CAPE TOWN, South Africa – When Jonathan Stillo asked the medical director of a mountaintop sanatorium in Romania what she would like to change about the sanatorium, she said she would like to blow the place up and build a small, modern clinic in town where the patients are – a model that’s more in-line with current tuberculosis control practices which encourage treating patients in their communities.
Stillo, a member of the TB Europe Coalition and a doctoral candidate at the City University of New York, spent several years researching tuberculosis in Romania. He lived for months in one of the world’s last remaining sanatoria – a throwback to an era before antibiotics when tuberculosis patients were exiled to isolated medical facilities for tuberculosis care. Thanks to cutbacks to social welfare programs, the sanatorium is often the only choice for Romania’s poor who are infected with tuberculosis, Stillo explained. “The patients were at the sanatorium because they couldn’t afford a home or afford to feed themselves,” he said at the Union Conference on World Lung Health on Thursday.
The Soviet-era sanatorium was built in the 1930s to care for 800 tuberculosis patients and today houses between 150 and 200 patients, most of whom have multidrug and extensively drug resistant tuberculosis.
Being at the sanatorium didn’t help patients, however. Stillo found after returning to the sanatorium months after completing his research there that every single one of the MDR and XDR-TB patients he had known had died.
Romania accounts for a quarter of all tuberculosis cases in Europe, and has the most drug resistant tuberculosis cases in the region. The country also has the world’s lowest treatment success rate for MDR-TB, with just 16 percent of MDR-TB patients successfully completing treatment, Stillo said. This rate is similar to the “spontaneous cure rates” of patients who receive no treatment at all, according to the TB Europe Coalition.
Romania’s national TB program is severely underfunded, with the Ministry of Health receiving the smallest budget as a percentage of gross domestic product in the European Union. It also lacks technical knowledge, Stillo said, which often results in medicine shortages. Romania and other Eastern European countries have problems bringing in bedaquiline and delaminid, he said, adding, “TB programs just don’t know how to deal with procurement challenges.”
With so many challenges to TB control in Romania, a proposed tuberculosis law is welcome news for TB patients and caregivers. The law would require several services to be available for TB patients: universal access to treatment and directly observed therapy, paid medical leave, psychosocial support and services, and even a monthly food allowance for the duration of treatment. But, Stillo said, unsurprisingly, the bill is at a standstill because of concerns over costs.
If TB control efforts in Romania and other high-burden countries remain as they are, the world will see more patients like Iulian, who Stillo met during his time at the sanatorium. Iulian was first diagnosed with drug susceptible TB in 2007, then multidrug-resistant TB in 2010, and finally was diagnosed with XDR-TB in 2012, the same year he died. Iulian and patients like him are failed by the system at every step, Stillo said. Iulian’s progression to and eventual death from XDR-TB was most likely caused by a stockout in one of his medicines, Stillo wrote in this piece.
“Ultimately, what killed this man is more complicated than tuberculosis,” Stillos wrote. “Iulian’s death certificate says that he died of tuberculosis, but more accurate causes of death is poverty and living in a country that is unable or unwilling to dedicate the resources necessary to ensure that even the poor can be cured of TB.”