Paul Farmer first saw multidrug-resistant tuberculosis in the early 1990s in Haiti, from where he smuggled a patient’s sputum sample to test for drug resistance in Boston. Months later, Partners in Health co-founder Dr. Jim Kim with other colleagues discovered a cluster of fifty MDR-TB patients in a squatter settlement of 100,000 in Lima, Peru. That’s when they started to talk to the world about the emergence of MDR-TB.
Farmer and Kim retold the story of their efforts to fight tuberculosis in resource-limited settings Thursday at a pre-World TB Day event in Washington, DC, hosted by USAID.
What they needed back then is no different from what’s needed now to confront infectious disease outbreaks, Farmer said: “staff, stuff, space, and systems ” — trained staff, including community health workers, physicians, room to care for patients, tools with which to diagnose them, and medicine with which to treat them.
Lack of “staff, stuff, space and systems” Farmer said remains “a reason why Americans who fell ill with Ebola didn’t die, while West Africans never received proper care for their illness.”
Even with better resources, tuberculosis remains a frightening disease, TB survivor Nauman Rana who followed Farmer later in the evening said.
One of the strongest emotions he felt after being diagnosed with multidrug-resistant tuberculosis in New York City was anger. Anger that it took doctors eight months to diagnose him with MDR-TB after he showed symptoms, and anger that he had to take toxic drugs that were decades old. Pretty soon that anger was replaced with depression, anxiety and paranoia as the life-saving treatment for MDR-TB brought with it side effects that put him in isolation and affected every part of his life, he said.
It was 2013 when Rana went to the emergency room for pain in his lower chest. The doctors sent him home with ibuprofen, and the pain continued to get worse until he went to see a lung specialist. The specialist did a series of tests, but not for tuberculosis. Six months after his initial symptoms, doctors did a biopsy on his lungs and diagnosed him.
They ordered him to get treatment through the New York health department. At this point, the disease had destroyed tissue in his right lung, and after he spent a couple days coughing up blood and other matter, he feared for his life.
With treatment, he said, “I assumed I’d be okay.” He wasn’t. Finally, eight months after his emergency room visit, he was diagnosed with MDR-TB.
For the next two years, every day was a battle, Rana said. In addition to dealing with constant pain, debilitating fatigue, and hearing loss, Rana became depressed. That was a side effect he was not expecting, he said, and he had no one to help to help him deal with it. “You don’t want to do anything, just lock yourself in a room and do nothing,” he said. “Untreated, the disease will kill you, but even if it is treated, it hurts and kills you in other ways,” he said.
Rana, recovered now, is grateful to be a survivor, but he, like Farmer, wants to see progress.
“This is a room full of people fighting to expand the size of the pie and stop the sterile debates about what is the most we can do with the least amount of money for the most people,” Farmer said. “That hasn’t been a winner of a recipe for global health. It’s when you put the “E” on the end – global health equity – and raise your aspirations to just match the aspirations of people living with poverty.”