Equity at the intersection of tuberculosis and disability

 

One in seven people—more than one billion individuals worldwide—have some form of disability. One in four people, or 1.7 billion individuals, are infected with Mycobacterium tuberculosis, the infectious agent that causes tuberculosis (TB).

TB is a disease that causes visible and invisible disabilities, a disease whose treatment can cause disability, and a disease which disproportionately affects persons with disabilities, who may lack access to vital information on the causes and presentation of the disease, person-centered treatment, and diagnostic services.

The intersection of TB and disability has been undervalued, but here are some of the facts:

  • Tuberculosis is associated with mental health disorders, respiratory impairment, musculoskeletal impairment, hearing impairment, visual impairment, and neurological impairment. Among TB patients whose infections are resistant to drugs and whose treatment included injectables, the rates of impairment were higher.
  • Spinal TB is estimated at 8–16 cases per 100,000 people in South Africa. Globally, spinal TB may represent about 5 percent of all cases where infection spreads beyond the lungs (extrapulmonary TB cases). Spinal TB can lead to physical disabilities when the neural structures of the spine are affected by the infection.
  • Another 5 percent of extrapulmonary TB cases are TB meningitis, which occurs when TB infection causes inflammation around the brain and spinal cord. Vision loss may occur in as many as 56 percent of all cases of TB meningitis, and 14 percent of survivors of TB meningitis have long-term vision impairment.
  • Nine percent of participants in the End TB study who received an injectable drug for treatment of multidrug-resistant TB experienced hearing loss.
  • In a study of living standards of persons with disabilities, the proportion of respondents with knowledge of TB is routinely lower than HIV/AIDS and malaria. This limited awareness hampers care seeking and treatment coverage. In a study from Zimbabwe, persons with disabilities reported having TB at double the rate of persons without disabilities.
  • In a study from Uzbekistan, disability was the best predictor of TB recurrence.

More research is urgently needed to understand the relationship and intersection between disability and TB. The International Union Against Tuberculosis and Lung Disease’s objectives to achieve a world free of TB include “assessing and providing care for people with disability caused by TB or who have other conditions at the same time.” To meet those objectives, research and actions are needed to:

  • ensure that persons with disabilities and their families are included in TB programming decisions, design, budgeting and implementation;
  • recognize the disabling nature of TB and its treatments;
  • ensure persons disabled by the disease or its treatment can access the necessary services for inclusion in society;
  • ensure persons facing the disease are aware of the potential disabling nature of the disease and its treatments;
  • understand and document further the post-treatment disability of survivors of TB, and
  • adopt rights-based and patient-centered approaches that meet persons affected by TB where they are.

Persons with disability face sensory, financial, and stigma-related barriers to accessing TB services. Persons with TB may be disabled by the disease or from continued use of outdated treatments. Adopting all-oral regimens will remove the risk of hearing impairment from injectable drugs, but more action is needed to address the barriers faced in providing services and support to individuals who suffer disability from TB.

About the authors: Ms. Teng is the founder and president/CEO of TB People Philippines Organization Inc. After completing a degree in architecture, Louie contracted TB meningitis, which led to permanent vision loss. When the first treatment regimen failed, Louie enrolled in MDR-TB treatment. Louie started a new career as a TB survivor-advocate and joined the Global Coalition of TB Activists and served as a community representative of a WHO regional Green Light Committee. TB People Philippines’s projects include a TB education activity for the TB Alliance’s LIFT TB project and the TBility Disability Inclusive project under the Stop TB Partnership’s CFCS 10.

Mr. Moore has two decades of experience designing and leading public health and international development projects. From health systems strengthening work with vulnerable populations to tuberculosis control and elimination activities in high burden settings, Moe has worked across the spectrum of global health and international development with a focus on post-conflict countries. He currently serves as the TB strategic lead of the USAID Infectious Disease Detection and Surveillance project, overseeing a portfolio of TB projects in a dozen high burden countries.

Competing interests: None

(Visited 135 times, 2 visits today)