To this day, 23-year-old Sneha (name changed to respect confidentiality) does not know with certainty how she got infected with the human immunodeficiency virus (HIV). No one else in her family carries the virus. The only plausible explanation she offers is that she got it through an infected injection needle in some healthcare setting.
Since her infancy, Sneha had a hole in her left
eardrum, which would discharge pus. So, she was put on medication for a long
time, which included injectables. Eventually, she had to undergo ear surgery in
2015 when she was 12 years old.
During the general investigations and tests done before
the surgery, she was found to be HIV positive.
Sneha was in a state of shock.
“My mother refused to believe the test results, and
she got my test done again in three different laboratories. But every time the
result was the same. My mother and elder brother also got tested, and both were
HIV negative. And we strongly believe that my deceased father was negative, as
he had undergone multiple heart surgeries and all general investigations were
done then, with no sign of HIV," shared Sneha with CNS ahead of the world's
largest AIDS conference later this month (26th International AIDS Conference or
AIDS2026 on the theme: #RethinkRebuildRise).
Diagnosed with HIV at 12 years of age
Thus, at the tender age of 12, Sneha was diagnosed
with HIV. She was directed to the government-run Niloufer Hospital in Hyderabad,
which has a prominent, designated pediatric ART Centre for HIV management in
children and adolescents.
A year later, Sneha got registered for her medical
check-ups at Blue Peter Public Health and Research Centre (BPHRC) of LEPRA
Society, which also focuses on comprehensive HIV care, support, prevention, and
treatment. Through BPHRC, she came into contact with Cheyutha (Cheyutha is a
Telugu word meaning ‘helping hand’). Cheyutha is a women’s community initiative
to empower women living with HIV through mutual support and collective action.
The organization was started in 2005 by an HIV survivor, Laxmi Priya Kagitha, with
support from the LEPRA Society in Hyderabad. To date, Cheyutha’s Board of
Directors is composed entirely of women living with HIV.
“When Priya madam heard about my plight and our
financial crisis, she started supporting me for my nutrition as well as my
education. I was studying in Class 9 then," said Sneha.
Cheyutha’s helping hand
Sneha, who recently completed her post-graduation in
Social Work, got an opportunity to work with Cheyutha as a field-level worker
for Adolescent Friendly Health Clinics in 2021. These clinics are specialized
healthcare centres designed to meet the unique physical, mental, and
reproductive health needs of young people. Sneha shared that: "The aim was
to work for adolescents living with HIV in the age group of 10 to 19 years,
focusing on their regular medication and overall well-being."
"The children for whom I worked reminded me of my
earlier days when I was newly diagnosed with HIV. At that time, I did not know
much about the disease, and neither did my mother. I just took my pills
regularly because my mother asked me to do so. It was only when I was 17-18
years old that I understood the gravity of my illness and gradually accepted to
live with it," she said.
She faced several challenges, including discrimination
from her relatives. "But my mother always stood by me and took good care
of me. So compared to other children living with HIV, I was in a much better
position," she reflected.
"Around150 adolescents living with HIV with whom
I have been working come from very difficult family backgrounds and faced far
greater challenges than I had. Almost 70% of them were semi-orphans, who
depended on single parents or elderly grandparents. So, due to a lack of proper
care, they would often miss their medication. Some of them had been adopted
without anyone knowing about their positive status. It was only when their
health deteriorated and they visited hospitals that they were tested and diagnosed
with HIV. They also had to deal with a lot of stigma within their family,"
said Sneha.
"I was determined to help these children living
with HIV - project or no project - and started building my rapport with them.
They had gotten infected unknowingly and had to be prepared to deal with their
situation in the best possible manner," she said.
A day of hope: Free check-ups, supplements
& life skills for adolescents living with HIV
"Through Adolescent Friendly Health Clinics, we
hold a day-long camp once every month on a Sunday, so that the participants do
not have to miss school. A medical check-up of all the children living with HIV
is done to monitor their health parameters. They are also given multivitamins,
calcium, iron, and protein tablets free of charge. We also counsel them on why
they should not miss their daily medication, which is essential for our
survival," shared Sneha.
