“When I am happy, people ask me ‘how can a person with HIV be happy?’ As if I do not deserve happiness due to my illness,” said a 15-year-old girl from Hajipur in Bihar in July 2021.

In 2011, her father had died of acquired immunodeficiency syndrome, or AIDS, that is caused by the human immunodeficiency virus – HIV. Back then, even the teenager’s mother had been unaware of the reason for her husband’s chronic illness and death.

With no support, her mother had to take up daily wage work to make ends meet and had no time to take care of her own health. When she began falling sick frequently, she got a blood test done and only then found out that she and her daughter, then two years old, had HIV.

It was not just the illness that worried the mother, but the fear of being abandoned by her community. Following years of medical check-ups at the district antiretroviral treatment centre, the mother and daughter were able to achieve a low viral load. However, due to poor compliance of the medication regime, the daughter fell critically ill, leading to several visits to the district hospital.

In the absence of specialised medical care and diagnostic biomarkers for infections at the hospital, the teenager was referred to a dedicated facility in Bihar for the symptomatic management of AIDS.

Stigma, access to care

Patients with HIV have a high viral load and low CD4 count – white blood cells that fight infection and are responsible for the immune system. If left untreated, it makes patients susceptible to tuberculosis, brain infections, complications in vital organs and other infections.

Such patients often worry about what others may say and even think that it is “better to die than to live with the disease”.

In 2019, the non-profit Médecins Sans Frontiéres India and the All India Institute of Medical Sciences at Patna conducted a study involving 35 individuals living with HIV, 10 community members and 26 healthcare workers to explore barriers to accessing care.

The study found that the factors included the perception of HIV as a “dirty” illness, the non-consensual disclosure of someone’s HIV status, the refusal to treat individuals living with HIV and fear among health providers of getting HIV. India’s National AIDS Control programme emphasises HIV testing, safe sex and the rights of patients but persistent myths about the disease also need to be addressed.

Self-stigma and shame are a result of internalising societal apathy towards HIV-AIDS. Patients are often at the receiving end of micro-aggression – verbal or behavioural slurs, whether intentional or unintentional, that communicate hostile, derogatory or negative attitudes toward stigmatised groups.

Patients have reported hearing remarks such as “you look healthy, doesn’t seem like you are HIV-positive” or others saying “you must be depressed being HIV positive”.

Fears of being judged hinder the access of HIV-positive individuals to public health facilities. Patients also refrain from disclosing their condition. The burden of self-stigma outweighs that of the disease itself.

In 2020, the University of Connecticut and University of Delaware in the United States conducted a study on a sample of 236 Black men living with HIV. That study also found that micro-aggression and self-stigma obstruct access to care and continuing treatment.

But the same research has also shown that social support serves as a buffer from the effects of stigmatising experiences.

Rights and dignity

At Médecins Sans Frontiéres’s Garima Ki Kiran facility in Patna, the focus is on providing mental healthcare along with medical treatment to reduce the HIV-associated mortality in Bihar. This holistic model focuses not just on survival but also on the rights and dignity of patients.

Simple acts of reassurance by the healthcare providers such as gently holding the patient’s hands and empathetic listening can work wonders in reducing self-stigma and lifting morale.

These practices contribute towards increasing the coping skills and self-reliance of the patients and their families to build a promising life ahead.

Patients also develop an adherence towards their own health, which in turn enables the clinic to achieve a low mortality rate. It is not just the link between access to care and treatment that matters to individuals living with HIV but also the human connection between a patient and healthcare provider.

This ignites confidence, faith and hope in the treatment, assuring the patient to believe, “Yes, I can also lead a respectful and dignified life.”

Purnima Jain is the Mental Health Activity Manager at MSF’s Garima Ki Kiran clinic for advanced HIV patients in Patna, Bihar.