27 HIV/AIDS and Human Rights

Ms. Neenu Suresh

Table of Contents

1. Learning Outcomes

2. Introduction

3. What does HIV and AIDS stand for?

4. HIV/AIDS- A Global Epidemic

5. Centrality of Human Rights approach in combating HIV/AIDS

5.1.HIV/AIDS is not merely a medical problem

5.2.Challenges faced by persons infected/ affected by HIV/AIDS

5.2.1. Stigmatization

5.2.2.  Discrimination

5.2.3.  Violation of Informed Consent

5.2.4.  Breach of Confidentiality

5.2.5.  Impoverishment

5.2.6.  Barriers in facing lifesaving drugs

5.3.Persons Affected by HIV/AIDS

5.4.Defining effective legal response to HIV/AIDS

6. Summary

Learning Outcomes

By the end of this chapter, the reader shall be able to:

• Understand the challenges which people living with HIV and their close ones face on a day- to day basis.
• Comprehend why HIV and AIDS is a human rights issue.

Introduction

Stigma and discrimination attached with HIV infection is pervasive, thereby making the fight against the global epidemic of HIV/AIDS difficult. Each year, millions of people, mostly those belonging to low- and middle- income countries are being infected with HIV. Gross violations of human rights of persons infected with or affected by HIV, are reported from all over the world. A human rights approach to HIV/AIDS is imperative as it shifts the focus from individuals to addressing the social, political and economic factors causing the epidemic.

What does HIV and AIDS stand for?

AIDS was officially recognized for the first time in 1981, at the Centers for Disease Control and Prevention, USA. The virus causing AIDS- HIV was later identified in 1983-84, independently by a team of French scientists led by Dr. Luc Montagnier of Pasteur Institute and American scientists led by Dr. Robert C. Gallo of National Cancer Institute.

UNAIDS, the Joint United Nations Programme on HIV/AIDS has noted that the expression HIV/AIDS causes confusion and therefore the use of this expression should be avoided whenever possible. ‘HIV’ stands for human immunodeficiency virus, a virus affecting human immune system and making the individual more vulnerable to other infections. ‘AIDS’ or Acquired Immune Deficiency Syndrome, is however an advanced stage of HIV infection. A person infected with HIV may not have developed any of the symptoms of AIDS and therefore the use of HIV/AIDS is confusing as prevention and treatment of both entails different measures to be taken. At present, there is no cure available for AIDS; however, a person infected by HIV can live a productive and healthy life with antiretroviral therapy.

There are many myths surrounding the ways in which HIV gets spread. HIV can be transmitted from an infected person to another person only through direct contact with certain body fluids such as blood, semen, pre- seminal fluid, rectal fluids, vaginal fluids and breast milk. Most common ways in which HIV is spread are as follows-

• Sexual contact with an HIV infected person.
• Direct blood contact, especially through sharing needles, syringes, rinse water or other ‘works’ used to prepare injection drugs.
• Infections through blood transfusions, blood products, organ/tissue transplants.
• Mother to baby transmission at the time of pregnancy, birth or through breast feeding.

4. HIV/AIDS- A Global Epidemic

According to the World Health Organization, HIV continues to be a major public health issue. So far, it has claimed 34 million lives globally and in 2014 alone, around 1.2 million people died due to HIV- related causes in the world. At the end of 2014, there were approximately 36.9 million people living with HIV globally, including 25.9 million people from Sub- Saharan Africa alone. While 2.0 million people became newly infected with HIV in 2014, 70% of these cases came from Sub-Saharan Africa. The ‘Gap Report’ by UNAIDS released in 2014, shows that 19 million of the 35 million people living with HIV do not know that they have the virus.

The 2011 Political Declaration on HIV and AIDS recognizes that ‘HIV and AIDS constitute a global emergency’ and ‘over the three decades since AIDS was first reported, the HIV epidemic remains an unprecedented human catastrophe inflicting immense suffering on countries, communities and families throughout the world’.

