Why stigma is a greater disease

[ Lijo Karlo ]

”I was expecting to be reprimanded by the counsellor. I was expecting pity and disappointment, but I was treated with compassion and respect. I am forever grateful for that first conversation with Miss Ripa and Miss Nanya,” says Annu.
To put Annu’s statement in context, this is a write-up on HIV/AIDS, and on something bigger than accompanies it: social stigma.
“The rate of HIV positive cases is going up in Arunachal Pradesh, although not at an alarming rate,” says Koj Tara, Assistant Director, Arunachal Pradesh State AIDS Control Society (APSACS).
According to Tara, 354 HIV positive cases have been recorded in the state as of 31 March, 2018.
“It is very difficult to find out whether the root cause of the increase in the HIV cases is actually due to increase in transmission or because more people happen to get tested and we have them on record. The bottom line is, we don’t have the exact record. This is because prevention cannot be entirely possible without intervention, and intervention is very difficult.
“HIV/AIDS is still a sensitive subject,” says Tara. “We cannot address it fully because of this; and yet, prevention remains our most powerful tool in combating HIV.”
Take a moment to reflect on the things that come to mind when you hear the word ‘HIV’. Learning that you have tested positive can be one of the most difficult experiences. To tread through this experience alone is a more difficult journey. Living with HIV now is a very different experience to what it was many years ago.
On the positive side, HIV treatment has brought a healthier, longer life to the people living with HIV (PLHIV). If we have made such exponential progress in combating HIV, why haven’t our perception of those with the virus evolved alongside? Why does HIV elicit strong reactions from us when it can be managed? Why is the rate of HIV in Arunachal Pradesh increasing? These are not easy questions to answer.
You may ask, “Where are the people with HIV?” “Why haven’t they been vocal?” “How can I believe these success stories?”
Well, HIV is assumed to be a bad affair, which is why it has been sunk to the bottom, weight tied to its ankles. We have a vague knowledge about it, but we do not really understand it.
I spoke with a few amazing HIV positive people to know their stories, and also sat down with the medical officer and the counsellors in the Anti-Retroviral Treatment Centre (ARTC) at the TRIHMS, to understand what it means to be living with HIV today. What follows are stories we seldom hear. These are stories far from unique, but have been lying quiet in silent corners of our neighbourhoods.
Twenty-four-year-old Mr T, who is from Papum Pare district, was diagnosed with HIV in 2017.
“I was diagnosed with HIV when I was admitted in the TRIHMS for an operation. When I confided in my mother and elder brother about being HIV positive, suddenly I was thrown into a life where my mother and my brother were not comfortable looking at me eye-to-eye. There was a shift in the way I was treated at home. I was not allowed inside the kitchen. They wouldn’t touch anything of mine.
They wouldn’t eat anything I touched. I expected these silent moves, but it gradually grew more obvious, and more offensive,” says Mr T.
“My siblings were not allowed to play with me. All of my belongings were kept separately in the house, as if I would infect them with my touch. I made them aware that I was of no risk to them, that I was on medication and my viral load was suppressed. But this discomfort continued to the point that I felt discriminated against,” he says.
Mr K, a 36-year-old man from Naharlagun, has been living with HIV since 2010. I spoke to him through the counsellors working in the ARTC, and it was an emotionally rewarding experience.
Mr K’s positive outlook on his future and his family, and a desire to help the community with his personal experience is commendable.
“Testing positive is hard for anyone. But it doesn’t always have to stay that way. My initial months of people knowing about my condition were really hard for my family. There were gossips all around, and there came a time when I was asked to vacate the rented house I was living in. Fortunately for me, I received tremendous help from the project director of the APSACS,” he says.
“It also came to fists and blows with two people at my workplace. They would say things like it would be my fault if later they tested positive. This really got me thinking how little people are really aware of the actual nature of HIV,” says Mr K.
