On May 5th 2012, Romania lost one of its most loving citizens at the young age of 42. This is an obituary for Iulian Ilie Dobre, one of the 1,500 Romanians who die of tuberculosis (TB) every year. When desperately poor people like him die, few people notice. Beyond his immediate family, I don’t know how many will miss him. But Iulian’s death matters. It matters to me and it should matter to you. Even though this man had virtually nothing in this world, he had a wife and little girl who are now lost without him and a son who is starting university in the fall. He was a responsible person, but he was poor. I knew Iulian for the last two years of his short, hard life. During that time, I watched TB turn him from a strong young man into a shadow of himself.
Many people blame TB patients when they don’t complete their treatment. They don’t know that treatment for drug-resistant TB (MDR and XDR) is two years long and requires taking handfuls of pills and receiving daily injections. They don’t know that the medication makes you feel sick so you cannot return to work. Most of all, they don’t know that the poorest people need to return to work. There are no “sick days” for the poor.
This is a remembrance for a patient whom I admired and respected. He helped me understand TB in Romania and how it both exacerbates and creates poverty. Secondly, his death makes me face the questions that always plague me: What is a researcher’s responsibility to their research participants? What do we owe to the families of our participants after they are gone? How do we respect their contributions to our research?
Iulian and I met shortly after he was diagnosed with MDR-TB (Multi-Drug Resistant Tuberculosis). I had never heard anyone speak with such love about their family. Many patients would tell me they loved their families while I was doing interviews at the mountaintop sanatorium, but when Iulian said it, you knew it was true. He glowed when he talked about them. He was tortured by his separation from them. He especially missed his little girl. He would tell me about life in his village, and how he loved to watch American Western movies. He just seemed like such a good person.
Iulian and I became close through a series of strange coincidences. I would frequently leave the sanatorium, sometimes for months at a time. Anytime I returned from a long absence, Iulian would have also just arrived. While I was gone, he was back in his village trying to complete his treatment. He would leave the sanatorium before his treatment was finished to return to work to help his family. Inevitably, he would relapse and we would meet again at the sanatorium. Iulian and I enjoyed talking with each other. He used to tell me that talking to me made him feel calm. Most of the time, Iulian was stressed. He would constantly worry about his wife and little girl. His phone would ring and his wife would tell him they didn’t have enough money for food or medicine. He felt powerless. Before he became ill, Iulian had worked in Spain painting houses and in Greece picking fruit. He told me he loved to work, especially with animals at home. “I would work another 30 years and I wouldn’t ever feel upset or sad, if only I were healthy.”
Iulian’s daughter suffered without him. He told me once that she had found one of his old hooded sweatshirts still smelling of gasoline because he worked with cars. Her mother caught her hugging it and crying. She said “it smells like daddy.” It was one of the saddest things I had ever heard. In less than a year, he would be dead.
Last summer, I approached Iulian with a proposition from the TB Europe Coalition to have his story included in a publication called “Tuberculosis-Voices in the Fight Against the European Epidemic.” Before they contacted me, they couldn’t find a Romanian patient willing to tell their story and be photographed. I sat down with him and told him that Romania needed people brave enough to be advocates, to tell their story. I was nervous; it was a big request. I told him that when they asked me if I knew a patient who might do this, he was the person I thought of. Not only did Iulian agree but he insisted that his real name be used. He said that he was not ashamed of having TB and wanted the public to know about the disease so that people wouldn’t die of it anymore.
Countless people have read Iulian’s story by now. His was one of several presented in a European Parliament session about TB. There is also an article about him on pg. 81 of the Parliament Magazine and a quote of his appears in a new WHO brochure . Unfortunately, in March, just a few months after these publications came out, his TB became XDR (extensively drug resistant). He died less than two months after that. I last saw Iulian at the end of March when I brought US Embassy staff to the sanatorium where I did my research. The US Embassy in Romania held a fundraiser to buy toiletries for the patients and even Vice President Joe Biden and US Ambassador to Romania Mark Gitenstein participated .
I wanted to show the Embassy staff how difficult life is for poor Romanian TB patients and their families. We went room by room accompanied by the Romanian National TB Manager and handed out little care packages to the patients. It was a bittersweet return for me because so many of the patients I had grown close with were already dead. About halfway down one hall, our procession came to a halt and a nurse told me there was someone who wanted to see me inside. As I got closer I saw it was Iulian. She whispered in my ear that he was much worse and now had XDR. She started to cry. As I entered the room he had a huge smile on his face and said “Hey Jon!” He was smiling ear to ear, but looked terrible. His cheeks were sunken and his skin was hot with fever. He looked so frail. My heart sank. He told me that he was much worse, but that he was still fighting. He died two months later in his home with the people he loved so dearly. He once 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.” These words couldn’t be truer. In Romania, every day, TB patients are forced to make impossible choices between their own well-being and that of their family. Iulian chose his family. I’m sure he doesn’t regret it.
Iulian’s death may not have been caused by, but was certainly hastened by a shortage of one of the drugs he needed. Nine months before he died, his local dispensary, as well as the sanatorium, were out of ciprofloxacin. This drug is inexpensive and since 2008 has been replaced in World Health Organization treatment protocols by a more effective but expensive one (ofloxacin). Romanians are guaranteed free TB treatment, but drug stock-outs are common. This stock-out and subsequent treatment interruption probably caused Iulian to develop XDR-TB.
As a researcher, but also as a human being I feel a responsibility to Iulian and his family. He wanted his story told. He wanted his life and death to mean something. Now that he is gone, I owe it to him to make sure that he is not forgotten. This is a man who wanted desperately to get better so he could return to his family. He stopped taking his treatment and returned home to work when they could not pay the bills. Every single TB-related death in Romania is a tragedy, but this is one of the worst—to lose a man who was so young and who really wanted to get better. Iulian didn’t have the vices like alcoholism that people and even doctors use to shift the blame to the patient. He didn’t want his daughter to grow up without a father. Ultimately, what killed this man is more complicated than tuberculosis. 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.
In his last year of life, Iulian did something that few Romanians with TB have had the courage to do. He wanted people to know that he was suffering from this disease so that others would not have to. Most Romanian TB patients would disagree with him. They feel too ashamed to tell their stories and reveal their identities. I’m proud of Iulian and am happy to have been a part of his life. I hope his family knows how important being in those publications was for drawing attention to the problem of TB in Romania. Thousands of miles away from his village Iulian told me that he wanted to make a difference, and by telling the world his story, he did. It is a shame he didn’t live long enough to see.
I am going back to Romania for another year in June. I will visit Iulian’s village to pay my respects to his wife and daughter. I will be bringing them some money, the photographs I took of him and two and a half hours of my interviews with him on audio CDs. I have written before about what to do with the recorded interviews of dead patients and the balance between guaranteeing their privacy and giving their family the gift of some of their last words. (See my post: The Trobriand Islanders Never Friended Malinowski on Facebook. I wrestle with the same issue after a 20 year old woman died.) It’s not a decision I take lightly. Iulian put his trust in me and gave me permission to use his words and photos as I saw fit to help fight TB. I know he would want his family to be able to hear him telling me how much he loved them. His little girl deserves to hear how much he cared for her. As a human being first, and an anthropologist second, this feels like the right thing to do.