Sneha shared that these health camps provide a safe
space for the adolescents to express and share their thoughts without any
discrimination and stigma, which many of them have to face in their families.
They look forward to these camps and literally wait for that one day in the
month to enjoy their day with other similar participants with no strings
attached.
"Adolescence is the age when they undergo
physical changes, and they also need some career guidance. So, we call a
resource person every month to guide them about their studies and help them in
life skills development." Sneha worked for three and a half years in this
project before it ended in March 2025 due to funding cuts. Now she works as a
peer counsellor in Cheyutha, doing similar work.
"But we continue holding these health camps with
the help of some local donors. I enjoy spending time with the youngsters so
that they feel safe and reassured that whenever they have a problem, they can
discuss it with us and arrive at a solution by themselves with our help."
Sneha is happy that 92% of these 150 children are
virally suppressed. When the project started, less than 55% had viral load
suppression. But within 3 years, the figure rose to 92%. According to the World
Health Organization (WHO), if a person with HIV is virally suppressed, then not
only does the person live a healthy and normal life, but there is zero risk of
any further HIV transmission too - that is why Undetectable equals Untransmutable
or Equals (or treatment is prevention).
From open ostracism to discrimination –
The unfinished battle against HIV stigma
From her personal lived experiences, Sneha laments
that even today stigma and discrimination are very much there, despite India
having an HIV and AIDS (Prevention and Control) Act, 2017, which provides
comprehensive legal rights and prohibits discrimination across education,
healthcare, and housing.
“In the 1990s, people expressed it openly and
ostracised those living with HIV. Things have improved now, but stigma is still
rampant. I see it in the hospitals. Hospital staff behave very differently once
they come to know of our HIV status. Till they know our status, we are treated
like any other patient. But once we disclose our status for any follow-up
medical procedures to be safer, their attitude changes instantly, and they fear
even to touch us or even come near to us," said Sneha.
Sneha’s fears are corroborated by the HIV Stigma Index
2.0 Report from 25 countries (including India). It shows that 13% of people
living with HIV experienced stigma and discrimination when seeking HIV-related
care in the past 12 months, and 25% reported such experiences when seeking
non-HIV-related healthcare, including 12% who reported being denied
non-HIV-related healthcare completely.
High prevalence of self-stigma
“Most of our community also has self-stigma. They do
not want to come forward and share their problems because of self-stigma. Even
I have that fear that people will not understand and would treat you like a
black spot if they come to know of your status. None of my friends know that I
am living with HIV. I have already faced discrimination from my relatives, and
I fear that if I share my HIV status with my friends, I will get the same
reaction from them," said Sneha.
Mirroring trends across the Asia-Pacific region, the
HIV Stigma Index 2.0 data from India reveals that internalized stigma (feelings
of shame, guilt, or self-blame) is significantly high. This psychological
barrier often acts as a major roadblock, causing individuals to isolate
themselves or completely drop out of local health services. The index also
demonstrates a strong correlation between individuals experiencing community
discrimination and those who interrupted their treatment.
“We have to change the way of thinking of hospital
staff and healthcare personnel through advocacy. Despite knowing the causes of
HIV transmission, yet they fear to treat us. We also need to continuously
maintain a link with our stakeholders and share with them the challenges that
we are facing at ground level," said Sneha.
For Sneha, creating awareness in the community, as
well as in the general public, plays a key role in reducing stigma. Moreover,
if people have more knowledge about this infection, they will protect
themselves from getting infected. There should also be some method for the
community to share the challenges they are facing in their daily lives with policymakers.
As per the Government of India's Sankalak Report 2025,
1,894 children got infected with HIV due to vertical transmission
(parent/mother to child during pregnancy or breastfeeding) in 2024. Around
80,000 children living with HIV were receiving the lifesaving antiretroviral
therapy by March 2025. The rate of vertical transmission is still high at
10.75%. This is unacceptable because we can do better. No child needs to be
born with HIV.
We have to #Rise to #Rethink and #Rebuild to
#PutPeopleFirst in HIV responses and strive for a world in which HIV no longer
remains a public health threat.