The stigma attached to HIV is a greater disease than the disease itself. This stigma profoundly shapes the lives of the people living with it. It manifests in many ways. The permeating fear and perception, combined with a lack of understanding, proper knowledge and empathy, not only affects the PLHIV but can also be directed towards their families, friends and relatives, as well.
Facing social scrutiny is the price the PLHIV face for their transparency; so they choose to stay in the dark corners of the society. They feel safe in invisibility. This in turn becomes a major roadblock to people with high risk and HIV/AIDS persons from getting effective treatment.
“The common misconception among the general public is that those who have HIV/AIDS must be bad people, that they must have done something very wrong to have contracted it. The truth is far from this. This is the very reason that holds people back from getting tested. It only takes a single misstep to contract the virus and anyone can get it,” says Subu Nanya, an ICTC counsellor.
“We cannot force someone to take medication. There have been cases where a person is fully aware of their HIV status but holds off or turns down the free treatment available. There are also cases where people choose to register themselves in another state. One main reason is that someone they know may find out. The fear of social scrutiny holds them back. Another reason is, once you start with your medication you have to commit to it for the rest of your life to keep the virus in check, or else you become resistant to the medication. This is difficult, and adherence to treatment is the key to stay healthy,” says ARTC counsellor Bamin Ripa.
There is a lot of work being done for the PLHIV. Most of the programmes are handled by the NACO, which in turn delegates it to the APSACS at the state level, under the health services directorate. Unfortunately, it is not enough. Changing the attitude and the mentality of the people is the real issue.
“When it comes to sensitizing the general public’s perception, awareness programmes should stress that HIV/AIDS is not really directed at ‘people who do high risk acts,’ but at the lack of awareness itself. It needs to be an ongoing programme and not a one-time thing. Sensitization in schools will go a long way. Of course, the whole truth should be conveyed, with no prejudice against HIV,” says counsellor Bamin Ripa.
There is a critical relationship between HIV and stigma. Wanting to know more about how the medical community which works with HIV/AIDS patients sees it today, I went to the TRIHMS.
Dr Moli Basar, the medical officer at the ARTC who has been working in the field of HIV for more than 10 years, spoke to me for more than two hours.
“HIV and AIDS are often used synonymously. This is wrong. HIV is a virus that can be suppressed with proper medication, and many people live a healthy life for many years without developing AIDS,” he said.
“When an HIV patient starts with the treatment, the medicine suppresses the virus’ replication, bringing down the viral load and boosting the CD4 count, meaning, the virus is kept in check and the immunity of the body is restored.
“I am not downplaying the dangers of the virus, but the virus can be successfully managed with regular and timely medication. When that happens, HIV reaches an undetectable level, and there is a high possibility of the virus not getting transmitted to others,” said Dr Basar.
He said the medical community now recognizes HIV as a “chronic manageable disease,” similar to how we classify other health conditions like diabetes, blood pressure, and such.
“Similar to how a diabetic patient has to take insulin regularly, an HIV patient will have to take ARVs to stay healthy,” Dr Basar said.
“I only take a single pill a day and I am good to go. Sometimes I am prescribed other tablets for side effects, which eventually subsides. My viral load is suppressed, and I have a healthy CD4 count,” says Annu.
Annu goes for consultations with the doctor sometimes, “and that is the only change that has happened in my life,” she says.
“Being positive does give you a different perspective, and I have made changes to live a healthy life. It is important to know your status. If you happen to be positive, there is completely no rush at all. Tell people when you feel ready. There are counsellors to help you through this. But most importantly, if you haven’t begun your medicine, please do so,” she advises.
Mr K says, “To anyone reading this, I want you to know that there is life after HIV. I have accepted that HIV is a part of me. I am proud that I can help educate someone whenever they come to me, wanting to know more about HIV. And I see that people will learn; they will understand if only we speak about it without any prejudice.
“I only wish and hope that everyone would look at HIV not as something demeaning, but would look through the virus and see the human and the possibility of life.” (Lijo is The Arunachal Times Media Scholarship-2018 winner under postgraduate category.)