Scholars take a rights-based approach to tuberculosis epidemic in India

Researchers at the University of Chicago have developed a multidisciplinary public health initiative that aims to make human rights an important component in the control and prevention of tuberculosis. The initiative is focused on low- and middle-income populations in India, which is home to a quarter of the world’s tuberculosis cases.

The rights-based approach promotes the use of litigation, legislative and policy advocacy, and grassroots activism to improve prevention and treatment outcomes for tuberculosis. It also protects the rights of people living with and vulnerable to tuberculosis. Researchers will be traveling to Beijing and Hong Kong later this year to disseminate their ideas beyond India.

Brian Citro, lecturer and acting associate director of the Human Rights Clinic at the University of Chicago Law School, spearheaded the effort with Evan Lyon, assistant professor of medicine, and Kiran Raj Pandey, a physician and Health Services research fellow. Mihir Mankad, health policy adviser at Save the Children UK, is the fourth member of the project team. A group of UChicago law students are also involved.

Citro said the project, funded by UChicago’s global centers in Delhi, Beijing and Hong Kong, is inspired by the global rights-based campaigns against HIV, which have helped galvanize public support, spurred research and improved access to medicine.

Even though tuberculosis is a treatable illness, the World Health Organization estimates that it remains a worldwide leading cause of death arising from a single infectious agent. In 2013 alone, there were approximately nine million new cases of tuberculosis and 1.5 million related deaths.

Citro points out that the burden of the disease is disproportionately borne by low- and middle-income countries, which account for 95 percent of all deaths from tuberculosis globally. In recent years, drug-resistant strains of tuberculosis have occurred partially because there is no effective infection control and because patients experience interruptions in their treatment.

“In India, this public health crisis is driven by social and economic factors and structural barriers,” said Lyon, who has worked on public health and clinical programs for tuberculosis and HIV for 15 years. As in other parts of the world, Lyon notes that individuals most vulnerable to tuberculosis in India are the poor, persons living with HIV, migrants, drug users and prisoners. These groups often do not have access to testing and treatment services, and lack awareness about the nature of the contagion and prevention techniques. Poor sanitation and unhealthy living conditions perpetrate the problem. Stigma and discrimination are rampant.

“We need to move away from a strictly biomedical-centered approach to a more rights-based one,” said Pandey, a Nepalese native who worked as a medical officer at a rural district hospital in Doti, Nepal from 2007 to 2009, managing a tuberculosis clinic and an anti-retroviral therapy HIV center.

Pandey said one of the project’s key goals is to articulate the legal obligations of governments to ensure access to quality testing and treatment of TB. This includes a responsibility to effectively regulate the private health sector and to ensure adequate financing for tuberculosis, through budget prioritization and equitable resource allocation.

In December 2014, the UChicago project was launched with a conference at the University’s Center in Delhi. The conference brought together more than 70 international experts, including lawyers, doctors, researchers, human rights activists, government officials and former tuberculosis patients. Featured topics included identifying tuberculosis “hot spots” in slums and other highly affected areas; lessons from the doctors’ work in Nepal and Haiti; the growing problem of drug-resistant tuberculosis and access to quality tuberculosis diagnostics.

“The conference was successful because it started a dialogue and established partnerships,” Citro said. “Many of the people we brought together, especially some of the medical researchers and government officials, had never thought about tuberculosis from a human-rights perspective. Now they’re open to the approach.”

Following the conference, project members have conducted legal research and analysis, including international treaties, case law, related United Nations reports, case studies and policies related to the disease. In the summer, they are planning a judicial workshop to familiarize the legal community in India and other Commonwealth countries with the legal and human rights issues associated with tuberculosis. Citro and Pandey presented their ideas in early March to district-level health workers and community activists in Tamil Nadu, a southern state in India.

In addition, the project team will guest-edit an issue of the Health and Human Rights Journal out of the Harvard School of Public Health, which will be published in 2016 and dedicated to tuberculosis and the right to health.

“We believe a rights-based approach to tuberculosis will not only protect the rights of people living with tuberculosis, but will result in better health outcomes. Encouraging the active and informed participation of people living with and vulnerable to tuberculosis is key to this process,” Citro said.

Becky Gillespie contributed to this article.