Zero HIV Stigma Day: What goes into India and the world's fight against HIV?

Every year, on July 21 the world marks Zero HIV Stigma Day. The day coincides with the birthday of Prudence Mabele, an activist who was the first woman in South Africa to disclose her HIV (Human Immunodeficiency Virus) status in 1992.

The history of HIV

The journey of the virus has been a long one.

Scientists believe that HIV originally came from a virus specific to chimpanzees in West Africa during the 1930s and was transmitted to humans through the transfer of blood while hunting. Over the decades, the virus spread through Africa and to other parts of the world.

In 1981, the United States started reporting unusually high rates of rare kinds of pneumonia and cancer cases in young gay men. Cases were also reported among people who took injectable drugs.

In 1982, the disease was renamed AIDS, or Acquired Immune Deficiency Syndrome. In 1983, it was found that women could be affected by HIV too. In 1986, mother-to-child transmission was discovered.

In 1987, the US approved the first anti-retroviral drug to combat the spread.

As of 2021, 2.3 million people in India are living with HIV or PLHIV (people living with HIV).

It was seen as a death sentence when it was first discovered, but that is no longer the case. There are several treatments available, and more and more PLHIV are leading healthy and happy lives.

This author spoke to Sahil, a professional working to fight HIV and the head of the LGBTQIA+ awareness initiative of the Naz Foundation (India) Trust, to learn more.

What does your work as an HIV prevention professional include?

“My work includes creating awareness through training sessions or our outreach work within the community with college students, doctors, etc. who need to know about HIV, diagnosis, prevention, etc. It also includes promoting prevention methods. PeP (post-exposure prophylaxis), PrEP (pre-exposure prophylaxis), condom use, lubes, etc.

Another part of my job would be linking people who have tested positive to treatment either with a government or private facility. One of the important jobs that Naz does is offer counselling to somebody who is scared that they have exposed themselves to HIV or somebody who has tested positive. HIV testing and pre- and post-counselling are life-saving because we come from the conditioning that HIV is bad. We break that down,” Sahil told WION.

It is an assumption that only gay men contribute to the bulk of global HIV cases. Is this true?

“No, this is not true. Heterosexual people contribute to the bulk of global HIV cases, but yes, the gay population, or gay men specifically, is more vulnerable. Some reports say that this population is 22 times more vulnerable to HIV because of the kind of shame and stigma attached to gay sex, and people often end up meeting their sexual partners in high-risk places.

Who is exposed to HIV depends a lot on your external circumstances and the kind of agency that you have. In countries like India and parts of Africa, it was unique that heterosexual women who were married and had one sexual partner were the largest population to be found to be living with HIV. They were married off young and had no agency in those marriages, and their husbands were having sex with females and men outside of marriage, and eventually, these women and their kids ended up with HIV.”

Is life as an HIV-positive person different or difficult?

“Yes, initially it was both different and difficult, but medical science has progressed, and I am happy to report that life is now not difficult; it is fairly regular as for any other person. We often say in our counselling that various other medical conditions pose challenges greater than living with HIV.

It is different in the sense that you now have to take care of your health. You become more health-conscious and change the way you interact with life in general.

In India, medicine, like the rest of the world, is at a stage where you have to take one a day. There are research studies that are showing very positive results for even injections that can be taken once a month in the future. Even this requirement to take a pill every day is hopefully going to go away soon."

In 2021, there were 2.3 million PLHIV people in India. Are efforts being taken to curb the spread?

“Efforts are being made. However, the HIV prevention programme in India was successful to a point because the government worked very closely with NGOs on the ground. They launched targeted intervention programmes for vulnerable groups.

But, as the virus is becoming more manageable and we are progressing in time, the funding has dried up on the subject. International attention on the subject has dried up. I think this is too soon.

some specific Indian states continue to be vulnerable to HIV due to very specific challenges, as the recent stats of injectable Drug users from Manipur have shown us. The queer population continues to be vulnerable. "

How do days like Zero HIV Stigma Day and Zero Discrimination Day help?

“Days like these definitely help because they bring the required attention to the subject. The attention, which has been fairly reduced in the past 4-5 years internationally, We need to understand that even the government . facilities where people need to go for treatment need to be managed better. Fresh infections keep coming up, and the idea is that we live in a world that is HIV-free, but newer and younger people are testing positive. Days like these help us break that wrong information . down because stigma is as bad as it was at the start of the journey.”

Can you tell me an instance in which a PLHIV person was treated unfairly, and how did you and Naz help them out?

“Living with HIV is manageable, but the stigma continues. Naz has been working in this area for 30 years, and it is fairly common for a PLHIV to be treated unfairly at the workplace or in public places. This person was treated very poorly at the government. ART facility because they were a transperson and they were living with other conditions along with HIV, and they were being referred from one place to another. We went there, and finally they are on regular treatment, and their condition has improved.

Another person who was facing challenges with their employer issued a circular in which there was a list of tests that all employees had to do, and it also included the HIV test. This is against the HIV Act of 2017. No employer can ask for an HIV test, so we did advocacy there because the person did not want their employer to find out their status. Things like these keep happening.”

What is your advice to people about HIV?

“We are all part of a conditioning system, and we grow up fearing HIV so much because of all the myths around it. Nobody teaches us how to protect ourselves and, in case we do end up diagnosed, how to manage and live with it.

Science has advanced so much. Positive people, having children is possible. Marrying a non-PLHIV is possible. Science has advanced, but our fear stems from misinformation. So my advice would be that all of us should know more about the virus. The more we know, the less we are afraid of it, and the less we discriminate against PLHIV. The way it is transmitted needs to be known to everybody. This will lead us to a more equal and kinder world,” Sahil told WION.

It has been close to half a century since HIV was discovered. The world needs to understand that HIV is no longer a death sentence. It is not curable but it is treatable, and people living with it are leading happy and healthy lives. We must also unlearn the myths and learn the science to combat the stigma surrounding the virus.