Image courtesy of Jonathan Stillo

Last year, RESULTS UK, along with valuable input from GHA France and members of the TB Europe Coalition, came out with a report called “Tuberculosis: Voices in the Fight Against the European Epidemic“. This report featured the story of Iulian, a Romanian struggling to fight MDR-TB. Jonathan Stillo, who also featured in our report, informed us of the sad news that Iulian unfortunately developed XDR-TB and passed away a few weeks ago, leaving behind a wife and two children.

Jonathan has written a very moving obituary titled “An Obituary for Iulian, a Romanian XDR-TB Patient, Husband, Father, and my Friend.” The following is an excerpt from it:

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.

Read the full obituary by clicking here.

Iulian’s story was the most powerful story we received for the TB Voices report, and we have since used it again and again for our work, including for the WHO’s brochure for its MDR-TB Action Plan as well as a feature in European Parliament Magazine for World TB Day. Iulian’s story enabled us to give a voice and a human element to a disease that governments and decision-makers continue failing to prioritise.

Iulian’s story reminds us why the work of the TB Europe Coalition and all its individual members matter. Iulian’s death was preventable, which is why it is so important that we continue to call on decision makers to listen and to take genuine political action to tackle this disease.