Totally Drug Resistant TB? I can’t even imagine.

I spend most of my day reading about TB. I go over statistics, case fatality rates, and co-infection with HIV. It’s easy to get lost in the numbers. But every so often I hear a story from someone with TB that shakes me to my core. The personal stories illustrate how devastating TB is for people and their families and remind me why I do what I do. No story is more heartbreaking than that of someone suffering from drug-resistant TB.

People with drug-resistant forms of TB are forced to take more toxic second-line medication with horrifying side effects. They stay on treatment for two years and are often kept in isolation, away from their friends and family. If that is what it’s like to have MDR or XDR-TB, I can’t even imagine what it would be like to be diagnosed with a new form of TB that is completely resistant to all medication.

This past week doctors in India reported twelve cases of TDR - totally drug resistant TB. It’s 100% fatal. I spent most of today trying to imagine what would it be like to get diagnosed with an airborne disease that has no cure? What if you had already spread the disease to the rest of your family?

In an attempt to gain further understanding, I re-read RESULTS UK’s report Tuberculosis: Voices in the fight against the European epidemic. One of the most compelling stories was about a Romanian man named Iulien. When first diagnosed with TB, he took his medication regularly. But like so many others, he was forced to interrupt his treatment so he could go back to work and support his family. By the time he returned home to restart treatment the disease had become resistant - but the local dispensary had run out of one of the drugs required to treat MDR-TB. Taking incomplete treatment puts him at risk for developing XDR-TB, which is even more fatal.

Iulian explains: “I have this fear in my heart 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.” He was isolated during treatment and wasn’t able to help his wife raise their two children, which he says was the worst part about being sick.

Jonathan Stillo, a TB researcher, explains the impossible choices Iulian was forced to make.  “He took his treatment conscientiously but had to go back to work in order to take care of his family. He knew it placed him at risk for a relapse and that is what happened…Given the choice between his own health and his family’s well-being, he will choose them every time. It is a choice he shouldn’t have to make.”

Reading Iulian’s story again made me wonder, if this is what it’s like to have MDR-TB, what would it be like to have TB that is completely drug resistant?

I can’t even imagine.

Stay tuned for Q&A on completely drug-resistant TB