Muzzafar, Mina, Lena: Patients’ stories from Dushanbe

A few weeks back, the MSF Press Office in South Korea had contacted the Uzbekistan and Tajikistan missions, saying that they had a journalist, Young Me Kim from Sisa In, who wanted to do a piece on MSF projects in Central Asia for World TB Day.

A few weeks back, the MSF Press Office in South Korea had contacted the Uzbekistan and Tajikistan missions, saying that they had a journalist, Young Me Kim from Sisa In, who wanted to do a piece on MSF projects in Central Asia for World TB Day. This presented me with an opportunity to visit the medical team in MSF`s pediatric TB project in Dushanbe, the capital of Tajikistan.  

So there we were, in the outskirts of Dushanbe, visiting a local health facility where patients go to take their daily dose of TB medicines—called a Directly Observed Treatment Strategy (DOTS) center.  My colleague Ana, an infectious disease doctor from Brazil, explained that the medical team had five new potential TB cases to investigate through one of the key activities of our project, contact tracing.

Contract tracing is basically finding family members of TB patients in order to try to identify the person who may have originally brought a patient in contact with the TB bacteria. This is crucial to stopping the spread of the disease and starting more people on treatment as early as possible. Finding five new leads was certainly good news for the pediatric TB project in Dushanbe, and if it helps patients get on treatment early, for them and their families.

Ana explained our next visit would be to a patient's home. Mina, a young girl with multi-drug resistant spinal TB, had broken her leg while running. As she was not able to go to the nearest DOTS corner, the medical team was going to check up on her and see how she was doing.

When we arrived, her grandfather welcomed us in the house. He began to tell us how Mina had been hospitalized for seven months, and when she was finally out of the hospital and well enough to play, she broke her leg. The nurse came with her daily cocktail of 6 medicines (consisting of four pills, a powder sachet, and a daily injection). He sat with us and listened as Mina's mom explained her husband had TB and now refused to accept the fact that her daughter had TB, which did not surprise our medical team, as the disease is highly stigmatized in Tajikistan.

Shortly afterwards, we went outside because the family offered us cake. The generosity and hospitality of the simple act struck me because moments before the grandfather explained that since it was winter time, as a construction worker he was out of a job at the moment and nutrition packages provided by MSF were a great support as the family tried to make ends meet. 

As we were heading out, he wished us good health. His granddaughter had 11 to 17 months more of treatment ahead of her. While the counselor was talking with Mina and her mom, I requested that our translator ask the grandfather if he knew what World TB Day was. He did not, and I had a gut-wrenching feeling that our well-intentioned efforts needed to make a difference for Mina and patients like her.

The translator informed me that the medical team would organize a party at the pediatric hospital for World TB Day, and make sure that Mina and her family would be invited to attend.

At the next health center we visited, we saw Muzzafar, a 6-year-old extensively-drug resistant TB (XDR-TB) patient whose grandmother had died from TB. Due to the effect of Clofazomine, Muzzafar`s skin had turned slightly orange. Despite this, he was happily running around and playing with a frog puppet Ana had brought with her. Little Muzzafar has another 20 months ahead of him before he finishes his treatment. 

Two days earlier, we had a chance to meet Lena, a 17-year-old girl who was experiencing similar side effects to Muzzafar, and also with XDR-TB.  “Clofazomine?” she asked Ana, as she does each time, because she is eagerly waiting to finish the treatment. Lena explained to us that she had missed a lot of time from school due to the TB treatment, and due to the fact that her skin was slightly discolored she did not want to go back.

Ana explained to us that Lena had learned how to put on her make-up to hide the discoloration and encouraged Lena to teach other girls in the TB hospital how to do their make-up in the same way. Due to her complicated medical history, she may be treated for up to two years.

Having had the opportunity to meet Muzzafar and Lena, I had never been prouder of MSF's efforts to increase access to new medicines, which often have less severe side-effects; to introduce shorter TB treatment regimens so patients can experience less interruption to their lives; and to stimulate research and development efforts for future TB patients.  

Back in Dushanbe after dinner, I sipped tea with the journalist Young Me. She asked me to explain what MSF's advocacy efforts on TB are.  I told her how MSF called on Johnson and Johnson to make Bedaquiline more available; and after years of research and development being deprioritized, our partnership with ministries of health and research institutes will investigate if a shorter, and less toxic regimen could be identified.  

Young Me told me how the TB patient association in South Korea risks losing funding. Through her article she wanted to make a difference for them and for our patients, like Mina. That was also a feeling I am familiar with, as those of us who work at MSF want to be able to make a difference for our patients.

The conversation also exemplified why MSF works with journalists—to amplify the voices of our patients and share their experiences with audiences that MSF staff alone would be unable to reach.

For this World TB Day, find out more about MSF's work on TB, learn about what policies work, and find out about MSF and the Stop TB Partnership's Step up for TB Campaign. MSF is inviting ministries of health to implement the latest World Health Organization treatment guidelines on TB by World TB Day 2018.

You can join the campaign calling on governments to Step Up for TB: write to your National TB Program or Minister of Health, ask your local parliamentarians to take action, or promote the campaign on social media using #StepUpforTB. If the campaign inspires you, follow MSF`s work on TB on twitter at @MSF_TB.  Let's make a difference for Mina, Muzzafar, and Lena, as well as the many patients who are in their situation.