“AIDS is a death sentence that is to be implemented on an unknown date”
INTRODUCTION
The worldwide epidemic of Human Immunodeficiency Virus (HIV) infection and Acquired Immuno Deficiency Syndrome (AIDS) is perhaps the first pandemic to occur in the modern era of human rights. In contrast to many other health issues of the past, HIV/AIDS prevention and care have raised many human rights concerns and have posed numerous challenges before the contemporary society. As a matter of fact, interaction between AIDS and human rights can be considered in three ways: First, HIV/AIDS policies, programmes and practices can violate or interfere with human rights, Second, threats to human rights reduce the effectiveness of HIV/AIDS prevention and care programmes. Third, promoting human rights reduces vulnerability to HIV infection. Thus, health and human rights perspectives and actions not only complement but mutually reinforce each other in the context of HIV/AIDS.
Marginalized groups in our society have little or no access to basic human rights such as food, medical services and information. Many of these groups are ostracized by society at large, and their lifestyles criminalized, making it practically impossible for them to participate in mainstream processes whereby they could demand their rights. Coupled with this dismal situation, there is minimal awareness about HIV and there are no real options for safer lifestyles. The stark reality of the HIV/AIDS epidemic is thus that people are becoming HIV positive because they have no access to basic fundamental human rights. For the same reasons, the impact of infection is a lot graver for those with no access to rights. That is why there is grave and urgent need to recognize this link between marginalization, human rights and vulnerability. It is also a time to recognize that the HIV/AIDS epidemic itself has given rise to a range of human rights violations. The refusal of treatment, denial of access to essential drugs including antiretroviral therapy, discrimination in the health care and employment sectors, women being deprived of their rights and thrown out of their homes etc. etc. are just some of the examples of these violations. Apart form having a serious impact on the lives of people living with HIV/AIDS, these violations are pushing the epidemic underground. Therefore, unless these human rights violations are properly addressed, there cannot be the creation of an enabling environment, where people come forward to access health and other services, or even get tested for HIV/AIDS.2
There is, therefore, a need for people and organizations involved with public wealth and with human rights to work in conjunction with each other. Both fields have independent yet inter-dependent objectives. Their respective work can contribute to a more effective effort to prevent HIV spread and improve care of HIV-infected and people with AIDS. They can increase respect for human rights and dignity and stop abuses committed under the pretext of controlling HIV/AIDS.3 There is, thus, a need to foster a spirit of understanding and compassion for HIV/AIDS infected people though information, education and social support programmes.4
MAJOR ISSUES RELATING TO HIV/AIDS
This is now a universally acknowledged fact that AIDS is a global challenge of unprecedented scope. In the filed of human rights, it has threatened to undermine universal respect of human rights. This was perhaps the reason that the Secretary General of the United Nations, in his speech at the General Assembly was back on 20, October, 1987 had said that our fight against AIDS “is also a fight against fear, against prejudice and against irrational action born of ignorance. For these are the causes of some of the most critical violations of human rights.”5
The HIV/AIDS pandemic is also a major challenge to the public health of communities and nations around the world. The goals of public health are to prevent HIV infection (primary invention) and to reduce the personal and societal impact of HIV infection and AIDS (secondary and tertiary prevention). It may be appropriate to mention here that the World Health Organisation has taken a series of strong and proactive stands to help protect the rights of, and prevent discrimination against, persons affected with HIV. This position was reinforced by the 41st World Health Assembly, which adopted a resolution on 13 May 1988 entitled: “AIDS: Avoidance of Discrimination in Relation to HIV-infected People and People with AIDS”. The aforesaid resolution urged the Nation Member States “to protect the human rights and dignity of HIV-infected people and people with discriminatory action against and stigmatization of them in the provision of services, employment and travel.”6 In addition, the Member States were urged “to ensure the confidentiality of HIV testing and to promote the availability of confidential counselling and other support services to HIV-infected people and people with AIDS.”7
In the following paragraphs, I have attempted to highlight and discuss some of the prominent issues that HIV/AIDS pandemic has brought to the forefront. An insight into these issues enable us to understand the ambit, amplitude ramifications of the pandemic that is confronting us for the last two decades or so. These issues are:
Consent and Testing
Any discussion in support of human rights is based on the fundamental notion that every individual has certain inalienable rights, which, if protected, permit that individual and society at large to flourish. One such right is that of self-autonomy where every adult of sound mind has right to determine what can be done to his/her body. This deals with the very essence of having the right to lead a life and take decisions for oneself in one’s best interests without any coercion or force. In the context of HIV/AIDS, this issue manifests itself in the form of an informed consent, in two critical scenarios: First is a situation where a person is tested for his/her positive status. It is a widely held belief that before a health care worker/testing facility tests a person for HIV, the person must be fully informed of various issues related to the test and result prior to taking his/her consent for testing.
The issue of consent arises in the HIV/AIDS scenario is for purposes of research. There are mainly two types of research- biomedical and behavioral. In both, consent plays a vital role. For a researcher to seek a person’s participation in research, it is important that the prospective participant be fully informed of various factors such as the risks and benefits that the researcher may expose the participant to, the absence of any monetary or material inducement, the purposes of the research, the organizations funding and conducting the research, the duties and responsibilities of the researcher, the manner of keeping records and the guarantee of confidentiality.
