testing' to draw out the differences: scaled-up ARV treatment could be used as justification for rights violations when counselling and information were denied, and the power relationships between health providers and patients ignored. Health experts had realised that public health strategies for HIV/AIDS prevention and care worked better when human rights and the dignity of persons concerned are respected.
13. Dhaliwal stressed there was a right to refuse treatment, for example when it might be forced or discontinued. 'Voluntariness' was key to both safeguarding the dignity and rights of the patient but also ensuring long-term benefits from treatment (see UNAIDS Global Reference Group on HIV/AIDS and Human Rights: http://www.unaids.org/en/in+focus/hiv_aids_human_rights/reference+group.asp#). In the case of Zambia people diagnosed in insensitive ways were less likely to adhere to their treatment.
14. Dhaliwal emphasised a disjuncture between confidentiality and disclosure. There was a duty to disclose HIV status that recognised the rights of the HIV negative people. Those bearing this duty needed to ensure that their disclosure would not endanger others. This required balancing benefits and risks. UNICEF, for example, viewed disclosure not as a one-off event but something that people continued to live with. This meant they needed to be empowered to view it as a positive act that allowed them to become part of the solution and not the problem.
15. Stigma and discrimination remained the biggest barriers to HIV prevention, care and treatment. Dhaliwal claimed discrimination deprived people of their rights and drove them away from seeking treatment. This profoundly affected those who were already marginalised by society: some were refused treatment, received discriminatory or sub-optimal treatment, were forced into testing, and experienced medical threats and negative attitudes from health workers.
16. Dhaliwal concluded by saying the global lack of access to ARV treatment was discriminatory and the greatest example of a human rights violation by the pharmaceutical industry, international patent regime, and super-powers. We needed to look much closer at TRIP agreements while also ensuring that as ARV treatments were scaled-up they did not entrench existing inequalities. She ended her presentation with a warning regarding the current debate on entry requirements for asylum in this country.
17. Discussion began by picking up this warning with a direct request for some advice to health care professionals responding to asylum seekers health needs? It was asserted that in the UK context there was the scarcity of resources had been exaggerated. Rather, funds needed to be better prioritized, and health care professionals should be encouraged to provide the best possible treatment to all people.
18. Discussion focused on the relationship between laws and cultural or social attitudes. It was positioned that many laws that were in place needed to change to reflect changing social values. This was the case in India where some penal laws had remained since colonial times. Conspiracies of silence existed on certain issues. In India, whole families were affected by the presence of men who had sex with men, leaving them ostracised. Where there was stigma the response must be holistic. In the UK, children from families affected by HIV and AIDS rejected the language of rights but wanted the content of rights (e.g. information) and assumed heavy duties.
19. It was asserted that organisations needed to reflect internally too. It was not good enough to carry our own prejudices to these debates. An approach that worked in one context might not transfer to other cultures. The role of research in designing interventions, policies, trajectories and action was acknowledged.
20. A heated discussion centred on whether the public health agenda had become skewed too far towards human rights, and the possibility was raised that misplaced concern with stigma and discrimination had driven HIV/AIDS further underground.
21. It was acknowledged that routine testing was used worldwide and that the gap between rhetoric and reality on this issue was widening - in some cases reflecting insurance issues.
22. Conflict within the rights agenda was acknowledged, for example the rights to health and culture could conflict with negative or harmful cultural practices (FGM, polygamy etc). Religious beliefs and organisations could be beneficial to care processes, but only when combined with scientific evidence and not driven by scare-mongering or moral posturing.
A comprehensive strategy for tackling the exacerbation of impoverishment by HIV/AIDS would include prevention of transmission, respect for human rights and progress on poverty reduction. This meeting identified best and worst practices in order to single out the impact of institutionalised human rights violations associated with HIV/AIDS and, conversely, beneficial effects of rights-based approaches to dealing with the HIV/AIDS crisis.