AAG, AmritsarAIDS Awareness Group, Amritsar
Read this which is a quote from an intern working with us these days.She is PK from USA.
Amritsar's Positive People Network
June 11,2006-This afternoon I had the privilege of sitting in on the very first meeting of the Amritsar Positive People’s Network. Dr. Bharti and his colleagues are organizing their patients so that the positive patients can have some leverage and negotiate lower drug prices and other medical necessities for themselves. This organization will also create a centralized location and resource for HIV issues in Amritsar and will allow for greater networking with other national and international HIV/AIDS NGO’s.
The meeting was small but reflected a hodgepodge of society. The future president of the newly formed organization is a nurse in a local hospital. The secretary is a teacher. The treasurer is a farmer. Some of them have disclosed to their family, neighbors, and workplace their HIV status and some have not. One of the members today, after four years of seeing Dr. Bharti for his healthcare, disclosed his real name to his doctor, but only because as signatories to the Positive People’s Network he needed to submit official paperwork which would have disclosed his real name. While watching him disclose his real identity to his physician, I felt like the patient felt a sense of liberation, that he finally could be known by his own name. But I understand why he had hid his identity for so long. The stigma is so intense, that one can’t know who to trust.This leads me to the story of one of the patients who came in this morning for a checkup. I’ll identify him as R. Singh. (Singh is another ubiquitous last name in this part of the world.) His wife had tested positive for HIV a few months ago and started taking anti-retrovirals under Dr. B’s care. She succumbed to an opportunistic infection of cryptococcal meningitis in March. Before she had passed, her husband and family had mentally tortured her about her disease and she had to resort back to her own mother and father in her last days. She passed away on March 6, 2006.
From hearing the stories of the few women who I’ve met so far, it appears that they often are blamed for bringing the disease into the family unit, even though more than likely it comes from the man’s own extra-marital exploits, as men have a lot more freedom of movement in South Asian society.
After R. Singh had gathered his medicines and had his blood taken for a T-Cell Count, his father came into the room alone to ask the doctor if his son could get married. Dr. B explained to him that if he were to get re-married, he could only get married to a woman who is also HIV positive. Dr. B framed the issue as a question of the problems that would develop if his new wife were to become infected, rather than an issue of keeping the infection from spreading. I thought it was a proper response, as one of the issues that Positive People face is that society loses confidence on Positive People’s right to lead a normal life. So perhaps, one day, if R. Singh finds the right person, he should get re-married and have a spouse to help him raise his 4 year old son. But Dr. B did let R. Singh’s father know that if he is to get married, it could only be with someone who is HIV positive, or to whom he has disclosed his positive status and would be willing to be in a marriage of abstinence. He also said that though it may take some compromise on things that traditionally many Punjabi’s look at when making marital alliances, such as caste or class, people who are HIV positive do get married and do live normal lives.
It was encouraging to see the hope that many of the Positive People who came to the clinic today felt about themselves and their health. It has been eye opening to meet these patients and to see their assurance in themselves and their future. HIV does not mean death. HIV also means life.
