31 Towards a more effective response to HIV/AIDS

Ms. Neenu Suresh

Table of Contents

1. Learning Outcomes

2. Introduction

3. Significance of Human Rights Approach in combating HIV/AIDS 3.1. Ensuring Accountability

3.2. Promoting Advocacy

3.3. Defining the approaches to Programming

4. The Way Forward

4.1. Protecting Human Rights

4.2. Enhanced Political Engagement

4.3. Reaffirming the importance of global coordination

4.4. Ensuring Community Engagement

4.5. Prioritizing Interventions

4.6. Addressing Structural Inequalities

4.7. Bringing in Law Reforms

4.8. Ensuring Accessibility and Affordability of Life Saving Drugs

5. Summary

1. Learning Outcomes

By the end of this chapter, you shall be able to

• Understand the significance of human rights approach in combating HIV/AIDS.
• Comprehend measures required to be taken for marking an effective response to HIV.

2. Introduction

The Report of the Commission on AIDS in Asia, ‘Redefining AIDS in Asia- Crafting an Effective Response’ observes that HIV responses in Asia can easily fit a predictable pattern. At the initial phase, the denial phase- responses are based on fear or denial, wherein countries try to arrest the epidemic using punitive laws or measures. Then comes the stage of ‘ad- hoc’ response where the countries introduce more interventions, which are often not based on any solid evidence. This, it names as the informed phase. Later, the response improves and is based on scientific evidence, although the problems of coverage prioritization remain. Finally, a mature response is achieved. Governments deploy necessary financial, institutional and human response to achieve a sustainable and comprehensive HIV response. This chapter enlists certain prerequisites for marking an effective response to HIV/AIDS.

In the figure above, baseline scenario indicates current HIV programming and effectiveness continue and scaled up intervention scenario denotes 80 per cent consistent condom use is achieved among sex workers and clients, similarly high levels of risk reduction among men who have sex with men and injecting drug users, and 80 per cent of people in need of antiretroviral treatment receive it.

3. Significance of Human Rights Approach in combating HIV/AIDS

A human rights approach to fighting HIV/AIDS is important because of its following key functionalities:

• Ensuring accountability
• Promoting advocacy
• Defining the approaches to Programming

The full realization of human rights and fundamental freedoms for all is an essential element in a global response to the hiv/aids pandemic, including in the areas of prevention, care, support and treatment, and it reduces vulnerability to hiv/aids and prevents stigma and related discrimination against people living with or at risk of hiv/aids.

– 2001 Declaration of Commitment on HIV/AIDS

3.1. Ensuring Accountability  One of the most significant achievements of the human rights obligations is its ability to ensure accountability. At the least, governments cannot afford to ignore them. Countries signing the international human rights obligations come under pressure from the international community and human rights advocacy groups within the country to enforce the commitments therein. The 2001 Declaration of Commitment on AIDS, Political Declarations on HIV/AIDS of 2006 and 2011 and the International Guidelines on HIV/AIDS and Human Rights have been crucial as they have provided an impetus to translate most of the human rights standards into application at national level. However, there is a pressing issue.

3.2. Promoting Advocacy

One of the most important advantages of having a human rights approach is that it gives an impetus to the advocacy groups to mobilize community action to change the existing discriminatory laws, practices and systems, and to hold governments accountable to their human rights obligations. The concerted efforts of human rights advocacy groups have contributed significantly to the betterment of conditions of people living with HIV and others affected by the epidemic. The numerous cases filed in the courts across India, by groups like Lawyers Collective, Human Rights Law Network etc., to protect the human rights of HIV infected/ affected persons and the handing over of responsibility of drafting legislation on HIV to Lawyers Collective by the government, all exemplifies the significance of advocacy function of human rights. The efforts by groups like Doctors Without Borders have been significant in exposing the human right abuses of multinational pharmaceutical giants and safeguarding the right to healthcare of people infected by HIV.

