39 years old Sukhram Yadav hails from Azamgarh, a backward district of east Uttar Pradesh. Although he works in a flour mill in Mumbai, his family, consisting of his wife, his parents and two daughters aged 14 and 12 years, lives in his native place. He has been on anti retroviral therapy (ART) since 2001 and was referred to MSF in 2006 with drug resistant TB (DR-TB), where he has since been successfully treated. Recently he spoke to Medicins Sans Frontiere (MSF) about his life during and after his tryst with the bacteria-virus co-infection.
Sukhram’s tale of woe began with a dry cough in 1993. When a month long treatment from a private doctor did not help, he was directed to a Municipal Hospital in Mumbai. A sputum test confirmed pulmonary TB. So he completed a 6 month course of treatment under a private doctor, and was thereafter permitted to return to his village. Thinking that he had been cured of TB he did not get tested again and neither did the doctor advise him to do so.
In 2000 he again fell ill. There was cough and very high fever, accompanied with weight loss and poor appetite. He would get severe headaches and began to lose his hair. His condition deteriorated slowly and he developed glands all over his body. So he went back to the same Municipal Hospital, where he was once again diagnosed with TB. This time he was referred to a DOTS centre, where he again completed a 6 months ATT regimen. But as his glands did not subside he was sent to Hinduja Hospital where the doctor told him that those were tubercular glands and would not be cured without eating medicines. He was nonplussed. He told the doctor that he had already been on medication for a very long time. So he was sent to KEM ART Centre where he was diagnosed with HIV, and put on first line anti retroviral therapy (ART) in 2001. They started TB medication also.
Gradually all his glands disappeared and he became better. So he stopped taking the medicines. After sometime his CD4 count dropped to 20. The doctors at KEM said that as he had discontinued treatment in between, the medicines were not being effective, and he now needed second line medicines which were not available in that hospital and he needed to buy them from the private market. He could not afford to buy the costly medicines from his own pocket. So he ran from pillar to post and finally managed to reach an NGO called Prafulla Trust, who sent him to J J Hospital, from where he was eventually directed to MSF.
When he came to MSF in March2006, his CD4 count was 20. He was put on first line treatment for 6 months which could increase his CD4 count to only about 75-76. So the doctors put him on second line ART treatment. He remembers clearly that, “I ate that medicine for two days, and from the third day I started coughing and vomiting. Sometimes I would vomit blood. I started getting fever. I could not eat anything.
When I was tested, it was TB. So they asked me to eat the TB medicines till the culture report confirmed the nature of my TB. The report, which came 8 weeks later, confirmed that I had MDR TB. I was very sick then. In these two months my condition had deteriorated. The coughing kept on getting more severe and I could not even walk. But I kept on eating the HIV medicines. I started eating medicines for MDR TB in December 2006 only.”
Sukhram shudders to think of those days—“When treatment began in 2006 then the pill burden was too much. I would get scared at the number of pills I had to eat. I had to take around 8 pills for HIV along with several others for DR-TB-- I had to take 27-28 pills per day. These medicines had severe side effects. I suffered from diarrhoea, vomiting, giddiness, and extreme weakness, as if I will never be able to walk again. It seemed the medicines were affecting my brain too as I was becoming forgetful. My body was dotted with the injection pricks which I had to take for seven and a half months. For two months I survived only on liquid food like lentils. I did not eat any solid food as my body could not retain anything. I would vomit out anything which I ate—even water. I was in real trouble. But somehow I continued with the medication, without skipping a single dose. Even a default of one pill would have created problems.”
Sukhram was pleasantly surprised to feel a drastic improvement in his condition after 3 months of medication and by the end of his 8 months treatment at MSF he had once again become robust and healthy and forgotten what it was to have had TB.
He still does not understand as to why TB had recurred a third time, despite having taken treatment twice. But he was told at MSF that he had probably defaulted in his previous treatments and taken medicines here and there, which is why TB had recurred in a worse form. Sukhram admits that, “Perhaps I had left eating HIV pills, which is why I got TB again. I had indeed skipped my pills several times--once for 6 months I left the pills, which I had got from Madras. I think that this increased the viral load and decreased CD4 count in my body, and due to weakness it slowly changed its form and looked like TB.”
But why did he get TB at all in the first place? He blames it on his occupation-- “I work in a flour mill. It is very dirty work. There is so much of flour flying all over the place that we look like white ghosts. The flour particles get into our lungs. So, very often people working in these mills become patients of asthma and TB after 55-56 years of age. So TB is an occupational hazard for us.”
He laments that, “Only if I could get some other work, I would leave this job and go back to my village. But now I cannot learn a new trade. I earn a living from the mill to bring up my family. I am not educated enough to get any other job. So I am stuck here, as I have to take my medicines regularly now. There is no chance of my going back to my village.”
Although Sukhram wants to help people living with HIV/TB, he is still not comfortable with revealing his HIV positive status to others. He wants to spread more awareness about the disease, but gets inhibited when people start asking as to how he knows so much about the disease. He has guided a few persons from his village to Banaras Medical College for treatment of HIV, but feels sad that some of his acquaintances in the village died of HIV, for want of regular and proper treatment.
But he is all praises for MSF. He says–“MSF has given me a new lease of life. When I came here the counsellors and doctors at MSF gave me complete information about HIV, about TB, about the importance of eating medicines regularly, about how does one contract HIV. In government hospitals, it was so difficult to approach the doctors. They would not even touch me; they would just write the prescription and ask to buy the medicines from outside. They would treat us so badly and inhumanly. If I had not come here everything would have been over for me by now and I would have died long ago. Before I came here, all my earnings went in buying medicines. I became a pauper. I used to wonder from where I will get money to buy more medicines. MSF has given me a new beginning.”
Sukhram has since been cured of DR-TB. His immediate concern now is his daughters’ education. Though not educated himself, he feels that “Education is very important in today’s world”. He is proud of the fact that his daughters are studying in English medium schools, and that the elder one is quite intelligent and is studying from the Science side. He wishes to be able to fund their education and marriage.
(The author is the Managing Editor of Citizen News Service (CNS). She is a J2J Fellow of National Press Foundation (NPF) USA. She has worked earlier with State Planning Institute, UP and taught physics at India's prestigious Loreto Convent. She also co-authored a book (translated in three languages) "Voices from the field on childhood pneumonia" and a report on Hepatitis C and HIV treatment access issues in 2011. Email: firstname.lastname@example.org, website: http://www.citizen-news.org)
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