Nevertheless, there are numerous organizations that are working tirelessly to combat the general lack of information about HIV, as well as the rampant stigma that is associated with it. One such organization is The YP Foundation, who through their Know Your Body, Know Your Rights (KYBKYR) division is seeking to dispel myths and misunderstandings about HIV and sexual health among young people in India.
What follows is an interview on stigma, HIV and sexual health in India with Sukhmani Kaur, Peer Educator at the Know Your Body, Know Your Rights division of The YP Foundation. In her time as a Peer Educator, Sukhmani has held workshops on comprehensive sexual health & reproductive rights, and HIV/AIDS with over a 100 girls and young women across India.
Sukhmani: The Know Your Body, Know Your Rights branch of The YP Foundation is a youth-led program which provides young people with an opportunity to enhance their knowledge and skills in the fields of health, gender, education, sexuality and human rights. It enables them to create, strengthen and promote new policies and programs by building leadership, with a special focus on peer education.
The peer educators are trained thoroughly on sexuality education and motivated to broaden their perspectives by addressing the various issues of stigma and discrimination at the national and international level. They are encouraged to think about the various possible solutions to the problems that dominate the sphere of sexuality, gender and health. The role of the peer educator extends to spreading awareness and imparting knowledge among other young people about stigma, and to also shed light on the common issues of discrimination with a set of coping strategies, through various workshops and advocacy programs.
SAN: What role do you think the persistence of stigma plays in the continuing prevalence of HIV and AIDS in India?
Sukhmani: The stigma attached to HIV and AIDS exists in a variety of ways, including shunning, discrimination and avoidance of those living with HIV. Stigma-related violence can prevent many people from seeking HIV testing, which could ultimately perpetuate the spread of HIV. Many people fear the absence of confidentiality and are consequently unable to disclose their HIV status.
Fear of rejection and violence also prevents people from seeing a doctor and seeking a secured treatment. Also, the widespread perceived association of AIDS with homosexuality, prostitution and drug abuse, which are already stigmatized in Indian society, has generated intense fear and resentment among the population at large. At a policy level, the stigma associated with HIV can deter the government from taking fast, effective action against HIV and AIDS. Thus, stigma is an important barrier to public action, making AIDS the silent killer.
SAN: Do you think there is a strong correlation between the absence of testing services, lack of general information and the existence of taboos and stigma?
Sukhmani: Yes, undoubtedly there is a strong correlation between the absence of testing services, lack of general information and the existence of stigma and taboos. In health care settings, people living with HIV can experience stigma and discrimination such as being refused medicines or access to health facilities, receiving HIV testing without consent, and a lack of confidentiality. Many people do not get to choose to who, when and how to disclose their HIV status.
In the workplace, people living with HIV may suffer stigma from their co-workers, in the form of social isolation, or discriminatory practices such as termination of employment. Fear of an employer's reaction can also cause anxiety to a person living with HIV.
Despite the best efforts of civil society organizations, in India a large proportion of the population is still unaware of the distinction between HIV and AIDS, where the two terms are used as synonyms. This can arguably be one of the major causes for the generation of various myths surrounding HIV and AIDS. Also, a considerable number of people do not have adequate access to clean and secure health facilities, condoms and ART therapies. Because of the lack of general information, many are not aware of the modes of transmission and prevention, and therefore associate irrelevant actions, such as holding hands, kissing and hugging to HIV transmission.
Sukhmani: HIV and AIDS are major causes of concern for the Government of India. The government's major AIDS control initiative is the National AIDS Control Program and the premiere AIDS agency is the National AIDS Control Organization (NACO). The organization attempts to provide a dignified support to all the people living with HIV, as well as access to quality health care.
With sustained effort, the government has been successful in reducing HIV transmission through blood transfusion by ensuring the availability and safety of blood in blood banks. Mother to child transmission of HIV has also been reduced considerably by providing access to various testing services and experienced counseling. With the effective use of media, the government has also attempted to impart knowledge about the various modes of transmission and prevention. Condoms have also been made cheaper and easily available in some areas, which has also helped in the reduction of other sexually transmitted diseases.
However, to reduce the stigma and discrimination that surrounds HIV and AIDS, the government needs to redirect its focus on comprehensive sexuality education. All adolescents and adults should have access to sex education. People should also be provided detailed information about the various modes of transmission of HIV, and ways to prevent it, so as to dispel myths that surround HIV and AIDS. The stigma around the use of condoms should be eliminated for its effective usage. Also, it is imperative to completely eliminate stigma related violence in workplaces and health care centers. By improving the implementation of the policies undertaken by the various centers at the state level, the government could also make the access to testing services and medicinal drugs affordable and convenient.
SAN: In your work, have you seen a reduction in the stigma associated with HIV, especially among young people?
Sukhmani: The Know Your Body Know Your Rights Program of The YP Foundation creates and advances platforms for young people to advocate with decision makers for Comprehensive Sexuality Education. With a special focus on the rights-based approach, the program has been successful in reducing stigma associated with HIV and AIDS in the locations that it has worked in. In addition to providing detailed and accurate information about HIV, KYBKYR also attempts to eliminate the myths and misconceptions surrounding it. Other key objectives include sensitizing people about all forms of violence and discrimination, increasing access to quality health care, educating the youth and inculcating value education and clarification.
KYBKYR has also been successful in strengthening youth led initiatives and movements and advancing young people's human rights by building leadership. Various taboos and issues of discrimination are carefully addressed with accurate coping methods and strategies. Realizing the importance of educating people about HIV and AIDS, more and more young people have been targeted for spreading awareness about its causes, prevention and treatment. Also, it is important to realize that AIDS is not 'someone else's problem'. It is an issue that everyone should fight for, so as to completely eliminate all the myths and misconceptions and treat those living with HIV with dignity and respect.