Journey of a TB survivor from pain to strength
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Shobha Shukla, Kalpana Acharya
Contd from previous issue
It became all the more difficult for me to go through these side effects of TB treatment as at that time I was living all by myself in a hostel - far away from my family and parents. My studies suffered as I could not go to the college for over a month. My mental health also got negatively affected as I was mortified of people finding out of me having TB.
My parents too asked me not to share about my disease with anyone, but rather say that it was ‘chest infection’ to skirt TB stigma. TB stigma was so severe that I started having self-doubts. I had not even shared about my TB treatment with my friends. It be- came more traumatizing as I had no one to share with of what I was going through.”
After a month of fighting it all alone, Binika left the hostel and moved with in her parents.
Family support made it more bearable. “As time passed by, my parents suggested that I drop out of college because I was so unwell. It was a struggle to walk properly even for a minute. Climbing a staircase became a herculean task. But I persisted. I had worked very hard in my life to get into college, so I was very reluctant to drop out of it. I kept on coping somehow, not only with the physical side effects of TB treatment, but also with TB stigma, which lurked around me menacingly for quite a long time.”
She became TB negative but positively resolute to end TB
Binika could eventually see the light at the end of the tunnel when her six-months long TB treatment got over and she was declared TB negative.
“After I completed my Bachelor of Public Health degree, see the turn of fate-my first job was of becoming a District Programme Officer for TB - the same disease which had almost made me dropout of college and thwart my efforts to live my dream! This is my life story for now–my journey from pain to strength.”
Find all TB early and accurately and link to continuum of care
As per the latest Global TB Report of the World Health Organization (WHO), only about half of the estimated TB patients in Nepal are notified every year: out of 70,000 cases every year, 37,000 are notified. Of those notified every year, only half of them get diagnosed using a WHO recommended molecular test.
When a person with presumptive TB is offered a TB test, it should be a WHO recommended molecular test upfront. WHO has called upon all the Governments to 100% replace microscopy (which badly underperforms in diagnosing TB) with molecular test by 2027. At the 2023 UN General Assembly High Level Meeting on TB, the world leaders had reechoed their promise to do so by 2027.
But progress is appallingly slow with only 47% of TB patients worldwide getting diagnosed using a molecular test (and the rest are still diagnosed using microscopy).
Binika agrees: Early and accurate TB diagnosis is not only a critical gateway to TB care pathway, but also a public health and human rights imperative. It helps stop the spread of TB infection as well as reduces unnecessary human suffering and risk of untimely deaths due to TB.
Bringing “lab to the people” (and not people to the lab) is the first vital step towards finding all TB. If we fail to do this, we will keep missing TB cases despite having the best of tools in the labs.
If problem is at the grassroots, then why are programmes not rooted there?
“Community engagement and awareness is a critical cog-in-the-wheel to find all TB, treat all TB and prevent all TB. If the problem is in the grassroots, then the programmes should also be at the grassroots. If the problem is in the community, then the programmes should also be in the communities. We have to detect TB early and accurately,” asserts Binika.
Bringing the laboratory services closer to the community, especially in coun- tries with centralized health-care services like Nepal can be a big game changer in the context of finding TB early and linking with care, said Binika.
The WHO recommended point-of-care and decentralized molecular test (True- nat) can increase accessibility of TB testing for people who would otherwise either get missed or diagnosed late. Molecular tests not only accurately tell if a person has TB but also confirm if a person is resistant to most powerful anti- TB drugs, like rifampicin.
(To be contd)
Contd from previous issue
It became all the more difficult for me to go through these side effects of TB treatment as at that time I was living all by myself in a hostel - far away from my family and parents. My studies suffered as I could not go to the college for over a month. My mental health also got negatively affected as I was mortified of people finding out of me having TB.
My parents too asked me not to share about my disease with anyone, but rather say that it was ‘chest infection’ to skirt TB stigma. TB stigma was so severe that I started having self-doubts. I had not even shared about my TB treatment with my friends. It be- came more traumatizing as I had no one to share with of what I was going through.”
After a month of fighting it all alone, Binika left the hostel and moved with in her parents.
Family support made it more bearable. “As time passed by, my parents suggested that I drop out of college because I was so unwell. It was a struggle to walk properly even for a minute. Climbing a staircase became a herculean task. But I persisted. I had worked very hard in my life to get into college, so I was very reluctant to drop out of it. I kept on coping somehow, not only with the physical side effects of TB treatment, but also with TB stigma, which lurked around me menacingly for quite a long time.”
She became TB negative but positively resolute to end TB
Binika could eventually see the light at the end of the tunnel when her six-months long TB treatment got over and she was declared TB negative.
“After I completed my Bachelor of Public Health degree, see the turn of fate-my first job was of becoming a District Programme Officer for TB - the same disease which had almost made me dropout of college and thwart my efforts to live my dream! This is my life story for now–my journey from pain to strength.”
Find all TB early and accurately and link to continuum of care
As per the latest Global TB Report of the World Health Organization (WHO), only about half of the estimated TB patients in Nepal are notified every year: out of 70,000 cases every year, 37,000 are notified. Of those notified every year, only half of them get diagnosed using a WHO recommended molecular test.
When a person with presumptive TB is offered a TB test, it should be a WHO recommended molecular test upfront. WHO has called upon all the Governments to 100% replace microscopy (which badly underperforms in diagnosing TB) with molecular test by 2027. At the 2023 UN General Assembly High Level Meeting on TB, the world leaders had reechoed their promise to do so by 2027.
But progress is appallingly slow with only 47% of TB patients worldwide getting diagnosed using a molecular test (and the rest are still diagnosed using microscopy).
Binika agrees: Early and accurate TB diagnosis is not only a critical gateway to TB care pathway, but also a public health and human rights imperative. It helps stop the spread of TB infection as well as reduces unnecessary human suffering and risk of untimely deaths due to TB.
Bringing “lab to the people” (and not people to the lab) is the first vital step towards finding all TB. If we fail to do this, we will keep missing TB cases despite having the best of tools in the labs.
If problem is at the grassroots, then why are programmes not rooted there?
“Community engagement and awareness is a critical cog-in-the-wheel to find all TB, treat all TB and prevent all TB. If the problem is in the grassroots, then the programmes should also be at the grassroots. If the problem is in the community, then the programmes should also be in the communities. We have to detect TB early and accurately,” asserts Binika.
Bringing the laboratory services closer to the community, especially in coun- tries with centralized health-care services like Nepal can be a big game changer in the context of finding TB early and linking with care, said Binika.
The WHO recommended point-of-care and decentralized molecular test (True- nat) can increase accessibility of TB testing for people who would otherwise either get missed or diagnosed late. Molecular tests not only accurately tell if a person has TB but also confirm if a person is resistant to most powerful anti- TB drugs, like rifampicin.
(To be contd)