Confidentiality
The concept of confidentiality is rooted in the fundamental human right of privacy- every person has the right to a sphere of activity and personal information that is exclusive to him/herself and that he/she has the right to disclose as he/she pleases. This is the right that has been guaranteed by both international human rights documents and under the Indian Constitution. Confidentiality is an extension of the right of privacy and plays an important role in the HIV/AIDS scenario where stigma and discrimination are rampant.
Discrimination in Health Care
Discrimination lies at the root of all legal and human rights issues in the HIV/AIDS context. It is because of the fear, ignorance and stigma associated with HIV/AIDS that PLWHA are treated prejudicially and unequally. The reality is, however, quite different and discrimination is rampant vis-Ã -vis PLWHA in the healthcare setting. This is further accentuated fro certain marginalized populations. For instance, women, commercial sex workers, drug users and prisoners find themselves discriminated in health care irrespective of their HIV status. Their positive status, however, further marginalizes them and decreases access to health servies even more. Those who do not fall within these populations but are HIV positive also suffer immense discrimination in healthcare. Not only would increased access to healthcare benefit PLWHA, it would have a positive public health impact on society at large in preventing the spread of the pandemic.8
CONCLUSION AND SUGGESTIONS
By the end of this decade, the number of people infected with HIV will increase dramatically, along with an even more rapid rise in the number of people with AIDS. The expanding HIV/AIDS epidemic is certainly going to be accompanied by intense social, economic and political distress. Threats to and interference with human rights and dignity of HIV/AIDS infected and affected people, as well as already marginalized groups, are expected to increase substantially. A united public health and human rights effort is, therefore, urgently needed to meet these threats- both to health and human rights all over the world.9
Back home, India does not yet have a complete picture as to the magnitude of the HIV/AIDS pandemic especially considering the lack of surveillance data in vast regions of the country. However, in areas where surveillance has taken place, it is seen that the pandemic follows its unbridled path and is beginning to surface in all spheres of life including homes, the workplace and the health care sector. It is now quite clear that HIV/AIDS in India, too, is just a medical issue but also an issue that cuts across all economic, social and cultural realms. It is also an issue that does not affect particular groups but has an impact on all. It is important, therefore, that the tendency to blame a certain section of society needs to be combated if prevention and control efforts are to be effective.10
As the pandemic has grown, experiences reflect a consistent pattern through which discrimination, marginalization, stigmatization and more generally, a lack of respect for the human rights and dignity of individuals and groups heighten their vulnerability to HIV/AIDS. Very often such discrimination stems from ignorance about the route of HIV/AIDS transmission and unwarranted fears of infection. Health programmes may also discriminate by failing to provide services tailored to the needs of the marginalized groups such as commercial sex workers, adolescent women, or racial and religious minorities.11 The ignorance and fear has led to harsh laws and measures that violate the rights and freedoms of those trying to avoid HIV infection and of those already living with HIV/AIDS.12
No one has experienced fear and courage, ignorance and insight, prejudice and acceptance, despair and home more fully or intensely than people living with HIV/AIDS. Yet this experience is not confined to just PLWHA but also those who are dependent on, related to or associated with a PLWHA. These persons include, spouse, partners, children, widowers, orphans, parents, other family members and friends of PLWHA. Clearly, this is a vast and significant segment of society. While developing and response and implementing and strategy vis-Ã -vis HIV/AIDS, the needs and experiences of this entire groups of people affected must also be considered.13
Thus I would end my essay with a sermon that “To care for the AIDS affected people is our duty and to prevent AIDS is our responsibility”. Let us work together in our endeavour towards an AIDS free society, a distant dream but a doable reality.
SELECT REFERNECES AND SOURCE MATERIALS
* AIDS, Health and Human Rights — An Explanatory Manual (1995), Harvard School of Public Health: Francois-Xavier Bagnound Centre for Health and Human Rights.
* HIV/AIDS and Human Rights; International Guidelines (Second International Consultation on HIV/AID and Human Rights, Geneva, 23-25 September 1996) (1998), Geneva: Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS and New York: United Nations.
* Kakar, D.N. (ed.) (1995): AIDS Prevention: The Emerging Challenge, Panchkula: The Environemnt Society of Haryana.
* Mathew, P.D. (1996); AIDS and Law, New Delhi: Indian Social Institute.
* Pavri, Khorshed M. (1992): Challenge of AIDS, New Delhi: National Book Trust, India.
* Report of an International Consultation on AIDS and Human Rights (Geneva, 26-28 Juy 1989) (1991), Geneva: Centre for Human Rights and New York: United Nations.
* Report of the National Conference on Human Rights and HIV/AIDS (New Delhi: 24-25 November 2000) (2000), New Delhi: Butterworths.
The writer is a correspondent of Youth Ki Awaaz and holds interest in researching and presenting an in-depth analysis of issues by quoting the best possible references.