AAG, AmritsarAIDS Awareness Group, Amritsar

AAG, AmritsarAIDS Awareness Group, Amritsar
Visit to A HIV victim's Family
Here is an account by a researcher from US now a days with us about her visit to a HIVer's family including a HIV born growing boy
My main objective in Tarn Taarn was to visit the home of an HIV patient, B. Singh. I first met this gentleman in the clinic. He is a farmer and lives in a village right outside of the city of Tarn Taarn. He mostly grows rice and vegetables.
His wife contracted HIV/AIDS during her pregnancy from a blood transfusion and subsequently, in her undetected stage, passed the virus on to her son. She gave birth to another son a few years later, but her second son luckily remained free of the virus, by virtue of nature. Eight years later she suddenly became very sick. A month before her death, she was diagnosed with HIV/AIDS. Her husband, the gentleman who I visited today, then got himself tested and found out he was positive. At first, he was worried that his death was imminent. He shared his HIV status with his best friend, who was suffering from a terminal illness. His friend instructed him to immediately share his diagnosis with his family. B. Singh gathered as much information as he could, getting studies and texts translated from American scientific journals to Punjabi, to be fully equipped to deal with the virus. He has been seeing Dr. Bharti for a few years and has been successful on his antiretroviral treatment. His son is also healthy, though I noticed a stark difference in the level of shyness between him and his younger, HIV negative brother. I asked the older brother if he plays any sports at school and his father replied that he plays cricket and football. The son himself was too shy to talk to me directly, though he did sneak a few smiles my way.
When I first arrived at B. Singh’s house, they offered me a glass of coke. It was hot so I happily accepted. Because it was my first visit to a patient’s home, I was nervous about what questions I should and should not ask him and his family and I became lost in thought for a few minutes, holding my glass of coke until B. Singh had gathered his entire family. After a few minutes, I noticed that B. Singh’s brother kept looking at my glass and wasn’t sipping his cup of coke also. The thought struck me that perhaps his brother was thinking that I wasn’t drinking the soda because B. Singh also would have one time used the glass. I immediately took a sip of the soda, and his brother followed in action. One of the first comments B. Singh made once his whole family was gathered was to point out to his family, especially the sister-in-law who knows his diagnosis, that they will be ok if they use the same utensils, plates, and cups as he uses. When I asked B. Singh if he had any problems disclosing his HIV status to his family, he said no, his family was completely understanding. But after noticing the slight tension in his family, I felt that though some members of his family are open and accept what B. Singh tells them he learns from his doctors, there is still apprehension on the part of some members of his internal family. The stigma that HIV patients such as B. Singh have to deal with does not go away with simply explaining the facts. It takes conviction and faith in the message to fully deal with the superstitions and fears which predominate society.
I asked B. Singh if he knows any others in the village who are HIV positive. He said yes, but he does not disclose to them his status. Rather, in some indirect method tells them that he has a friend of a friend of a friend who goes to Amritsar to see Dr. Bharti and is taking medicine and is doing just fine. It is through this by-word-of-mouth relay system that many patients come into contact with the HIV physicians in Amritsar. I attribute this to a lack of faith in the medical establishment, because there is a wide continuum in quality and standards of care and because patient trust is largely developed from personal experience. But most significantly, as B. Singh told me, patients do not go to get treatment because they do not know that medical treatment exists. The amount of awareness about HIV, especially in villages, is weak and largely limited to feeding a culture of fear about the disease. Quite surprisingly, even though every village has qualified health workers working within its parameters, even many of them do not know that there is life-sustaining medicine available for HIV positive people.
Another significant hurdle to care exists in medical quacks. While alternative systems of medicine (alternatives to allopathic medicine) are regularly practice in India, such as homeopathic medicine and ayurvedic medicine, these medical systems have not developed adequate treatments for HIV/AIDS. Moreover, in many villages illicit quackery thrives on people’s faith and superstitions in the form of soothsayers and potion-makers. In the case of HIV, patients who fall into the trap of taking treatment from these medical quacks end up wasting their financial resources and end up delaying or not receiving necessary allopathic medical treatment. I asked B. Singh if he had taken any "desi dwaiyaa" from a quack and he said yes, before he had gone to the doctors in Amritsar, he had seen an ad in the newspaper from a person in Kerala in southern India who claimed to have a cure to HIV. He paid the 11,000 Rupees (a massive investment!) and had the medicine couriered to his home. After a few weeks he realized the medicines were not improving his condition and he decided to pursue the physicians in Amritsar. I have heard of other patients in the clinic who have also fallen prey to this Kerala medical scam and unfortunately patients throughout India are falling prey to this get-rich-quick scam.
Before I left, I asked B. Singh what he thinks about his future. He said he has thought about getting re-married but he knows he has to marry a woman who is HIV positive also. Then I asked him what he thinks about his older son’s future. He became pensive for a moment, and then replied, "We are just handling this day-by-day, making sure he grows strong. But yes, I have thought about his marriage. In five or six years, we will find a HIV positive girl for him. It will be hard, but I will do it." As I was leaving B. Singh’s home, I waved goodbye to his son and thought about his life story. His birth was defined by HIV, his childhood has been defined by HIV, and his marriage, a rite of passage dear to the heart of many South Asians, will also be defined by HIV. HIV has the potential to alter a patient’s life course more than most diseases. In a village off the beaten path to Tarn Taarn, HIV is taking a large role in shaping the lives within a small village home.
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