Romania's incurable curable disease

Jonathan Stillo is a medical anthropologist with the City University of New York who has been researching tuberculosis in Romania since 2006. The opinions expressed are his own.

I met Iulian shortly after he was diagnosed with multidrug-resistant tuberculosis, a strain of TB that is resistant to the two most powerful anti-TB drugs. I have been researching TB in Romania since 2006 and became close to Iulian at a TB sanatorium I frequently visited for my research.

During one of my visits, he told me that his family was unable to survive without his income, yet he was ill with multidrug-resistant tuberculosis and therefore unable to work to support them. When Iulian first contracted TB, he took his medication regularly, but he was forced to interrupt his treatment so that he could go back to work to help his family.

Interrupting treatment increases the likelihood that patients will develop drug resistance, making it more difficult to cure. Iulian told me: “Here in Romania, if you don’t work, you starve to death. There are two options: you take the TB pills and get better but starve, or you work and have to come back to the sanatorium. So it’s a lose-lose situation.” Iulian made the choice to return home to help his family.

Iulian died a few months ago, leaving behind his young wife and his daughter who had just begun school. Iulian represents one of Romania’s 25,000 TB cases. While TB is curable, every year about 1,500 people in Romania will die from it.

Many TB patients die despite receiving treatment for this curable disease. I have begun to label these cases “socially incurable” – TB that is treatable but in the end proves to be incurable due to socio-economic reasons such as shortages of drugs, lack of adequate patient monitoring, and lack of supports for patients—all of which are problems in Romania.

TB treatment is about much more than just drugs. Social and economic factors play a huge role. Often the loss of a patient’s wages leaves their families in extreme poverty. Due to the serious side effects of treatment for drug resistant TB, it is almost impossible for patients to work at the same time as receiving treatment.

Treatment for drug-resistant TB lasts two years and the Romanian government issues no benefits to patients throughout this period.

Iulian’s family sold their only asset to support themselves, a horse and cart, but this money only lasted a short time.

As a result, Iulian’s family survived on less than $100 a month. A small amount of support might have saved his life and returned him to the workforce for another 25 years. Instead, his family now survives on welfare.

The World Bank has repeatedly pointed to TB treatment as one of the most effective and efficient public health investments available.

This is because TB affects people during their most productive working years. If treated correctly and returned to the labour force, former TB patients contribute to the economy for decades. Those who die leave behind dependents who fall into poverty.

Addressing TB in Romania means asking difficult questions about what is preventing patients from being cured. The TB that infected Iulian was not biologically different or exceptionally drug resistant. Rather, for the time being, it was socially incurable.