As the world observes World Tuberculosis Day on March 24 to raise public awareness and to ramp up efforts to end tuberculosis (TB), many parts of it also neglect a prime area of concern: disability. Over 220,000 people die of TB in India every year. However, the number of people who acquire disabilities due to TB and adverse effects of the medication is enormous. TB leads to impairments, activity limitations, reduced social participation and has a severe impact on the quality of life, both for TB patients and their family members.
TB is an infection caused by a bacterium called Mycobacterium tuberculosis. It affects many organs such as the lungs, the spinal cord, the brain, joints, bones, the abdomen, skin etc. While some forms of TB, like TB meningitis and pericarditis are life-threatening, others – TB of the spine, bones and joints – can precipitate long-lasting disabilities.
Disability is any condition that limits a person’s ability to perform certain activities and restricts their participation in society. The WHO defines disability as a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which they live. Thus, disability is an umbrella term, covering impairments, activity limitations and participation restrictions.
Pulmonary TB patients experience reduced lung capacity; weakness, body pains; stress, depression due to which they are unable to perform their social, occupational and other activities of daily living. In children, TB has a debilitating impact on their learning and development. Similarly, extra-pulmonary TB causes severe disabilities too. Every year over two lakh people in India get TB of the spine: commonly known as Pott’s spine, it leaves the spin severely deformed, and the person paralysed and with lifelong neurological complications.
The treatment of TB is a standard course of antimicrobial drugs for six months. Over the decades, TB bacteria have however become resistant to one or more medicines, leading to the birth of drug-resistant tuberculosis (DR-TB) in some people. The side effects of DR-TB drugs such as pyrazinamide, aminoglycosides and linezolid can leave many patients with permanent physical, psychiatric, neurological, visual and auditory impairments. Almost 40% of patients treated for DR-TB lose their hearing, 3-4% lose vision, 9% suffer from neurological disturbances, 20-22% get mental health issues, and the list goes on. Even the first-line TB drug ethambutol is linked with impairment of vision.
Owing to stigma and discrimination in society, many people living with TB lose their relationships, education and income. In such a state, acquiring a disability pushes families deeper into poverty, and many people even discontinue the treatment. However, close clinical monitoring and assessments can prevent disability by effecting changes in the treatment regimen.
The Government of India has a golden opportunity to reduce, or even eliminate, hearing loss due to side-effects of DR-TB drugs. The injectable drugs known as kanamycin and capreomycin are associated with most cases of hearing loss. Earlier, it was difficult to replace them due to lack of effective antibiotics for DR-TB. But that is not the case anymore. Two new oral drugs – bedaquiline and delamanid – are safer and can replace other toxic drugs. Their scale-up on an immediate basis will go a long way in reducing hearing loss among DR-TB patients. The WHO treatment guidelines 2019 also no longer recommend kanamycin and capreomycin as treatment options for DR-TB.
Till the older drugs are replaced, government has to ensure baseline audiometry for all patients starting DR-TB treatment with kanamycin and capreomycin, and as a follow-up test. Audiometry is done to detect the hearing loss early and to make changes in the treatment regimen. However, in public health systems, necessary facilities of audiometry are not available. Even the private sector does not take audiometry seriously. Baseline monitoring and follow-up on other adverse effects, including visual impairment and neurological problems, is also negligible, leaving patients to suffer even after being cured of TB.
As TB has severe consequences on quality of life for both patients and families, a comprehensive continuum of care – counselling, treatment and rehabilitation (physiotherapy, occupational therapy and speech therapy) – is a must. An individual’s health, independence and participation in society can be maintained, and even improved, by providing assistive devices like hearing aids, cochlear implants, tinnitus-masking devices, mobility aids and prosthetic/orthotic devices. Community and home-based care is also of utmost importance.
Despite common knowledge of associated disability with TB, the National Tuberculosis Elimination Program (NTEP) does not have a plan to assist such patients. The programme does not even have disaggregated data on the number of people living with TB who acquired impairments and disabilities. As a result, there can be no budgetary allocation for rehabilitation or a roadmap to link disabled people with health facilities and agencies providing requisite services. The programme does not engage actively with TB survivors to provide disability pensions and other benefits, nor does the program converge actively with the Department of Empowerment of Persons with Disabilities (DEPwD) to ensure delivery of all required services.
The DEPwD, under the Ministry of Social Justice and Empowerment, is mandated to provide assistive aids and rehabilitation services to people with disabilities through their schemes, like Assistance to Disabled Persons for Purchase/Fitting of Aids and Appliances (ADIP), national institutes, District Disability Rehabilitation Centres, Composite Regional Centres, etc. But these schemes don’t address the needs of TB patients.
For example, cochlear implant surgery and rehabilitation is provided free of cost under ADIP scheme only to children under the age of 5 years, with family income less than 15,000 per month. There is no provision or even mention of adolescents and adults with hearing impairment who require these implants in the eligibility criteria. The price at which the department procures and gets the cochlear implant surgery done is about Rs 4 lakh, and rehabilitation costs Rs 1.33 lakh approximately. However, these cochlear implants surgeries require 10-25 lakh rupees in private hospitals with no regulation of pricing of these implants and surgery cost.
Similarly, the cost of treatment, spinal stabilisation surgery and rehabilitation for correction of spinal deformities due to TB is anywhere between Rs 4-8 lakh and cost of hearing aid is Rs 7,000 to Rs 2 lakh. As TB is primarily a disease of the poor, few can afford it without government intervention.
India ratified the United Nations Convention on Rights of Persons with Disabilities in 2007 and is legally bound to uphold the rights of persons with disabilities to participate in society at par with others and right to access to rehabilitation (Article 26), assistive aids (Article 20) and other health services. TB patients have same rights under this provision.
Thus, it is high time that the NTEP and DEPwD realise their responsibility to develop and adopt a comprehensive approach to TB treatment that includes management and treatment of disabilities arising out of it. The first step towards this is collecting data on the number of people living with TB who acquired impairments and disabilities. Second, mandatory baseline audiometry and other testing to monitor and detect side-effects and impairments early, and managing them. Third, enhancing access to safer, newer and less toxic drugs. Fourth, establishing an active referral mechanism to enhance access to rehabilitation services and assistive aids within health systems.
These steps will ensure that benefits reach TB patients and survivors as guaranteed by the Rights of Persons with Disabilities Act 2016.