3.3.  Defining the approaches to Programming

Experiences show that HIV/AIDS policies, programmes and other interventions, when based on a rights based approach, are effective, sustainable and more inclusive in nature. This is because of the fact that rights based approaches are guided by the needs, experiences and rights of the community, while also empowering the community to widen their participation and bolster their relationship with law, policymakers and partner organizations. According to UNAIDS, which has long term commitment in developing human rights based approaches to fight HIV, “a rights-based approach can help mitigate the impact of HIV/AIDS as it allows for the creation of a supportive policy, legal, social and cultural environment in which people infected or affected by HIV/AIDS are able to participate in, contribute to and enjoy economic, social, cultural and political development despite their HIV status”.

The Way Forward

Many experts argue that the AIDS epidemic can be ended by 2030. In 2013, UNAIDS convened a group of thought leaders and scientists to define the meaning of ending the AIDS epidemic. According to them, “Ending the AIDS epidemic means that the spread of HIV has been controlled or contained and that the impact of the virus in societies and in people’s lives has been marginalized and lessened thanks to significant declines in ill health, stigma, deaths and the number of orphans. It means increased life expectancy, unconditional acceptance of people’s diversity and rights and increased productivity and reduced costs as the impact diminishes.

Experience shows that neither medical interventions alone nor using legal responses only, can contribute to a sustained and effective response to challenges raised by HIV/AIDS. It inevitably calls for a multi- sectoral approach. Some of the key intervention strategies for marking an effective response to HIV/AIDS are discussed below. In fact, UNAIDS assert that it is time for us to move from a response mode to mission mode.

4.1. Protecting Human Rights

Protecting human rights needs to be the focus of any HIV interventions to be successful. The advantages of such an approach have been discussed in detail in the above section. Only by empowering populations and wiping away the ingrained structural inequalities, can this world move end HIV. Medical interventions can provide sustainable results only when the human rights of the populations most vulnerable to HIV are protected.

4.2. Enhanced Political Engagement

Studies have shown that a strong political commitment and leadership is imperative in effective planning and implementation of HIV responses. Countries with far sighted politicians showing a commitment towards fighting the global epidemic have made great strides towards successful prevention and control of HIV. Experiences show that political commitment has instilled a sense of urgency, created an enabling space for public discussions and involvement of community, effectively mobilized public opinion and also lead to earmarking of adequate resources for HIV programmes. Commission on AIDS in Asia observes that on a general account, political leadership and engagement arises from three factors: a pragmatic and mature sensibility among leaders, as witnessed in the case of Thailand; recognition of a sense of urgency of the situation, like in the case of India and China; and pressure from the civil society, like in Philippines.

4.3.  Reaffirming the importance of global coordination

International organizations like United Nations have played a prominent role in initiating and sustaining effective national responses to HIV. HIV programmes in the developing world depend majorly on the funds coming from international funding agencies and other countries. A concerted global action and coordination can contribute towards a sustained and intensified HIV/AIDS response.

In 2004, donors, national governments, UN agencies and other key international organizations entered into a landmark agreement for promoting global coordination. They committed to a ‘Three Ones’ principle, which is as follows:

• One agreed HIV/AIDS Action Framework that provides the basis for coordinating the work for all partners.
• One National AIDS Coordinating Authority, with a broad based multi- sector mandate.
• One agreed country level Monitoring and Evaluation System.

These guiding principles aim to ensure national ownership, effective coordination in a transparent manner and efficient use of resources. Since its formulation, it has been facilitating effective coordination and harmonization of HIV responses.

“The more we lack the courage and the will to act, the more we condemn to death our brothers and sisters, our children and our grandchildren. When the history of our times is written, will we be remembered as the generation that turned our backs in a moment of a global crisis or will it be recorded that we did the right thing?”

-Nelson Mandela

4.4.  Ensuring Community Engagement

It has now been recognized that effective response to HIV requires treating the people living with HIV as participants in their own destiny and not as victims or passive recipients of assistance. In the health promotion principles of the 1996 Ottawa Charter on Health Promotion and the subsequent Jakarta Declaration, it was recognized that rather than regarding communities as passive beneficiaries of assistance, ‘people are able to think and act constructively in identifying and solving their own problems’.

Communities comprise the glue that holds people together. The key to achieving health in the community is based not only on getting services to the community, but also engaging and empowering them to be the catalysts of change and bearers of success.

