HIV AIDS and Human Rights: The Socio-Legal Challenges and the Role of NGOS
May 12, 2022 • Nikita Saha
Author's Profile: The author, Bhakti Parekh is enthusiastic about spreading awareness through the written word. She has a love for learning different languages as language gives insight into different thought processes and cultures. She is an avid reader and one of her favorite genres is crime thrillers.
The Human Immunodeficiency Virus commonly known as HIV is mentioned a virus. This kind of virus weakens the immune system and leaves the body vulnerable to other infections and cancers. Acquired Immune Deficiency Syndrome more commonly known as AIDS is the final stage of HIV infection. It leads to a combination of symptoms that are the result of a breakdown of the body’s immune system. HIV is transmitted primarily through sexual intercourse, through transfusion of infected blood, by the use of contaminated or non-sterile needles, and from an infected mother to the unborn child.[i]
It can be said that HIV/AIDS is a great challenge faced by India. According to figures given by the National AIDS Control Organization (NACO), in 2004, in India, approximately 5.1 million people are infected with HIV or living with AIDS.[ii] As per the recently released India HIV Estimation 2019 report, there were an estimated 23.48 lakh people with HIV nationally. The highest number of people with HIV in a state is estimated at 3.96 lakh in the state of Maharashtra which is followed by Andhra Pradesh at 3.14 lakh.[iii]
Sadly, in India, this infection or virus has a very unpleasant social stigma attached to it. People infected with HIV or AIDS are discriminated against everywhere in society and are looked down upon. However, it should be noted that India has made efforts to safeguard and secure the rights of people living with HIV.
HUMAN RIGHTS INVOLVED
Human Rights are the most basic of rights that are inalienable and cannot be taken away by anyone. People are entitled to these rights by the very fact that they are humans. These rights are inherent to all human beings, regardless of sex, nationality, race, religion, or any other status or classification. Human rights include and are not limited to the right to life and liberty, freedom of opinion and expression, right to work, and right to education.[iv]
To understand how human rights issues arise for people living with HIV/AIDS, it is necessary to first understand the relationship between human rights and HIV/AIDS needs to be understood. The three major areas where the relationship between the two is highlighted are increased vulnerability, discrimination, and stigma, and impedes to an effective response.[v]
- Increased Vulnerability: Some groups of people are more vulnerable in terms of contracting the disease or virus because of their inability to exercise their basic civil, political, and socio-economic rights. Women in prostitution and people living in poverty are the most vulnerable and are unable to access treatment or care for HIV.
- Discrimination and Stigma: People infected with HIV are often discriminated against in every aspect of their lives and are stigmatized and treated as untouchables or outcasts. The stigmatization and discrimination lead to various obstacles for the people with HIV/AIDS in terms of exercising their rights to employment, housing, education, etc. The stigma associated with the infection or disease thus leads to further vulnerability.
- Impedes to an effective response: Human rights need to be respected and need to be understood properly. In an environment where human rights are not respected and people are stigmatized, the strategies made to address the epidemic are hampered. When the rights of all are not respected equally, it leads to an imbalance in the response or treatment being offered.
Various human rights of people with HIV/AIDS are thus affected due to the stigma around the infection which in turn leads to discrimination which turns leads to the violation of their basic human rights.
Basic human rights that are affected for people living with HIV/AIDS are:
- Right to Equality: The right to equality is a basic human right and should be protected. For people with HIV/AIDS, this right is affected as they are discriminated against and not treated equally. Such people are not given equal opportunities when it comes to education, employment or housing, etc.
- Right to Life and Personal Liberty: It has a very broad scope. The Right to life and personal liberty is a right that encompasses various rights in itself. HIV/AIDS patients face issues in exercising this right as well. The right to life includes the right to live a life with dignity. However, due to stigmatization, people with HIV/AIDS are stripped of their dignity in many ways.
- Right to Health and Access to Treatment: The right to health and the right to access treatment are other basic human rights that are affected by HIV/AIDS patients. Many of the people suffering from HIV/AIDS are marginalized and due to the fear of discrimination and stigmatization by society, tend to not actively seek help or treatment. The right to confidentiality is also affected at times.
- Right to Employment: The right to employment is closely related to the right to life and the right to equality. Employers in particular discriminate against people with HIV/AIDS and do not hire them or do not pay them equally. This scenario also persists due to uninformed or misinformed policies that are formed by companies about HIV/AIDS.
- Right to Privacy: Every person has the right to privacy. No one should be subject to interference with his privacy. However, this right is also affected as at times, the state can call for information about a person’s life if there is reasonable ground to believe that it is necessary for the interests of the public. This right thus gets affected and has a direct bearing on the other rights of HIV/AIDS patients.
