You may remember last year when RESULTS UK came out with a report called “Tuberculosis: Voices in the Fight Against the European Epidemic“. The report featured the voices and stories of the individuals and communities who have been fighting TB on the ground. One of the stories we featured was that of Iulian, a Romanian who had contracted multidrug-resistant TB (MDR-TB) and had been forced to break off his TB treatment in order to go back to work to support his family.
This week we received they terribly sad news that Iulian developed extensively-drug resistant TB (XDR-TB) and passed away a few weeks ago. Jonathan Stillo, who interviewed Iulian for our TB Voices report, has written an incredibly powerful and inspiring obituary titled “An Obituary for Iulian, a Romanian XDR-TB Patient, Husband, Father, and my Friend“. We have included an excerpt here telling of Jonathan’s return to the sanatorium and seeing Iulian the last time before he died:
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.
The full obituary can be read by clicking here.
Iulian’s story was the most powerful story we received for the TB Voices report, and it reminds us why the work we do matters. 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.
Our thoughts are with Iulian’s family during this difficult time.