Figure 2: Number of people living with HIV in the world by year

5. Centrality of Human Rights Approach in combating HIV/AIDS

5. 1. HIV/AIDS is not merely a medical problem

It has now been realized that HIV/AIDS is not merely a medical problem. Unlike other diseases, which in the first place, draw sympathy and compassion, HIV infection leads to stigmatization of both the individuals infected with and affected by the virus. Jonathan Mann, a pioneer in the global fight against HIV/AIDS and first head of the World Health Organization’s Global Programme on AIDS, advocated for a ‘health and human rights’ framework to combat the virus. He identified three factors as relevant to the prevention of epidemic: (i) political and governmental (ii) sociocultural and (iii) economic. In his own words, “[p]olitical factors include the inattention or lack of concern about HIV/AIDS, as well as governmental interference with the free flow of complete information about HIV/AIDS. Sociocultural factors involve social norms regarding gender roles and taboos about sexuality. Economic issues include poverty, income disparity and the lack of resources for prevention programs. . . It has become clear that a deeper understanding of the societal nature of the pandemic and the societal preconditions for HIV vulnerability is now required”. The international instruments reiterate, from decades of experience, that a human rights approach to addressing the HIV epidemic is effective in preventing the transmission of the HIV and protecting the interest of those infected/ affected by it. As precisely pointed out by Lawyers Collective, one of the leading public interest service providers in India, a rights based approach considers people in their contexts. It is not just the individual’s risks to HIV infection which informs the right based approach, but also their ‘vulnerability into marginality and the impact of marginality on their vulnerabilities’.

5.2.  Challenges faced by persons infected/ affected by HIV/AIDS

People living with HIV face tremendous challenges on a daily basis- many of them which are rooted in the social and economic realities they live in. In this section, we shall discuss some of the issues which people living with HIV and affected by it face, which again necessitates a human rights approach to the issue.

5.2.1.  Stigmatization

People living with HIV suffer not just from the burden of the disease but also from the stigmatization, discrimination and violence associated with it. The perception that HIV is related to immoral or deviant behavior on the part of infected persons obstructs their realization of human rights. Individuals are singled out and blamed to be responsible for the epidemic. Their dependents are severely ostracized by the society and their human rights rampantly violated. These also deter many from availing treatment, or even disclosing their HIV status with their close ones, thereby exposing others to contracting the virus too. Thus, protection of human rights is imperative for ensuring comprehensive treatment and care of people living with HIV/AIDS as well as prevention of HIV/AIDS.

5.2.2.  Discrimination

Discrimination is one of the most common human rights abuses facing the people living with HIV and affected by it. Discrimination of persons infected by or presumed to be infected by HIV can take different forms. Often denied employment, housing, travel, education, healthcare and privacy rights, they find it extremely difficult to sustain themselves and their families. Incidence of HIV/AIDS is alarmingly high among certain socially, economically and politically marginalized and discriminated sections of society. While discrimination fuels HIV, HIV status results in further discrimination of individuals. Some of the vulnerable groups such as women, migrants, ethnic minorities, poor and young people are often discriminated against, thus making them more vulnerable to the epidemic.

5.2.3.  Violation of Informed Consent

Early response to HIV in most of the States was marked by mandatory screening of individuals and isolationist approaches, which is today widely recognized as violative of right to life and liberty. People were forced to undergo testing without their consent and the test results were linked to the identity of the person. It is seen that mandatory screening policies are counterproductive as persons at the risk of infection often avoid getting in touch with health authorities to evade identification and compulsory testing, thereby putting at risk both their lives and those of their close ones. While it has been rejected by many countries, in the recent past, mandatory testing has obtained a lot of political support in countries like Saudi Arabia, UAE, China, Ethiopia, Senegal etc. Promotion of voluntary testing with pre-test and post- test counseling is important as it ensures informed consent and privacy.

5.2.4.  Breach of Confidentiality

Disclosing one’s HIV status often results in stigma and discrimination, in turn affecting HIV prevention, treatment and care. There have been numerous instances reported, of denial of work and healthcare, denial of education for children, and even violent deaths of HIV infected persons as a result of disclosure of their HIV- positive status. The case of two children being expelled from their school in Kerala, when the authorities got to know about their HIV-positive status, is a telling example of the intolerance of the society. It has now been realized that protection of confidentiality is not question of ‘private good’ i.e. maintaining confidentiality versus ‘public good’- disclosure of information, as the ‘private good’ itself is in the public interest, serving an effective response to HIV and ensuring human rights protection. Many countries today have legislations protecting confidentiality of people living with HIV. However, protection of confidentiality is not absolute and in very specific exceptional situations such as partner notification, it is allowed in many countries.

