Shanti is a 38 year old semi-literate woman of slender means living in Mumbai. She has been living with HIV since the last 5 years and had developed multidrug-resistant tuberculosis (MDR-TB). Her story is the story of the common person on the street for whom each day’s survival is an ordeal, even when there is no illness. Taking treatment for the double burden of HIV-TB co-infection makes it like the last straw on the camel’s back. Shanti recently spoke about her trials and tribulations to Medicins Sans Frontieres (MSF) — in whose care she was brought for treatment of MDR-TB around 4 months ago.
Hers is a beautiful life gone ugly. Her first husband died of AIDS in 1991, and her only daughter passed away a few years ago. She reminiscences about her past, and rues about her present: “I was born and bred in Mumbai. My childhood days were really good. I loved playing on the beach and clicking photographs. Later, after I got married, I used to come here (Chaupatty Beach) often with my daughter and my husband and enjoyed being in the water. But now I do not go out anywhere to travel and visit places. I am so tired and sick all the time. I am not even able to celebrate any of the festivals. My life has become hell as it now revolves around medicines only. I wish those good old days would return!”
Her tale of woes began in 2006 when she became very sick with diarrhea, recurring bouts of fever and vomiting. She took treatment from private doctors. At that time she was working along with her husband. But all the money would be spent on her illness. She remembers that, “I would remain okay for a month, and then the problems would start again. I even got tested for HIV in the private sector. I paid Rs 400 (USD 8-10) for the test but was told that it was negative. But later my HIV status was confirmed and in 2007 I was put on antiretroviral therapy (ART) in JJ Hospital.”
However, getting diagnosed, and treated for her sickness of drug-resistant TB, proved to be a far more formidable task. Three times the sputum test she gave at the municipal hospital in Marine Lines came back with a negative result for TB. Yet, even without proper confirmation of her illness, she was put on a TB treatment course for six months. She had to take 24 injections as well as pills on alternate days. But her health did not improve and two months after completing the treatment she went back to the same hospital and on the basis of the results of an X-Ray (which she got privately done, outside the hospital) she was given another eight month treatment course.
But she did not get any better even after this, and continued to suffer from weakness, loss of appetite and a very bad cough. But she was refused medication by a doctor who told her that he could not put her on a third course of antibiotics, else her kidneys would get damaged. “I was already on ART then at JJ Hospital. But the treatment was not working effectively. My health and appetite was not improving. I told the doctor there that I had taken two courses of anti-TB medicines. Then I was made to fill a form and sent to the hospital in GT. There again I completed a 6 months course of tablets plus injections for TB.”
Finally in 2007 doctors at JJ Hospital diagnosed her of having drug resistant TB (DR-TB), but told her that it would not be possible for her to afford the costly treatment. A social worker at the hospital told a distraught Shanti that, “There is no cure for it. Its treatment is very expensive. From where will you get lakhs of rupees? So you should eat proper diet and continue with ART lifelong. If you discontinue ART you will die.”
Shanti was very disconsolate. She had already undergone the full course of TB treatment thrice - two 6 months regimens and one 8 months regimen over a period of time, but, instead of improving, each time her situation had worsened. Luckily, a contact put her in touch with someone who arranged an appointment for her with MSF in November 2011, where finally she was put on the correct treatment for her illness. She is now she is in her fourth month of treatment for drug-resistant TB with MSF. But as she is also infected with HIV (and on ART since 2007), the number of pills she has to take each day is very high. She says, “My pill burden is very high. I have to eat too many medicines for TB alone— 6 tablets in the morning and 8 tablets at night. In addition I have to take antiretroviral medicines also. Sometimes I vomit out a few tablets — so I have to take some medicines to prevent vomiting. I have to get injections too. If pill burden is reduced it would be a great relief. It seems that medicines have become my food now. There are more medicines in my stomach than food. The doctor says that when my weight will increase, the amount of medicines will decrease. But as of now my weight is not increasing. I have been advised to take fruits and milk, but my stomach is not able to digest milk and curd. Life at the moment is bad.”
The side effects of all these medications are very difficult to cope with. She rues that, “I am not able to eat properly. I vomit all the time and feel drowsy the whole day long - as if I am drugged. My mind does not seem to work, I feel very distressed. There is too much of palpitation all the time. It seems as if I would die. I feel giddy after taking my medicine, and also feel unbearably hot.”
Her living conditions are also inadequate. Over the years, she has spent most of her earnings on tests and medicines. After the death of her first husband she has been living with one of his friends, whose love and care are her only hope. Her alcoholic brother and old mother (living with diabetes) also live with her in very poor conditions. Shanti complains that, “I do not even have a proper place to live in. My house is very small and in a very poor condition. I have no electricity connection. There is no fan, so it becomes very hot. I feel very hot when I eat the medicines. There is too much of sun, and there is problem of bathing also. I need a place where I could sleep under a fan and rest after eating my pills.”
Her eyes brim with joy and her face shines with the love of her caring partner. He has been her only anchor in the stormy path of her life. In her words, “My husband always gives me hope. He is my source of courage I am alive because of him only. I got married to him after the death of my first husband. I have so many ailments, but instead of leaving me to my fate, he takes very good care of me. He even washes my clothes and helps me to take a bath. If it were not for him, I would have left the treatment long ago. It is his courage and faith that keeps me going. I had lost all hopes of living. I just wanted to die. I did not want to take any medicines or injections. But I swallow the medicines for the sake of the love of my husband, who says – ‘if you die I too will leave this world’.”
Shanti has been lucky to have a very supportive partner, and luckier to have come under the care of MSF, (through the efforts of one Sharmila Madam and Roma Madam), where she is now receiving free treatment for DR-TB. This is like a silver lining in her otherwise bleak existence. But thousands others are not that fortunate. They often fall prey to misdiagnosis by unqualified doctors in the early stages of the disease. Even when the treatment begins, it may not be completed due to a host of reasons — expensive treatment, pill burden, adherence issues, toxic side effects of medicines, and above all, a total lack of knowledge and awareness about the disease. So they simply languish in miserable situations, just waiting for death to end their tribulations. It would be a great day indeed when a loving and caring treatment is accessible to all those in need of it, irrespective of their social and economic status. (CNS)
(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 authored ‘Saving Children from TB’ (2012), 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: email@example.com, website: http://www.citizen-news.org)