-The Global Health Council

Experience from many countries, including India demonstrates that organized response to AIDS are often initiated and driven by the people living with HIV, those affected by it and activists. Community engagement is therefore crucial for an effective response to HIV, including formulation of policies, its effective implementation, and service delivery. Even the simple act of talking about the issues which have been closeted for long empower people living with and affected by HIV. However the conformist society makes this a daunting task. The Commission on AIDS in Asia has observed that community participation can contribute towards effective response in the following ways:

Figure 5: Advantages of having community participation in combating HIV/AIDS

To cite an example, Community Models of Care have been used by many resource poor countries to ensure access to antiretroviral drugs. These models demonstrate that involving communities in their health system’s decisions help address the barriers in accessing treatment to a great extent. Piloted and found to be a success, in many countries, they aim at bringing treatment close to people’s homes. Through some of these models like appointment spacing and fast track drug refills, adherence clubs, community ARV distribution points or PODIs, delivery of drugs is arranged at the community level with support peer groups. The international medical humanitarian organization Doctors Without Borders/Médecins sans Frontières (MSF) advocating for community models of care demonstrate that besides saving patients money and time, these increase peer support, fight stigmatization and contribute towards empowering the people living with HIV.

4.5. Prioritizing Interventions

The Commission on AIDS in Asia’s analysis of the relative costs of the interventions against the numbers of HIV infections prevented, number of AIDS deaths averted and scale of income losses avoided, indicates that the costlier interventions would prevent only about one per cent of new HIV infections. Such inventions including ensuring blood safety and safe injection would absorb more than 25 per cent of the estimated total HIV response budget. They classified HIV interventions into four categories, depending on their costs and effectiveness:

-High- cost/ High- impact- antiretroviral treatment, programmes to prevent mother to child transmission

-Low- cost/ High- impact- interventions focused on sex workers and clients, harm reduction programmes, prevention programmes for men who have sex with men

-Low- cost/ Low- impact- mass media, AIDS awareness programmes, securing property and inheritance rights for women, girls’ education

-High- cost/ Low- impact- strengthening of health systems, universal precaution measures.

Their analysis demonstrate that while universal precautions and interventions targeting sex workers and their clients tend to be similar in cost, there is considerable difference with respect to the number of new HIV infections that can be prevented. In comparison to the universal precautions, targeted interventions focused on workers and clients can prevent 7,000 times more new HIV infections with the same amount of money spent. The antiretroviral treatment, on the other hand, falls in the High- Cost- High Impact category. Access to a continuum of antiretroviral therapy, though costly, can save several years of life. On the basis of its analysis, the Commission proposes that interventions of high and known effectiveness, irrespective of their cost, should be prioritized and funded out of the allocated budgets. However, this does not mean that other interventions should be left out. These may be of low impact, as the Commission’s own classification shows. The case of securing women’s property and inheritance rights were termed low impact intervention due to long term effects or effects difficult to quantify.

4.6.  Addressing Structural Inequalities

While the above analysis puts some of the interventions focused at dealing with the structural inequalities in the low- impact category, experience shows that for a sustained response, the complexities underlying societal factors and HIV, needs to be paid attention. It is especially important as any intervention operates in the social, economic and cultural spaces, which in turn determines its effectiveness. The social drivers of the epidemic, including socio- economic and gender inequality, discriminatory legal and political systems etc. calls for a multi- sectoral response to HIV. Along with venturing into efforts to tackle the ‘social drivers’ of the epidemic, as a first step, an enabling environment for tackling HIV can be created. For instance, interventions such as poverty reduction may take years to show tangible results. However, increasing poverty affects the accessibility to healthcare services. As an immediate step to tackle with the epidemic, Governments can create an enabling environment, by providing free and subsidized healthcare services.

4.7. Bringing in Law Reforms

As a priority, the governments should undertake an extensive review of its laws and legal process, to ensure that they are in consonance with the human rights standards. Human rights commitments do not end with signing of international instruments. Governments need to repeal the punitive and discriminatory laws and enact laws which enable an effective repose to HIV. Criminalizing of HIV transmission and same- sex sexual acts, mandatory disclosure of HIV information, mandatory testing of individuals for HIV etc. need to be stopped. It is also necessary to bring in reforms in the religious laws and engage in the reviewing of customary practices which have been undermining the rights of vulnerable sections and impairing their access to HIV prevention, care and treatment services. For any of these law reforms to be effective, it is important to take the community into confidence. Extensive awareness generation measures can assure the smooth passing and implementation of the law reforms.

