Here we tell the story of Iulian. Since we first published Iulian’s story in our TB Voices Report, Iulian developed XDR-TB and passed away in spring of 2012, leaving behind a wife and two children. Iulian spent his life working in agriculture and construction. Until he got sick with TB he had what he called a ‘beautiful life’. Here is his story:
Iulian contracted TB in 2007 and soon developed MDR-TB. At first he took his medication regularly, but he was forced to interrupt his treatment to go back to work so that he could support his family. When he returned home to restart treatment, his local dispensary ran out of one of the four drugs needed to treat his MDR-TB, meaning only part of his treatment was available. Drug stock-outs cause patients to lose faith in the system and increase the likelihood that patients develop drug resistance due to uneven treatment.
When asked about how TB made him feel, Iulian explained:
I always feel that I have this disease. I have this fear in my hear that I’m never going to get better. The pills, there are a lot of them, and they are very strong. They give you headaches, stomach aches, and make you feel like throwing up. I’m upset, because I have two children. If I’m not at home to work, to raise them…their mother has a very hard time at home, by herself. My wife has a seamstress certification, but she doesn’t have a job. Nobody will hire her, because in Romania there’s a lot of unemployment.
Despite being poor, Iulian and his wife worked hard to raise two children. His wife and little girl are now lost without him and his son will grow up without a father. This past winter, they did not have enough money for wood to heat the house. Worse still, Iulian took out loans while he was sick and now his wife cannot repay them. Iulian explains the awful situation TB places you in:
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. It’s a disease where people in society stay away from you, because they know you’re sick.
Jonathan Stillo, a medical anthropologist in Romania, witnessed Iulian’s battle with TB.
I watched this young man, who loved his family so much, waste away in just a year. He took his treatment conscientiously but had to go back to work in order to take care of his family. Iulian’s story demonstrates the helplessness and lack of choices faced by poor Romanian TB patients.
I tried to explain to Iulian exactly how close he was to developing XDR-TB. I told him that he was running out of chances and that he had to finish his present course of treatment. He wanted to, but I knew that given the choice between his own health and his family’s well-being, he would choose them every time. It is a choice he shouldn’t have had to make.
It is common for doctors to blame TB patients for not completing treatment. But Romania, an EU country, has one of the lowest MDR-TB treatment success rates in the entire world. Without access to social and economic support and appropriate treatment, most MDR-TB patients eventually end up like Iulian.
The last time I saw Iulian I showed him a copy of this report. He told me that he was glad that so many people would learn how hard it is to be a TB patient, and he hoped that by telling his story others would not have to go through what he did.