5.2.5.  Impoverishment

One of the key conditions contributing towards increased vulnerability and HIV infection is poverty. Poverty impedes access to information and other resources necessary for prevention, treatment and care and diminishes their ability to deal with the effects of the HIV infection. The Commission on AIDS in Asia has found that the impact of AIDS is largely felt at the household level. Burden of illness translates into loss of income and livelihood assets for family members. Discrimination exacerbates the difficulties in finding successful employment. In the absence of formal social protection systems, the pressure to fend for themselves, exposes them and their dependents to more human rights abuses.

5.2.6.  Barriers in accessing life saving drugs

HIV Prevention Trial Networks Study, HPTN052 has found a 93% reduction in HIV transmission with early Antiretroviral Therapy. However, access to life saving drugs is one of the primary challenges facing the people living with HIV. In 2014, only 14.9 million people living with HIV were receiving antiretroviral therapy (ART) globally. This accounts to merely 40 % of the total people living with HIV today.

5.3. Persons affected by HIV/AIDS

A noted earlier, the stigma and discrimination is not limited to people living with HIV, but also their dependents. There are numerous cases of children foregoing their education, wives leaving jobs and living a life of penury, as a result of social ostracism. According to a United Nations Development Programme Study in India, around 40 per cent of the widows leave their in-laws’ homes after the death of their husbands, and an estimated 80 per cent of them are deprived of property. Often these experiences fail to come into broad light, as families silently accept these as their fate, fearing more isolation. Apart from this, the long duration of illness caused by HIV can result in loss of income and this coupled with the cost of caring a dying family member, can lead to impoverishment.

Without human rights protection, vulnerability of the marginalized sections contracting HIV increases. For instance, widespread discrimination and violence against women, including violence within marriage makes it difficult for them to prevent the disease. Globally women and young girls are the most affected by HIV epidemic. Physiological factors, gender inequalities, unequal social, economic and legal status, insufficient access to medical and health care services and information, and discrimination and violence including sexual violence within the marriage, mute their voices making them vulnerable to HIV. Lack of access to information and services further exacerbates their vulnerability, making them the group with the highest rate of infections. Other marginalized groups like men who have sex with men (MSM), transgender persons, sex workers, migrants, persons who use drugs and prisoners are mostly criminalized populations. They are legally and socially marginalized and the discrimination and violence they face, often at the hands of the police officers charged with enforcing laws, fuel their HIV risk. Punitive approach to homosexuality, sex work and drug use easily spreads stigma and discrimination pushing them further away from information, services and treatment.

5.4.       Defining effective legal response to HIV/AIDS

While laws and legal systems have immense potential in bringing about remarkable changes in the lives of people living with HIV and those affected by it, unfortunately, most of the countries resort to punitive and discriminatory laws, resulting in further marginalization of the vulnerable sections. As noted by the Global Commission on HIV and Law, ‘these legal practices create and punish vulnerability’. They perpetuate discrimination and isolate those individuals and groups most vulnerable to HIV. Lack of a human rights approach hinders effective national response to fighting HIV. The deep seated notions, fears and misconceptions surrounding HIV/AIDS often make the political leaders hesitate from engaging effectively in addressing the epidemic. A human rights approach will provide the governments a framework on the basis of which they can formulate laws and policies to respond appropriately to the challenges posed by the epidemic. This also provides a basis for non-governmental organizations and other advocacy groups to assess the government’s measures, policies and finally its commitment in fighting the epidemic. Most importantly, it ensures participation of people living with HIV in the formulation and implementation of policies and programmes to fight the epidemic. The Paris AIDS Summit of 1994 recognizes that people with HIV/AIDS are part of the solution, not the problem and declares the governments to follow the ‘GIPA Principle’ i.e. greater involvement of people with HIV/AIDS.

6. Summary

We, as a society, have not yet become comfortable with discussing sex, sexuality or ‘non conformist’ behaviours. However, HIV epidemic has made the society ponder and re- examine our beliefs on many these issues, which still remain closeted. While medical interventions are indispensible for combating HIV and the donors are investing millions for this, without the recognition of a human rights approach, HIV prevention and treatment will undoubtedly get undermined.

Reference

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