Editorial: Developing a Human Rights-Based Approach to Tuberculosis.

B, Camila Gianella, Brian Citro, Evan Lyon, et. al (2016)
Health and Human Rights Journal vol. 18. No. 1.

This special section of Health and Human Rights Journal focuses much-needed attention on tuberculosis (TB) and human rights—particularly the right to health. Even as TB has surpassed HIV as the top infectious disease killer in the world and the global threat from multidrug-resistant TB (MDR-TB) continues to grow, approaches to fighting the disease remain primarily biomedical and public health-based.1 These traditional approaches dominate global and national TB programs and research on the disease, and they largely ignore the underlying social, economic, and structural factors driving the epidemic and drug resistance. All the while, the highest TB burdens exist where vulnerability and marginalization increase the risk of infection and disease and erect barriers to accessing testing and treatment services.

Unsurprisingly, developing countries account for 95% of all TB cases and deaths, and disease prevalence within countries reflects the same startling disparities between the wealthy and the poor.2 In India, which accounts for 23% of all TB cases in the world, data from a Demographic and Health Survey study reveals that members of the poorest quintile are at a 5.5-fold higher risk for self-reported prevalent TB than those in the wealthiest quintile.3 Key affected populations—the poor, people living with HIV/AIDS, mobile populations, prisoners, miners, people who use drugs, and children—face entrenched stigma and discrimination, further restricting access to services, discouraging health-seeking behavior, and making it difficult for them to mobilize and demand realization of their rights.

Despite this, and in stark contrast with efforts to combat HIV, human rights have played only a peripheral role in efforts to prevent and treat TB. This is evident in the limited role rights play in global advocacy efforts to fight TB, the dearth of TB-specific legislation articulating the rights of people with TB, the underdeveloped jurisprudence involving TB and human rights in courts around the world, and the lack of funding for rights-based TB programming. More generally, the role the law plays in supporting or hindering efforts to combat TB has not been fully examined. As one prominent example illustrates, even where funding is available for human rights programming for TB, there is a lack of demand. The Global Fund to Fight AIDS, TB and Malaria advised the authors it has analyzed approximately 50 country funding requests for TB submitted during the past two years and found that, while the majority identified human rights-related barriers to services, including high levels of stigma and discrimination, only a few included any investment in human rights programs to address those barriers.

A human rights-based approach to TB is grounded in international and regional treaties and national constitutions.4 These laws establish the rights of people living with and vulnerable to TB, including the rights to life, health, nondiscrimination, privacy, participation, information, freedom of movement, housing, food, water, and to enjoy the benefits of scientific progress. Human rights law also creates corresponding legal obligations of governments and responsibilities of private actors, promoting accountability and access to remedies for rights violations. Moreover, as has been demonstrated in the fight against HIV, respecting and promoting the human rights of people with TB is likely to foster more sustainable interventions, improved prevention and treatment outcomes, and reductions in drug resistance. The six papers and two perspectives in this special section cover diverse topics and concerns related to TB and the right to health, with a broad geographic scope. Nonetheless, key issues and themes emerge and cut across multiple papers. These include:

  • the lack of adequate research and development of health technologies for TB and the right to benefit from scientific progress;
  • imprisonment and compulsory treatment of people with TB;
  • human rights-based approaches to TB in advocacy, litigation, and assessment strategies; and
  • accountability and the human rights obligations of governments and international organizations to prevent and treat TB.

Several papers also examine problems in specific contexts around the world, including in Kenya, North Korea, Peru, and India.