“At the age of 17 I came out to my parents as gay. After a year, while they were still coming to terms with this reality, at 18, I told them I was HIV-positive,” opened up Gautam Yadav, who was diagnosed as HIV positive in 2009. It’s been over 10 years, and today, Gautam has not only learnt to live with HIV but even conquered the stigma, fear, and discrimination that often comes with it. He is now a LGBTQ rights and HIV activist, helping others get over the stigma, shame and misinformation.
This is the first story in our series “Survivor Stories” where we will hear from people who’ve combatted or are living with different diseases or ailments.
Yadav is among the estimated 24 lakh people living with HIV (human immunodeficiency virus) in India. In 2021, Maharashtra, Andhra Pradesh, and Karnataka reported the maximum numbers, according to the India HIV Estimates 2021 report. The Union Health Ministry report also said the annual new infections in 2021 were estimated at around 63,000, a 46.3 percent decline since 2010.
Despite being open about his diagnosis for a while now, misinformation, myths and stigma around the disease plague many aspects of Gautam’s life. “People still react with caution,” says Gautam. Like many dealing with HIV, he feels marginalised and underrepresented. “We still don’t see any HIV-positive people in advertisements, movies or serials, right? It’s got a long way to go before it can be normalised,” he says.
For a deeper understanding of what Gautam and thousands of other HIV positive people deal with, OnlyMyHealth got in touch with Dr Souradipta Chandra. He is a Consultant Physician (Internal Medicine/Travel Medicine/Aeromedical Emergencies), Medical Director: First Assist, India and Sr. Consultant Physician at Helvetia Medical Center, New Delhi. His insights are under the “doctor speaks” section in relevant parts of this article.
Coming Out and Getting Tested Despite Zero Symptoms
At the age of 17, Gautam came out to his parents as a gay child. Subsequently, he found out about an organisation in Delhi, which was frequented by people from the LGBTQ community and decided to visit it.
“A counsellor there asked me about my sexual behaviour, partners, STIs and others. I was not aware of any. He gave me information and also suggested the HIV test, as I had multiple sexual partners at the time,” said Gautam. “I didn’t have any symptoms, and it took me about nine months to mentally prepare myself for the test. In 2009 I finally got tested and I came to know I was positive”
Doctor Speak: One should get tested every six months if they are sexually active and have multiple partners. Apart from that, it is advisable to get tested if there has been an incidence of unprotected exposure, preferable within a month of the exposure. It is also important to get tested three months after the first HIV test, as there is a window period during which the virus may not show up in the blood. The virus may remain in the human body without causing any symptoms for months; so yes, it is possible to have HIV and not know it. The commonest symptoms are fever, rashes, swollen lymph nodes, diarrhoea, nausea, fatigue, night sweats and flu-like symptoms.
For Gautam, his initial reactions were that of shock and fear, and the diagnosis even went on to affect his mental health adversely.
“It was very difficult. Multiple thoughts crossed my mind. I was only 18 and starting my life, so how would this disease affect my life? How long will I live? I am the only son, who will take care of my parents?,” he said, elaborating on his journey after finding out about his diagnosis.
Even though treatment options now have become greatly advanced, back in 2009, it had just started off in India.
“At that point, I was just 18 and the drugs they were starting, they had multiple side effects, so they needed my parents to know. Luckily my parents were supportive. They met the counsellors, cleared all their doubts and supported me through it all,” he added. Luckily for Gautam, he only faced some rashes in the initial phases, and not a lot of side effects after.
CDC recommends that everyone between the ages of 13 and 64 get tested for HIV at least once as part of routine health care. One should take extra care to get tested if they have had multiple sexual partners since the last test, has had unprotected sex, has gotten injected using a syringe or needle that was used before, or is a sex worker.
Even though different forms of tests exist, a blood sample is required for them all. The test costs an average of ₹300 - 500, varying depending on where you get it.
Medication and Life Expectancy
Medicine and treatment options have grown significantly over time, which ensures that being diagnosed as HIV-positive is not a life-threatening concept any more.
“What the medication does is it puts the virus on sleep mode. The virus doesn’t die within the body, but it dies on coming in contact with air. So medicines put it in sleep mode,” said Gautam. Earlier it used to be two pills per day for him, but right now he takes one pill every day, strictly at the designated time. “These medicines I need to take till my last breath.”
Doctor Speak: HIV is no longer a death sentence. As long as the patient takes his/her medications regularly (it's as simple as a single daily pill these days) and follows up with their doctor every 6 months, they can easily have a normal life span.
Myths, Stigma, and Shame
One of the most common observations for Gautam has been that people don’t understand the difference between bacterial and viral infections.
According to the CDC, HIV is a virus that attacks the body’s immune system. If HIV is not treated, it can lead to AIDS (acquired immunodeficiency syndrome). AIDS is the most severe stage of HIV infection. People with AIDS can have a high viral load and can easily transmit HIV to others. They have badly damaged immune systems and can get an increased number of opportunistic infections or other serious illnesses.
In short, HIV is a virus and AIDS is the condition it may cause. However, having HIV is not a definite sign of the person developing AIDS. With modern treatment and care, HIV-positive patients nowadays lead long, healthy, productive lives.
