A month after 45-year-old Ranjan* was diagnosed with brain tuberculosis, his limbs began to go paralyzed. A year later, exhausted by the physical, mental and financial impact of the disease, Ranjan decided to stop taking his medication. By this time, he was unable to walk and could not leave his home in Odisha’s Mayurbhanj district. When Nirmal* was diagnosed with TB in neighbouring Jharkhand state, he was hesitant to go to a health facility for treatment. Living with mobility challenges, Nirmal felt routinely discriminated against by his community and feared he would be discriminated against by medical staff.
Ranjan and Nirmal’s experiences demonstrate the urgent need for the public health community to understand and respond to the needs of not only those who are diagnosed with TB, but those who become disabled as a result of it. Despite being a curable and preventable disease, TB remains one of India’s biggest public health crises, with over 2.5 million people diagnosed with the disease every year. Of course, the government has set a target of eliminating TB by 2025.
Why do people with tuberculosis develop disabilities?
Disability in TB patients can be caused by the disease itself, depending on the affected site (lungs, brain, spine), or can occur as a result of side effects of some anti-TB drugs, causing temporary or permanent disability. For example, permanent hearing loss is well known in drug-resistant TB patients treated with kanamycin. Unfortunately, global investment in TB drug development has been historically low, resulting in a limited pool of highly toxic drugs.
A 2021 systematic review of 131 studies from 49 countries, including India, revealed that the most common disabilities following TB infection were psychiatric (23.1%), respiratory (20.7%), musculoskeletal (17.1%), hearing (14.5%), visual (9.8%), renal (5.7%) and neurological (1.6%).
Why are disabled people more susceptible to tuberculosis?
People with disabilities are more likely to have delayed TB diagnosis because health services are unavailable or symptoms are masked by existing disabilities. Furthermore, physical inaccessibility impedes utilization of health services. For people with disabilities being treated for TB, monthly trips to health facilities to collect medicines and meet doctors are challenging. Customized, person-centred care and support that takes into account the unique needs of people with disabilities is a key requirement.
What can be done to bridge the gap between TB and disability?
At the policy level, it is essential to integrate disability into public health programs. Disability is not yet recorded in post-treatment follow-up protocols, creating data gaps in estimating the scale of the problem.
Second, post-treatment protocols must be expanded to provide access to comprehensive support services, including physical rehabilitation, help to cope with and adapt to acquired disabilities in adulthood, and livelihood training or skill-building to transition to new jobs.
Third, ongoing surveillance to identify side effects of TB drugs must be strengthened. Finally, convergence of policy initiatives is essential.
Public health facilities need to be made more inclusive and accessible with ramps, physical infrastructure and transport options. Treatment awareness and counselling is needed at the community level. From a legal perspective, given the disabling nature of TB, the Rights of Persons with Disabilities Act, 2016 needs to be amended to include cardiac and pulmonary disorders/impairments.
*Names have been changed to protect privacy
Anupama Srinivasan and Dr Ramya Anantakrishnan are Assistant Director and Director of REACH.
© Indian Express Ltd.
First uploaded on: 17 December 2023 14:25 IST