This post was contributed by Vivek Dharmaraj of Advocacy to Control TB Internationally (ACTION Project) based in Pune, India. The names have been changed for privacy.
Mohini Bai came to our NGO about 8 years back. She had lost her husband to AIDS and both she and her younger son had also tested positive for HIV. When we asked her to get her elder daughter tested, she kept putting it off as she was really scared that the girl may test positive as well. Finally one morning she brought in her daughter for testing. The girl was in the 4th or 5th standard at the time. We were all relieved when the girl’s test came back negative for HIV.
When Mohini Bai heard the report, she broke down. She said if the test had come back positive, “I planned to go home and mix poison in our food and all of us would die together. I lost my husband and I can’t think of losing anyone else. However now I know that my daughter is healthy and as her mother I should see that she gets to lead a normal life”.
A strong woman, she was determined to see that her children receive a good education. Poverty, starvation, HIV, widowhood…these were all the challenges that life had thrown her way and yet she wasn’t giving up. With some help from our NGO, a few issues were addressed. She was able to get sponsorship for her children’s education and nutrition support for them. Mohini Bai also started working and thus was able to make ends meet.
As is inevitable when HIV positive, Mohini Bai contracted tuberculosis a few years back. She accessed care under the government’s RNTC program and completed her treatment under the DOTS program. Later, she was started on highly active anti-retro-viral treatment at a government centre.
About a year back, she came back to our NGO with fever and cough. She was once again diagnosed with tuberculosis. This time when she started treatment at the DOTS centre, she was initiated on Category 2 regimen under the DOTS program.
Barely a few months after completing the course, she returned to us complaining of fever and a cough and had also been losing a lot of weight. When sent for a microscopy examination, her sputum tested positive for tuberculosis. Once again she was referred to the DOTS program where Category II was re-started.
However, Mohini Bai was not doing well and when we saw her a month ago, we enquired about her health. She reported that she was taking her tuberculosis treatment but she was still feeling very weak. When she came back to meet us about a week back, we decided to do a sputum culture and sensitivity test for TB. At our lab, her sputum showed 3+, indicating that she still had tuberculosis.
We then sent the sputum for the culture and sensitivity test to an NABL recognized laboratory. The report took about 3 to 4 days and clearly showed that Mohini Bai was resistant to the first line anti tuberculosis treatment that she was taking. We asked the DOTS officials about 2nd line ATT for her and we were told that DOTS + was not available.
That is when we contacted a TB advocate known to us. He made some calls to senior government officials, worked out a possible solution and put us in touch with the relevant persons. Eventually we got directed to a TB sanatorium where we were told there was a possibility getting second line of TB drugs for Mohini Bai. We were relieved when the sanatorium doctors agreed to admit her.
However, when our social worker visited, he was told that the sputum tests had to be redone; they could only accept the reports from National TB centers. Mohini Bai, however, was quite breathless and she could not bring out the sputum. Within 2 days her condition worsened and Mohini Bai passed away Friday morning (30th Sep 2010).
Maybe her death is just one among many that occur on a daily basis. Maybe our population is too large and these things cannot be avoided. Maybe deaths in our country reduce the population burden. Maybe our country does not have the money to consider treating all MDR Tuberculosis cases – even in a metro city like the one where Mohini Bai lived in. Maybe by not acknowledging that there is so much drug resistant TB in the country, our government is actually trying to avoid international scrutiny. Whatever the reason, two children have been orphaned.
It has been said that the death of one man is a tragedy; the death of millions a statistic. It seems true – confronted by millions of tuberculosis deaths, they have become a statistic. As a doctor, an advocate and a person if I can’t be moved by the one death in my circle of influence, how much less will I be moved by the millions I don’t know. But I do care and so I write this story. Maybe it will prevent some other children from becoming orphans and maybe it will move you to do something.