Also Read: Know The Difference Between HIV And AIDS
Since HIV is most commonly known to be a sexually transmitted disease, shame is a common feeling that shuns people from seeking tests, treatment or help. This comes as a result of a society where sex itself is shrouded in shame, and often, patients are made to feel like sex itself is the mistake that causes such things to happen.
There also exist prevailing misconceptions about how it spreads.
“People mix it up. People think that like TB spreads through sneezing and coughing, HIV is also the same. So people think sleeping in the same room or eating together can spread HIV,” he said.
Doctor Speak: It is absolutely safe to eat, drink, share utensils or common items with an HIV-positive patient. The only way the virus can be transmitted is by unprotected intercourse with a detectable positive individual, or from an infected pregnant mother to her child, or through infected blood transfusion.
When at a party his HIV status was divulged without his consent, he’d realised people were being cautious around him. Due to lack of awareness, there persists several myths in the minds of the common man.
Doctor Speak: Some of the most common myths around HIV are:
- HIV Positive people can't have children. Which is false - as it is possible for a positive mother to have a negative baby. It is also possible for women who are HIV negative to conceive with a male partner who is HIV positive, with the risk of transmission significantly lowered with proper medications.
- HIV always leads to AIDS. With proper treatment, the levels of HIV remains in control, and does not lead to AIDS, which is basically the destruction of the immune system by the virus.
- HIV is a gay disease. A myth, as the straight population is equally vulnerable and affected by the virus.
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“Right now, I am undetectable, so I am the safest person to have sex with,” says Gautam.
As published here in an explainer by the National Institute of Allergy and Infectious Diseases (NIAID), which has also been cited by the WHO, U=U refers to Undetectable = Untransmissable. It means that people who are HIV-positive, but achieve and maintain an undetectable viral load—the amount of HIV in the blood—by taking antiretroviral therapy (ART) daily as prescribed cannot sexually transmit the virus to others. U=U is also part of an international campaign around HIV, which aims to raise awareness about this aspect of HIV treatment.
Gautam shares that for undetectable patients, even having sex without a condom will not lead to transmission. Although, he adds, using a condom is important to prevent spreading STIs.
However, lack of awareness and stigma hinders Gautam from divulging this information early on. “If I’m meeting someone, it’s not always necessary to tell them, because often, people go into a panic mode. They even tell many others to ‘beware’,” he said.
Safety and health awareness isn’t a one-person responsibility, explains Gautam, and thus the responsibility of being safe doesn’t lie solely on him, just because he’s HIV-positive. “If two partners are meeting, it is both of their responsibilities equally, to maintain safe-sex precautions. I definitely use precautions,” he said.
Doctor speak: Firstly, patients should take their medications regularly as advised by their doctors. The medications ensure that the virus remains undetectable in the human body, and an undetectable HIV positive patient cannot transmit the virus even if there is any unprotected exposure. Skipping medications can make the virus detectable in their blood, as well as develop resistance to the medications. Secondly, irrespective of their undetectable status, it is advisable to use protection, unless their partner is on PreP or Pre-Exposure Prophylaxis, which is basically a daily antiviral pill to prevent the transmission of HIV.
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Doctors and Insensitivity
Gautam gave the analogy of Covid and how initially people were in a panic mode about it, but with more awareness, treatment and more, people aren’t paranoid anymore, but this social progress and development in attitude or mentality, hasn’t happened at a similar pace with regard to HIV.
“If you still go to some hospitals and doctors today, you’ll come across cases of discrimination. They talk nonsense with them. These are even more prevalent in rural areas. Doctors sometimes even shame people for having had sexual encounters, like they’ve done something wrong, which has led to HIV. Everyone needs to keep having positive conversations around the disease,” says Gautam.
Doctor Speak: There is a significant lack of awareness and unnecessary judgement by plenty of doctors. It is crucial to sensitise doctors and nurses right at the beginning of their medical courses. A majority of doctors are not even aware of the existence of PreP, PEP as well as the fact that HIV is not a death sentence. Specialists in the field too would require the occasional sensitization course on how to be more empathetic and aware. Unless we talk about it and include it in our courses - I don't see a significant improvement. Not just among the medical fraternity, but among the population in general. Have you seen any billboards or advertisements promoting the use of PreP or PEP, or promoting regular testing? Neither are there enough support systems, organisations or clinics to handle the situation properly.
Being out and loud about his life and experience provides a sense of community and safety to many who seek it today. Several even flood Gautam’s DMs asking for myths to be cleared, seeking a sense of community, and they usually conclude with a newfound sense of hope.
“There even people with suicidal tendencies who’ve come to me and after talking to me, felt that there can be a healthy life after HIV diagnosis too,” he said.
Doctor Speak: There's still no cure for HIV unfortunately, but then again there's still no cure for the common cold either. That doesn't mean one has to die from it. Once diagnosed, a patient is to get in touch with their GP or a specialist in Internal Medicine/Infectious Diseases. The doctor will examine the patient and do a series of blood tests, based on which a combination of antiviral medications are started. It is as simple as one pill a day, to be taken daily for life. A check-up every six months is crucial. After which the patient may have a completely normal life span.
If you are looking for more resources or help about HIV, contact this helpline short code toll-free number 1097, run by the National AIDS Control Organisation.