- Right Against Discrimination: Every person has a right to not be discriminated against. However, due to the stigmatization of HIV/AIDS infection or disease, people with HIV/AIDS are discriminated against in almost every sphere of their life.
LAWS INTERNATIONALLY AND IN INDIA
Various laws have been brought into place with regard to human rights in India and the international space as well. Internationally, over some time, multiple conventions have been brought into place and have been signed by countries worldwide.
A few international conventions that deal with human rights are:
- The Universal Declaration of Human Rights (UDHR), 1948: This is a milestone in the history of human rights. It is considered to be the cornerstone of international human rights law and puts forth the principles of equality before the law, rights of life, liberty and security, and privacy.
- The International Covenant on Civil and Political Rights (ICCPR): It is a treaty that commits States to respect and protect the civil and political rights of individuals. It includes the rights to life and liberty, freedom of expression and religion, and also the right to privacy and the right against discrimination.
- The International Covenant on Economic, Social, and Cultural Rights (ICESCR): It commits parties to work toward the granting of socio-economic and cultural rights. It deals with many rights that are important in the context of HIV/AIDS such as the rights to work, social protection, education, and health.
- The International Labour Organization Convention No. 111 on Discrimination (Employment and Occupation): This convention deals with the right to equal opportunity or treatment in respect of employment and occupation in such a manner to eliminate discrimination.
India has been working toward securing the rights of people with HIV/AIDS as well as toward spreading awareness and reducing the transmission of the disease or infection.
- Human Immunodeficiency Virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS) (Prevention and Control) Act, 2017: The Bill was passed by the Rajya Sabha in March 2017 and a month later in the Lok Sabha. It received presidential assent on April 20, 2017.[vi]It came into force on September 10, 2018. This Act was brought into place to safeguard the rights of the people with HIV/AIDS. The Act aims to control and prevent the spread of HIV or/and AIDS and further provides for punishments for those discriminating against the ones affected by the virus. It also prohibits unfair treatment or discrimination against people with HIV/AIDS on any grounds whatsoever.
- Fundamental Rights protected under Chapter III of the Constitution of India: Article 14 and Article 21 deal with the basic rights that are protected. The right to life being broad includes in its fold various related rights such as the right to live with dignity, the right to health, the right to social security, the right to earn a living, etc. Article 14 enumerated the right to equality and the right against discrimination.
- Immoral Trafficking Prevention Act, 1986:It deals with sex workers. The Act provides for the medical examination for the detection of HIV/AIDS. It has further made provisions for compulsory testing as well.
- Indian Medical Council Act, 1956: The Medical Council of India has laid down certain duties that have to be observed by doctors towards HIV/AIDS patients. This imposition of duties on the doctors is another way of safeguarding the rights of the patients. These duties include the duty to take informed consent, the duty to disclose information and risks to the patients; and the duty of the physician to not abandon his duties for the fear of contracting the disease himself.
- National AIDS Control Organisation (NACO): The Ministry of Health and Family Welfare has a division named the National AIDS Control Organisation. This organization was constituted to implement the National AIDS Control Programme. The NACO has an objective and vision of an India where every person living with HIV has access to quality care and is treated with dignity. The NACO offers various services and some of the preventive services are awareness generation, condom promotion, prevention of parent-to-child transmission, etc. The policies also have guidelines on targeted interventions for high-risk groups like injecting drug users, men having sex with men, female sex workers, etc.
The two major challenges faced by people living with HIV/AIDS are stigma and discrimination. These challenges have a socio-legal character and cause further challenges in the implementation of the laws which are meant for the protection of the patients.
“In India, as elsewhere, AIDS is perceived as a disease of ‘others’ – people living on the margins of society, whose lifestyles are considered ‘perverted’ and ‘sinful’.”[vii] The fact remains that in India, “community and family honour continue to constitute the most important anchors of individual identity”[viii]
The stigma around the disease or the virus leads to the people with HIV/AIDS being made social outcasts. Being perceived as outcasts leads to being discriminated against. Stigmatization and Discrimination take place happens in a way that then infringes and violates the basic human rights of the people with HIV/AIDS. The National AIDS Control Programme of India has also recognized that stigma is a significant barrier to HIV prevention efforts. The Stigma associated with AIDS is what hampers the uptake of voluntary HIV counselling and testing, adherence to antiretroviral treatment, and delaying general health-seeking among people with HIV/AIDS[ix]
The basic challenge, then is that the rigid mindset of people needs to change. People need to be educated and made aware of the various ways in which the disease can be transmitted and how the transmission can be prevented and the disease controlled. Another challenge faced due to being misinformed or not aware is that people believe that just being near or in contact with people suffering from HIV/AIDS will lead to them getting affected by the disease. What is required to tackle the situation is something that NGOs work towards.
