Tej Shah, Grade 11

High School Finalist
Chicago, IL

Fighting HIV/AIDS Stigma in India

I. INTRODUCTION

My father’s ancestral home in Mumbai was always crowded. A large house with stories around every corner and the warmest sounds emanating from within, my grandfather employed several maids and domestic workers to take care of it. These women would clean, cook, take care of my father, and more as he grew up within its walls. However, one maid was often separated from the rest: she was HIV-positive.

Infected by her promiscuous husband, my father’s maid suffered twice. Not only did she struggle with access to treatment or education about HIV/AIDS as a low-income woman, but arguably, the town punished her more extensively. Slowly, my father’s home became less crowded; friends and relatives were wary of contracting the disease from simply being around her and decided to avoid the home entirely. Though my grandfather allowed her to continue employment for them, her positive status drove her family to completely abandon her. Isolated and alone, as society turned on her, her body’s immune system quickly followed suit.

Across India, millions of people suffering physically from HIV/AIDS have the additional burden of social discrimination, stigmitization, and denial. Overwhelming hostility has encouraged those affected to remain silent, and thus, avoid testing, treatment, education, and more preventive/curative services. Individuals looking for support and care are instead thrown into a never-ending cycle of illness.

What can we do to help?

II. SOCIETAL ROOTS

I firmly believe that the most significant issue facing India today is the fact that the social stigma against HIV/AIDS blocks treatment and chronic care for HIV-positive individuals across India. HIV is seen as a disease of “others”—those whose lifestyles are considered “perverted,” “sinful,” or “deserving” of illness.

As of 2022, there are over 2.31 million people living with HIV/AIDS (STAC, 2022); though an undeniably staggering number, a combination of weaknesses in surveillance systems, testing bias, and lack of testing access suggest a significant element of underreporting. In reality, the number of people living with HIV is so much larger. Despite India experiencing a downward trend in both new and total cases since the epidemic’s peak in 2000, HIV/AIDS is still impacting millions of people in the farthest corners of the country.

HIV/AIDS stigma arises mainly from a lack of knowledge about the nature of the disease. Individuals may believe that it can be spread through physical touch or direct contact, or even more mystical, paranoid modes of transmission. Additionally, many people view the disease as only affecting certain groups of people which encourages them to project negative value judgments. Gay men and/or men who have sex with men, sex workers, hijras, truck drivers, and injection drug users are among the most represented in people living with HIV/AIDS. It is here that stigmatization transforms into discrimination. A study on attitudes towards positive individuals found that over 36% of respondents felt it would be better if infected individuals killed themselves; the same percentage believed that infected people deserved their fate (Ambati, Ambati & Rao, 1997). A hostility index used in this study revealed that almost 90% of respondents harbored at least one hostile attitude towards people living with HIV.

According to the Joint United Nations Programme on HIV/AIDS (UNAIDS), there are a variety of manifestations that this stigma results in:

“Refusal to provide treatment for HIV/AIDS-related illness; physical isolation in the ward; refusal to lift or touch the dead body of an HIV-positive person; blocked access to spouse, children, or other relatives; blocked entry to common places like village or a neighbourhood area; removal from job; social distance; labelling and name-calling...”

It is undeniable that the HIV/AIDS epidemic in India is not just a physiological crisis, but a social one.Work must be done on both fronts in order to truly resolve the epidemic.

What can the U.S. do to provide aid? Where does Indian-American philanthropy fit into all this?

III. FIGHTING BOTH HIV AND STIGMA

I believe that work must be done and change must be enacted through two unilateral prongs: individual and systemic. On the individual level, Indian-Americans should focus on preserving the socioemotional health of HIV-positive individuals across India. The IPA can utilize its extensive global influence to institute a pen pal program for people of all ages with ostracized HIV-positive men, women, and children who could benefit from support and visibility. Something as small as a friendly letter from overseas can make an isolated person feel less alone, a practice that has been utilized for a multitude of causes throughout history. This campaign can also utilize social media campaigns to combat social isolation by creating and overseeing digital spaces for HIV-positive individuals to connect with each other. Adversity births community, and we can use it to battle stigma across India.

Systemic change is considerably more intensive. Funding must be put towards the creation, dissemination, and implementation of education campaigns to reduce barriers to care, preventing stigma by dismantling myths. Greater effort must be done to increase testing access as well as availability of treatment resources. Additionally, given the magnitude of hostility from the medical field alone—a somewhat counterintuitive fact—the IPA should partner with other NGOs and non-profit organizations to set up treatment centers with sensitivity-trained staff. While the individual level deconstructs inequity from the inside, the systemic prong defeats it from the outside.

In the globalized, technologically-oriented world we live in, it is vital that our campaigns utilize social media effectively. Youth aged 15-24 are the most connected people online in society, and it is immensely important that we engage these individuals to produce transformative change. The creation of media, Instagram/Twitter campaigns, celebrity partnerships, and more would further our mission of deconstructing stigmatization.

Several non-profit organizations are working courageously and strategically to improve the HIV/AIDS crisis in India. The Mahesh Foundation is an NGO that houses youth affected by HIV/AIDS—often orphans—as well as provides education, community support, and outreach/advocacy for HIV-positive men, women, and children around India. Together, they’ve housed over 40 children, supported over 2500 families, and more to ameliorate the consequences of the epidemic. Alliance India is another organization that helps sustain community and governmental responses to HIV/AIDS. They provide care and service to over 1.6 million people living with HIV, as well as outreach resources for transgender individuals, IV drug users, female sex workers, men who have sex with men, and youth. I am inspired by their efforts and I hope to join them in decreasing the burden of HIV/AIDS stigma and disease in the Indian subcontinent.

Everyone deserves to feel healthy. They deserve to feel loved, to feel cared for, to move about the stages of life with others by their side. HIV-positive individuals across India are no different. Scientists around the world have worked tirelessly to ensure that HIV isn’t a medical death sentence; now, it is our job to ensure that it isn’t a social one, either. Together, we can stop the stigma associated with HIV/AIDS and preserve the lives of millions to come.

References

“Alliance India: Home.” Alliance India, https://allianceindia.org/. Accessed 22 May 2022.
Bharat, Shalini. India: HIV and AIDS-related Discrimination, Stigmatization and Denial. UNAIDS,

2001.Accessed 22 May 2022.
“Mahesh Foundation.” Mahesh Foundation:We Care For The Uncared,

https://maheshfoundation.org/.Accessed 22 May 2022.
Maria L Ekstrand, et al. "HIV stigma is a barrier to achieving 90-90-90 in India".The Lancet HIV

5. 10(2018): e543-e545.
Steinbrook, Robert. "HIV in India — A Complex Epidemic". New England Journal of Medicine

356. 11(2007): 1089-1093.
Weerakoon, Esala Ruwan. “Fact Sheet on HIV/AIDS-2022.” SAARC TB and HIV/AIDS Centre ,

2022, https://www.saarctb.org/fact-sheet-on-hiv-aids-2022/.Accessed 22 May 2022.