Disabilities in TB patients can be caused due to the disease itself or by side-effects of some anti-TB drugs
Albeit a curable and preventable disease, TB remains one of India’s biggest public health crises, with over 2.5 million people diagnosed every year.
Written by Anupama Srinivasan and Dr Ramya Ananthakrishnan
One month after 45-year-old Ranjan* was diagnosed with
tuberculosis (TB) of the brain, his hands and legs began to go numb. A year
later, exhausted from the physical, emotional and financial repercussions of
the disease, he gave up and decided to stop taking his medicines. By this time,
he was unable to walk and confined to his home in Mayurbhanj district of
Odisha. In the neighbouring state of Jharkhand, when Nirmal* was diagnosed with
TB, he was reluctant to visit a health facility for treatment. Living with a
locomotor disability, Nirmal felt routinely stigmatised by his community and
feared discrimination by health staff.
Ranjan and Nirmal’s experiences illustrate the urgent need for the public health community to understand and respond to the needs of people with disabilities who are diagnosed with TB as well as people with TB who develop disabilities. Albeit a curable and preventable disease, TB remains one of India’s biggest public health crises, with over 2.5 million people diagnosed every year. Of course, the Government has set an elimination target of 2025.
Why do people with TB develop disabilities?
Disabilities in TB patients can be caused due to the disease
itself, based on the site that is affected (lung, brain and spine). Temporary
or permanent disabilities can also be caused by side-effects of some anti-TB
drugs. Permanent hearing loss among people with drug-resistant TB, who were
treated with Kanamycin for example, is well-documented. Unfortunately, global
investment in TB drug development has been historically low, resulting in the
availability of a limited pool of drugs, with high toxicities.
A 2021 systematic review of 131 studies from 49 countries, including India, revealed mental health conditions (23.1 per cent), respiratory (20.7 per cent), musculoskeletal (17.1 per cent), hearing (14.5 per cent), visual (9.8 per cent), renal (5.7 per cent), and neurological (1.6 per cent) impairments to be most common post-TB.
Why are people with disabilities more vulnerable to TB?
It is likely that diagnosis of TB could be delayed in people with
disabilities, either due to inaccessible healthcare services or because
symptoms were masked by existing disabilities. Additionally, physical
inaccessibility hinders access to health services. A person with a disability
on treatment for TB finds it challenging to visit the health facility every
month to collect medicines or meet the doctor. Customised, person-centred care
and support that takes into account their unique needs are critical
requirements.
What can be done to bridge the gap between TB and disability?
At the policy level, it is essential to mainstream disability
within public health programmes. Disability is as yet not recorded in the
post-treatment follow up protocol, leading to data gaps in estimating the scale
of the problem.
Second, post-treatment protocols must extend to providing access to comprehensive support services, including physical rehabilitation, support to cope with and adjust to living with a disability acquired in adulthood, livelihood training or skill-building to transition to new jobs and so on.
Third, continuous monitoring for identification of adverse TB drug reactions must be strengthened. Finally, a convergence of policy initiatives is essential.
Public health facilities must be made more inclusive and accessible with ramps, physical infrastructure and transport options. There must be treatment literacy and counselling at the community level. From a legal perspective, the disabling nature of tuberculosis makes a case for amending Rights of Persons with Disabilities Act, 2016 to include heart and lung disabilities/functional disabilities.
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