4.8. Ensuring Accessibility and Affordability of Life Saving Drugs

The Global Commission on HIV and the Law, in its abovementioned study on legal framework related to HIV in various countries have found that some countries, despite the international pressure to prioritize trade over public health, have used law to ensure access to affordable medicines for its HIV infected populations. There has been a dramatic decrease in the price of first generation Antiretroviral (ARV) drugs, in the recent years, owing to the competition given by generic drugs. However the second and third generation ARVs and the medications for co- infections like Hepatitis C continues to remain expensive.

Ensuring Access to life saving drugs: the South African Experience

South Africa has embarked on a reform of its patent laws and is currently facing stiff opposition from the pharmaceutical companies to backtrack from the process. It was found that most of the patent laws in the country were outdated; they were granted without substantive review and the country was unable to deal with the evergreening resorted to, by the companies. For instance, in 2008 alone, around 2,442 patents were granted to the pharmaceutical companies, against the 278 granted in Brazil between 2003 and 2008. The South African Department of Trade and Industry, in 2013, released the Draft National Policy on Intellectual Property (DNPIP), which calls for establishment of a patent examination system, stricter criteria for granting a patent and setting up patent opposition procedures. The multinational pharmaceutical industry is vociferously opposing the reforms and the Pharmagate scandal of 2014 revealed that they were delaying and undermining the reform process by financing a covert US$ 600,000 campaign.

Recently,  the    American    Chamber   of Commerce in South Africa, in early August 2015, requested the United State’s Trade Representative (USTR) that South Africa’s eligibility to benefit from United State’s African Growth and Opportunity Act (AGOA) 16 should be contingent on its abandoning certain IP reforms.

Albeit some countries have prioritized public health needs of its population. Timely pre-grant oppositions filed by India’s civil society organizations to challenge the secondary patents have given the country’s generic medicine producers a boost to advance the production of second-line medicines. Countries like Thailand, Ecuador and Indonesia have issued compulsory licenses to enable the production or importation of these drugs. The patent regime, undoubtedly poses major hindrance to the access to medicines. TRIPS and TRIPS-plus measures, outdated patent laws as in the case of South Africa and bilateral pressure from developed countries like United States and European Union and pharmaceutical countries are escalating the number of patents and providing stiff resistance to the generic industry. Countries should put into maximum use all the legal safeguards available at their disposal.. While safeguarding of the inventor’s interests are required, more important is the enforcement of an effective legal Intellectual Property regime, consistent with international human rights commitments and public health needs.

5. Summary

While there has been considerable efforts made, both internationally and nationally, to combat HIV/AIDS, a lot remains to be done. Though States are required to submit reports on their compliance with existing international instruments, the enforcement mechanism still remains weak. Further, the emphasis being mostly on protection of civil and political rights, socio-economic and developmental rights gets overshadowed. Efforts need to be scaled up to ensure that each and every person living with HIV has access to treatment, care and services. For ensuring an effective response in combating the epidemic, the socio- economic disadvantages facing the marginalized sections needs to be primarily dealt with. A structural transformation with changes in the power equations reining the society is inevitable in finding sustained solutions to the concerns raised by HIV epidemic.

Reference

• Report of the Commission on AIDS in Asia, Redefining AIDS in Asia: Crafting an Effective Response, Oxford University Press, 2008.
• Ryuichi Komatsu, Ross McLeod, Swarup Sarkar, et al, Asia can afford universal access for AIDS prevention and treatment, AIDS: September 2010, Volume 3, Suppl 3.
• Venkatesan Chakrapani, Peter A. Newman, Murali Shunmugam, Abraham K. Kurian, and Robert Dubrow, AIDS Patient Care and STDs, November 20, 2009, Volume: 23, Issue 11, Available at: https://doi.org/10.1089/apc.2009.0035
• Piot P., Barre-Sinoussi F., Karim Q.A., Karim S.S.A., Beyrer C., Appeal to global donors to save the Treatment Action Campaign, The Lancet, December, 2014, Volume 384, No. 9959, e62.