Happy to discuss his status as co-infected with HIV and TB with strangers, the one thing that 18-year-old Vijayakumar wouldn’t risk was people he knew finding out.
When a close family friend, someone he referred to as ‘Uncle’ happened to walk past our meeting place, just as we were about to begin, and joined the conversation, we talked generally about Vijayakumar and his life, with whispered conversation taking place when the uncle was out of earshot as we walked. It was only as we sat in a half-built church in Virudhunagar District, away from the road, and after the elder man left, that Vijayakumar could open up.
While his uncle sat with us, Vijayakumar talked about his first year at the university, where he is studying for a B.A. in Tamil Literature, with hopes of taking the highly competitive Tamil Nadu Public Commission Service exam after graduation and getting a job with the state government. From a scheduled caste family, his father is a fruit seller, his mother a cattle herder. He and his elder brother and sister have aimed high. His elder brother is now a civil engineer and his sister is training to be a teacher.
They are also the only four people that know of his current TB positive status, aside from his Direct Observed Short Course Monitor and the Rainbow TB Forum members who assist him.
At the age of eight, Vijayakumar learnt that he was HIV-positive but for the next 10 years his CD4 count (a measure of the white blood cells in one’s body, which act as the immune system) was high enough so that he only needed pre-Anti-Retroviral Treatment (ART).
That changed in the beginning of 2016, and since January, he has moved on to taking proper ARTs.
January was also the month that he got his sputum test results back and learnt that he had TB, again. Back in 2007, he had faced the same problem: a TB-positive sputum test and the six-month treatment course. Nearly 10 years ago when his sputum test after treatment came back negative he thought that was it, he was classified as completed and cured.
His fight with TB should have been over, but when his father noticed him losing weight and having fever, he turned to patient-advocate Rajamuniyammal. Vijayakumar’s father was well aware of the risks of HIV/TB co-infection, being HIV+ himself. Knowing Rajamuniyammal and her involvement with health issues, Vijayakumar’s father asked for her advice. Rajamuniyammal came to Vijayakumar and helped him first to get his CD4 count checked and then to get tested for TB.
Neither test results were good.
Although the TB medicine makes him nauseous and dizzy, Vijayakumar makes every effort to hide his co-infected status from everyone around him, not an easy task, as he takes both ARTs and TB medication, which need to be taken at regular intervals. He also has to be very careful of his diet, ensuring that he gets enough of the right food to sustain himself through the treatment which consists of pills and injections while trying not to stand out.
The only place he doesn’t face stigma is the treatment centre. He is one of the lucky ones. He is treated at the primary health care centre for his injections and has a village health care nurse who provides him with pills. Rajamuniyammal calls to make sure he remembers that he is due for more before he runs out and also supports him emotionally. She visits every couple of weeks to make sure he is doing okay.
Vijayakumar knew the injections he was getting were for TB treatment, but when asked why he was receiving both injections and pills, he was unable to produce an answer. We asked if he had Multi-Drug Resistant TB, he didn’t know; he’d never asked. It seemed that stigma is so high that for some patients the word “tuberculosis” is enough, no more questions asked. Just take the drugs, wait for it to go away and try and return to a normal life.
Although, for Vijayakumar, he will never truly be able to step out of the shadows. Even when his fight against TB ends, for there will still be the burden of being HIV positive in an unforgiving/intolerant society. It is a matter of grave concern that awareness, even among patients of this disease that affects them is at scarily low levels. This is bound to affect the way they seek treatment and in turn on how we fight to eradicate it.
In our effort to get rid of this disease, let’s make sure there is as much awareness as there is spirit to fight it. For without either, we have an undefeatable enemy on our hands.