HIV is just an abbreviation used for the Human Immunodeficiency Virus but people see this as highly stigmatized word, perhaps one of the most famously stigmatized diseases ever. For HIV/AIDS, stigma and discrimination can be more devastating than the illness itself and may mean abandonment by a partner or family, social exclusion, job and property loss, school expulsion, denial of medical services and lack of care and support. These consequences, or fear of them, mean that people are less likely to come in for HIV testing, disclose their HIV status to others, adopt HIV preventive behavior or access treatment, care and support. We all should recognize that HIV and AIDS are chronic diseases, and that people living with HIV can have full and happy lives. We have a responsibility to treat those who are struggling with an HIV-positive diagnosis with compassion and those struggling with AIDS with care. Addressing stigma and discrimination is important in mitigating the impact of HIV.
Why stigma for HIV and AIDS?
The root cause for it is mentality of people as well as lack of knowledge. The fear surrounding the emerging HIV epidemic in the 1980s largely persists today. At that time, very little was known about how HIV is transmitted, which made people scared of those infected due to fear of contagion.
This fear, coupled with many myths, means that lots of people falsely believe:
- HIV is associated with behaviors that some people disapprove of (like homosexuality, drug use, sex work or infidelity)
- HIV is only transmitted through sex, which is a taboo subject in some cultures
- HIV infection is the result of personal irresponsibility or moral fault (such as infidelity) that deserves to be punished
- Inaccurate information about how HIV is transmitted, creating irrational behavior and misperceptions of personal risk.
So, World AIDS Day, designated on 1 December every year since 1988, is dedicated to raising awareness on AIDS caused by the spread of HIV infection. Government and health officials, non-governmental organizations and individuals around the world observe the day, often with education on AIDS prevention and control.
World AIDS Day is one of the eight official global public health campaigns marked by the World Health Organization (WHO), along with World Health Day, World Blood Donor Day, World Immunization Week, World Tuberculosis Day, World No Tobacco Day, World Malaria Day and World Hepatitis Day.
World AIDS Day was first conceived in August 1987 by James W. Bunn and Thomas Netter, two public information officers for the Global Programme on AIDS at the WHO in Geneva, Switzerland. Bunn and Netter took their idea to Dr. Jonathan Mann, Director of the Global Programme on AIDS (now known as UNAIDS). Dr. Mann liked the concept, approved it, and agreed with the recommendation that the first observance of World AIDS Day should be on 1 December 1988. All the World AIDS Day campaigns focus on a specific theme. As of 2008, each year’s theme is chosen by the Global Steering Committee of the World AIDS Campaign (WAC).
World AIDS Day Themes: –
|2016||Hands up for #HIVprevention|
|2015||On the fast track to end AIDS|
|2014||Close the gap|
|2012||Together we will end AIDS|
|2011||Getting to Zero|
Many of the people most vulnerable to HIV face stigma, prejudice and discrimination in their daily lives. This pushes them to the margins of society, where poverty and fear make accessing healthcare and HIV services difficult.
Way forward to end HIV stigma and discrimination
Public health law examines the authority of the government at various jurisdictional levels to improve the health of the population within societal limits and norms.
Recently in previous month cabinet approves amendments to the HIV and AIDS (Prevention and Control) Bill, 2014.
The Union Cabinet under the Chairmanship of Prime Minister Shri Narendra Modi has given its approval to introduce official amendments to the HIV and AIDS (Prevention and Control) Bill, 2014.
The HIV and AIDS Bill, 2014 has been drafted to safeguard the rights of people living with HIV and affected by HIV. The provisions of the Bill seek to address HIV-related discrimination, strengthen the existing programme by bringing in legal accountability and establish formal mechanisms for inquiring into complaints and redressing grievances. The Bill seeks to prevent and control the spread of HIV and AIDS, prohibits discrimination against persons with HIV and AIDS, provides for informed consent and confidentiality with regard to their treatment, places obligations on establishments to safeguard rights of persons living with HIV arid create mechanisms for redressing complaints. The Bill also aims to enhance access to health care services by ensuring informed consent and confidentiality for HIV-related testing, treatment and clinical research.
The Bill lists various grounds on which discrimination against HIV positive persons and those living with them is prohibited. These include the denial, termination, discontinuation or unfair treatment with regard to:
(ii) educational establishments,
(iii) health care services,
(iv) residing or renting property,
(v) standing for public or private office, and
(vi) provision of insurance (unless based on actuarial studies). The requirement for HIV testing as a pre-requisite for obtaining employment or accessing health care or education is also prohibited.
Every HIV infected or affected person below the age of 18 years has the right to reside in a shared household and enjoy the facilities of the household. The Bill also prohibits any individual from publishing information or advocating feelings of hatred against HIV positive persons and those living with them. The Bill also provides for Guardianship for minors. A person between the age of 12 to 18 years who has sufficient maturity in understanding and managing the affairs of his HIV or AIDS affected family shall be competent to act as a guardian of another sibling below 18 years of age to be applicable in the matters relating to admission to educational establishments, operating bank accounts, managing property, care and treatment, amongst others.