ROLE OF NGOS
It needs to be noted that NGOs are essential in any civil society. “NGOs are an integral part of civil society, especially in developing nations such as India. They not only participate in civil society, but they also work as a transformative force as well.”[x] NGOs usher in change and development through changing perceptions as well as through advocating rights. “The ways in which development NGOs perceive civil society, and consequently plan projects to facilitate the work of civil associations, can have a significant effect on the evolution (or lack of it) of civil society in the countries in which they work”[xi]
As can be seen, NGOs play an instrumental part in the development of the nation. In India, NGOs play various roles in the context of HIV/AIDS. The NGOs are working for the various causes related to and associated with HIV/AIDS. From spreading awareness to consulting with the Government, to pushing forward better legislation, to changing mindsets; the NGOs work relentlessly and tirelessly towards their cause.
It would be best to state a few examples to understand the dynamic role of the NGOs. First, the Naz Foundation (India) Trust is an NGO that has used a rights-based holistic approach to fight HIV by focusing on prevention and treatment. They have been battling HIV by making an effort to reduce stigma, in the improvement of health, and empower families. The Naz foundation is the one that had initially filed for the decriminalization of the anti-sodomy law of India. Another example that can be given in this regard is that of the Lawyers Collective NGO. This NGO has dealt with the law relating to HIV/AIDS since the late 1980s when it handled the first HIV litigation in India. The NGO since then has attempted to fight cases for the rights of people with HIV or AIDS. The Lawyers Collective has made a significant contribution to the development of the law on HIV, especially in areas of non-discrimination in employment, negligence in blood transfusion, and access to health care.
It should be noted that stigma and discrimination are the major socio-legal challenges that people living with HIV/AIDS face in the implementation of their human rights. The human rights of all individuals need to be taken seriously, but the stigma surrounding HIV/AIDS is what causes the human rights of patients not to be taken seriously.
There is a need to spread awareness and battle the stigma to help these individuals in exercising their rights. It can be said that stigma is the factor that leads to the deprivation of rights whether voluntarily or involuntarily and that until this stigma is not reduced, the problems and challenges will persist.
FREQUENTLY ASKED QUESTIONS
Q. What are the various rights of patients living with HIV/AIDS that are infringed?
A. People living with HIV/AIDS face various challenges and many of their human rights are infringed on due to the stigma surrounding the virus or disease. The various rights that are infringed or violated are the right to life and liberty, right to equality, right to residence, right to employment, right to social security, right to health, and the right to access to treatment.
[i] Rights of HIV/AIDS patients in India, https://www.helplinelaw.com/civil-litigation-and-others/RHPI/rights-of-hivaids-patients-in-india.html (last visited Apr 11, 2021).
[ii] KeshavanKodandapani& Patricia T. Alpert, AIDS in India: When Denial Kills, 20 Home Health Care Management & Practice, 21–26 (2007).
[iii] HIV Facts & Figures: National AIDS Control Organization: MoHFW: GoI HIV Facts & Figures | National AIDS Control Organization | MoHFW | GoI, http://naco.gov.in/hiv-facts-figures (last visited Apr 11, 2021).
[iv]Human Rights United Nations, https://www.un.org/en/global-issues/human-rights (last visited Apr 11, 2021).
[v]HIV/AIDS and Human Rights OHCHR, https://www.ohchr.org/en/issues/hiv/pages/hivindex.aspx (last visited Apr 11, 2021).
[vi]What is the HIV/AIDS Act 2017? The Indian Express, https://indianexpress.com/article/what-is/what-is-hiv-aids-act-2017-5350057/ (last visited Apr 12, 2021).
[vii] KeshavanKodandapani& Patricia T. Alpert, AIDS in India: When Denial Kills, 20 Home Health Care Management & Practice, 21–26 (2007).
[viii] R. Ramasubban, Political intersections between HIV/AIDS, sexuality and human rights: A history of resistance to the anti-sodomy law in India, 3 Global Public Health, 22–38 (2008).
[ix] Shalini Bharat, A systematic review of HIV/AIDS-related stigma and discrimination in India: Current understanding and future needs, 8 SAHARA-J: Journal of Social Aspects of HIV/AIDS , 138–149 (2011).
[x] Pareena G. Lawrence & Maria C. Brun, NGOs and HIV/AIDS Advocacy in India: Identifying the Challenges, 34 South Asia: Journal of South Asian Studies, 65–88 (2011).
[xi] Alan Whaites, ‘Let’s Get Civil Society Straight: NGOs, the State, and Political Theory’, in Deborah Eade (ed.), Development, NGOs, and Civil Society (Oxford: Oxfam, 2000), p.124