New York – Every aspect of getting diagnosed and treated for tuberculosis violated rights established by the United Nations Universal Declaration of Human Rights, a former patient said at a side event here Monday. From being denied employment to housing to access to quality care, the patient, Abdulai Sesay said, the TB response in his native Sierra Leone failed to protect his rights at every step.
Sesay is not alone, global TB leaders at the event hosted by the Open Society Foundation said. Failure to enforce human rights laws and practices drives the global TB epidemic, Patrick Gaspard, President of the Open Society Foundation, said. The global standard for TB treatment itself – directly observed therapy – violates human rights, activists said. DOTS – when it requires patients to take their medicine under direct supervision of a health professional at a health center – violates rights to privacy and dignity, TB survivor and activist Timur Abdullaev said. “It is degrading,” he added.
Failure to protect human rights is a major driver of failures globally to find the four million people infected with TB who go untreated every year, Executive Director of the Stop TB Partnership Lucica Ditiu said. The missing four million often come from populations, including prisoners, migrants, refugees, and other impoverished and marginalized groups, with little recourse to protect their rights, she said.
“The people who are missing don’t have the capacity to even say that they have rights,” she said.
“Verticalized and medicalized,” Ditiu said, the TB response system focuses more on the convenience of health systems providing TB care, leaving obstacles in the paths of patients. On a program level, she added, staff lack knowledge on how to create programs or request funding to protect human rights.
While 70 percent of grants submitted to the Global Fund to Fight AIDS, TB and Malaria identify human rights barriers to delivering services, director of the Global Fund Peter Sands said, only 5 percent of grants include programming related to human rights issues. Within TB grants specifically, in the past only 0.08 percent of grants addressed human rights, he said.
While that’s changing, Sands said, with 0.7 percent of funding last year going towards addressing human rights issues, the TB community still lags far behind other disease communities in protecting human rights. Four times more money goes towards addressing human rights in HIV responses than in TB responses, Sands said.
“TB patients face a kind of double jeopardy when it comes to human rights,” Sands said. “First they are not diagnosed because of human rights issues,” he said. “Then when they are diagnosed, they have their rights taken away.”
Rabita Aziz is the Senior Global Health Policy Specialist at the Infectious Diseases Society of America and is representing IDSA (which produces this blog) at the United Nations High Level Meeting on Ending TB and related side events at the UN General Assembly this week.