The Bill requires that “No person shall be compelled to disclose his HIV status except with his informed consent, and if required by a court order“. Establishments keeping records of information of HIV positive persons shall adopt data protection measures. According to the Bill, the Central and State governments shall take measures to:
(i) prevent the spread of HIV or AIDS,
(ii) provide anti-retroviral therapy and infection management for persons with HIV or AIDS,
(iii) facilitate their access to welfare schemes especially for women and children,
(iv) formulate HIV or AIDS education communication programmes that are age appropriate, gender sensitive, and non-stigmatizing, and
(v) lay guidelines for the care and treatment of children with HIV or AIDS. Every person in the care and custody of the state shall have right to HIV prevention, testing, treatment and counseling services. The Bill suggest that cases relating to HIV positive persons shall be disposed’ off by the court on a priority basis and duly ensuring the confidentiality.
There are no financial implications of the Bill. Most of the activities are being already undertaken or can be integrated within the existing systems of various Ministries under training, communication and data management, etc. The Bill makes provision for appointment of an ombudsman by State Governments to inquire into complaints related to the violation of the Act and penal actions in case of non-compliance. The Ombudsman need not be a separate entity, but any existing State Government functionary can be deputed or given additional charge.
There are approximately 21 lakh persons estimated to be living with HIV in India. Even though the prevalence of HIV is decreasing over the last decade, the Bill would provide essential support to National AIDS Control Programme in arresting new infections and thereby achieving the target of “Ending the epidemic by 2030” according to Sustainable Development Goals.
Empowerment programs :
There should be specific programs that emphasize the rights of people living with HIV as well as being made aware of their rights is a well-documented way of eradicating stigma. People living with HIV can be empowered in order to take action if these rights are violated.
Ultimately, adopting a human rights approach to HIV and AIDS is in the public’s interest. Stigma blocks access to HIV testing and treatment services, making onwards transmission more likely. The removal of barriers to these services is key to ending the global HIV epidemic.
Reducing stigma and discrimination among healthcare workers :
Government, in collaboration with civil society and international partners should develop initiatives to sensitize healthcare workers in both clinical and non-clinical settings. Improving the attitude of healthcare workers doesn’t just improve care for people living with HIV but has wider societal benefits. The stigma-reduction programs will be implemented throughout the country with domestic funding.
Strengthening the rights of people living with HIV through Digital-India Initiative :
Although our Constitution protects all citizens from discrimination in employment, education and housing and ensures our right to privacy, there is ambiguity in the way these provisions apply to people living with HIV and to key affected populations.
The Patients’ Charter protects people living with HIV from discrimination within the healthcare system, but they are difficult to enforce outside of public health facilities. In addition, consensual sex between adult males and sex work is criminalized, deterring sex workers and MSM from seeking healthcare services.
To overcome these obstacles, we should develop a web-based reporting mechanism. People living with HIV can directly report to the authority by SMS or through the reporting system’s website, and they can choose to remain anonymous. This triggers an investigation involving human rights organizations and lawyers. Complaints of discrimination will be recorded and be resolved.
HIV- stigma Index :
Despite great efforts being made in the area of prevention of HIV/AIDS and in the treatment and care of people living with HIV (PLHIV) through innovative programming and inclusive policies, large numbers of PLHIV in India still have to live with the reality of stigma and discrimination faced in multiple settings. The PLHIV Stigma Index, aims to documenting the extent and forms of stigma experienced by PLHIV, examine and measure changing trends in HIV related stigma and provide an evidence base for policies and programs informed by real experiences of PLHIV. The PLHIV Stigma Index study is the first of its kind to quantify the stigma and discrimination experienced by people living with HIV. There should be a web based portal to quantify it whole country-wide.
Role of Media/Celebrities/Leaders/Preachers :
Amidst the ongoing efforts being taken by authorities towards making the future more brighter for the people living with HIV, the media will have to take greater responsibility. The media alone can raise the level of sensitivity among the masses and take our society towards becoming a more inclusive one.
Similarly, celebrities, leaders, preachers are essential part in mass mobilization. Government should think on this also.
“Change is the law of nature.” Everything on this Earth is bound to change but as far as social change is concerned it is an extremely slow but a continuous process. India needs positive change. We need an integrated approach of Central, state Governments’ various departments, NGOs, International Organizations as well as other stakeholders.
All major campaigns like Skill India, Digital India, Make in India, Start-up India, Stand-up India should be integrated for empowerment of persons with HIV positive status & there should be specific section in all policies because inclusion matters.
Government merely couldn’t do this. We, people must have to contribute something for betterment of these persons. With policies, citizen initiatives, technological progress, and popular media coming together, the challenges of access, acceptance, and inclusion will get addressed. Until this is done, approximately 21 lakhs people will continue to live in economic, social, and physical vulnerability.