# posted by pk : 6:39 AM 3 comments
Saturday, June 10, 2006
Day 1 In The Clinic
This morning I sat in with Dr. Bharti, the local physician known for treating HIV/AIDS throughout the area. In 1993 he identified the first HIV case in the Amritsar district and he has been steadily seeing a large number of patients since then. Although I have exchanged emails and talked with Dr. Bharti via phone, today was the first time I met him and I was struck most by how gently and with understated empathy he dealt with his patients. Because HIV/AIDS is more than just a physical disease but also reflects the pathologies of society, empathy and understanding are central aspects in developing the trust of these patients who face daily betrayals by society because of the stigma of their HIV status. I hope in the next few weeks I can pick up some lessons from Dr. Bharti on how to become a physician with whom patients can feel comfortable and open.The first woman who came in this morning looked just like my grandmother. She was rugged, looked like any other elderly Punjabi Sikh woman, wore a chunni (scarf) on her head and was draped in a kirpan. Dr. Bharti referred to her as MataJi, because of her age. She had journeyed from her village to pick up treatment for her husband, who is HIV positive. He had been a sevadaar for the Shiromani Gurdwara Parbandak Committee and they have been married for more than 40 years. He was first diagnosed in 2001 after developing TB and hepatitis concurrently but was infuriated at learning the diagnosis and did not believe that the doctors were right because “he had done nothing wrong”, as she put it. Only a few months ago, after developing a case of herpes zoster and having his T cell count down to a reported 70, did her husband accept that he might be HIV positive. He is a drug addict and most likely picked up the disease through dirty needles. Drug addiction is rampant in Punjab. This past week Guru Nanak Dev University issued a report that roughly 75% of the youth in Punjab between the ages of 16-35 are addicted to drugs, primarily in the rural areas. [LINK] I assume the rates are less overwhelming amongst the elderly, but this gentleman’s case reveals that drug addiction exists in all strata of Punjab’s society. His wife had made the long trek from her village to pick up 10 days of medicine for her husband. She was most concerned about whether these medicines would help him. She explained how he was deathly thin, had ongoing diarrhea, and that his care was all-consuming. She appeared very distressed as she explained her husband’s situation and the enormous toll his disease was taking on her finances. The anti-retroviral drugs that she came to pick up cost roughly 500 Rupees. If he does not take these drugs, he has certain death. If he takes these drugs continually, he can potentially live a normal life. To compound the situation, this gentleman must also take other medicines to control the opportunistic diseases he’s picked up. For most rural people in Punjab, these medications create an enormous financial toll. I sensed from the gentleman’s wife that she felt if there was no hope for him, she did not want to expend all of their financial resources. Her concern is normal for anyone having to juggle the burdens of hopelessness and limited resources.Before she left, she explained that she had also developed a case of herpes zoster recently. Dr. B immediately took this as an opportunity to encourage her also to get tested. He asked her when they had their last sexual contact and she answered six months ago. This was a delicate situation I have been curious about for awhile. How does one ask a woman, especially a traditional and uneducated woman, about sex in a culture where sex is a complete taboo topic? Dr. B. explained to me that in India even physicians of the opposite sex shun from being direct with their patients when it comes to topics of sex, so it was very amazing to see how openly he asked her “qusI Awps ivC kdo imly sI?” and to watch her very openly answer. I hope that she does follow up on getting herself tested and that she hasn’t been infected.The next patient who came in was a beautiful 25 year young woman S. Kaur. (Kaur is as common a last name here in Punjab as Smith, so I feel comfortable using her last name without breaching her confidentiality.) I couldn’t believe this young woman was infected because she appeared to be healthy and thriving. Her father had accompanied her from their village and he explained how just a few months ago she had been just bones and they had to carry her like a baby from place to place. He was so grateful to the doctor for his help in getting his daughter well. S. Kaur’s story is another typical story. Her husband is a truck-driver and most likely picked up the infection through extra-marital sexual contact during his trucking route. He is in complete denial that he has HIV and when S. Kaur started to become sick and her tests came out to be positive, he left her, even though they have a five year old child together. He offers no financial help to S. Kaur and her father and mother completely support her, even though they themselves have very little to offer. Her father explained how he asks his brothers and sisters for money to cover the costs of the S.’s anti-retrovirals. Dr. Bharti tried to investigate S.’s skills and encouraged her to find some sort of way to support herself, because HIV/AIDS is a lifetime disease and she will need to find a way so that she can continue to afford her medication. Dr. B. asked her if she would be interested in joining a newly formed Positive People’s NGO in Amritsar, but cautioned her that people might ask her if she also has HIV if she were to work for this NGO. She said she did not have the courage to say that she has HIV, despite the financial incentive. Dr. B also explored the possibility of her selling him a sheet that she embroidered and then he selling it for profit as a charity item made by an HIV positive person to support her medication fees. S. embroiders sheets for export and receives about 120 Rupees a sheet for 10 days of labor, so to support her 1000 Rupee a month medication cost, she needs much more than what she’s currently able to procure. S. appeared hopeful as she left and I had a feeling that she will take initiative to follow one of Dr. B’s suggestions on how to handle the finances of her infection.I saw three other HIV patients this morning with Dr. Bharti, but I’ll leave you with the MataJi’s and S. Kaur’s stories, because to me, they are an excellent intro into the affects of HIV/AIDS on the lives of the families of Punjab.
# posted by pk : 6:35 AM 1 comments
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