Since 2011, MSF has focussed on improving children’s access to treatment for tuberculosis (TB) in Tajikistan.
In two separate interviews, Dr. Ana P. Cavalheiro, MSF's Medical Activity Manager for the TB programme in Tajikistan, and Valoyat Ghafurova, a nurse from Tajikistan, explain the unique ways MSF helps treat both children and adults with TB and prevent the spread of the disease through testing, treatment, and education.
Interview with Dr. Ana P. Cavalheiro from Brazil, MSF’s Medical Activity Manager for the TB program in Tajikistan:
You cannot so easily see the bacterium in the sputum (mucus) of children with TB. So you have to do a clinical diagnosis. It is harder to do it. Many times we don`t have proof that the child really has TB. It is like a puzzle and then you have the clinical features, you have the index case and then you have the chest X-rays, a skin test. And then with all this information, we do the diagnosis. After the diagnosis is made then we have to test for other illnesses. We have to see if the child has any other problem that could make it harder for them to have the treatment. For example, we do an HIV test, tests for Hepatitis, we see how the liver is, if the child has anemia, and then with this information, we come up with the best treatment. When we have all these things we present the results to the Ministry of Health here, which is the local authority here with local doctors, and discuss the treatment we believe should be started, and once agreed, we talk to the patient.
Many times it’s challenging to tell the parents of the patient. For example, I was talking to one of our doctors just now, about this three-year-old girl who clearly has TB. Her sputum is negative but she has all the symptoms, the X-ray shows very classic signs of TB. And she’s just three years old. The mother is in treatment and herself she doesn’t believe so much in her treatment, she’s not treating it well and then we talked many times with the family and other relatives, and we couldn’t make them accept that the child was really sick. And then, unfortunately, the child is without treatment.
With positive results, then it’s different. Then you have more ways to help someone accept starting the treatment. But it’s never easy. Even for others, many, they don’t accept the treatment. Who wants to force this with a child? It’s complicated. Many times we talk with the parents, many times we had this challenge with the parents and they accept it. Now we have one of our patients who are on treatment. She had proven abdominal tuberculosis. But the mother didn’t agree to it, the treatment, because the husband was in Russia and he is the one who makes the decisions for the family and they had difficulty communicating with the husband. They could only communicate when he called and she couldn’t call him. So for more than a month, we talked so many times to her about how the child needs the treatment, with the mental health team, many, many times, until one day, I think it was two months later, they finally agreed and now she’s doing really well.
It’s something that you have to go through every consideration. It’s hard, it’s for a long time and sometimes they start the treatment and then they’re only feeling better after six, or eight months of treatment.
The hope is that we can assure them that they’re receiving the best treatment. Some patients go through years of treatment for TB and without any result. Then we give them better medication, and in only one month of waiting, the tests are finally negative. That’s something that brings hope to them. Finally, they’re having the best treatment. And it’s not just having the side effects without any improvement.
We have a family of four people in one of the families we’re treating. They were diagnosed with TB, I think two to three years ago, and already three people in the family from the same house have died of TB after trying treatments that didn’t work for years. At that time, they couldn’t access the new TB drugs. They had extensively drug-resistant TB (XDR TB). I remember this family, the last one who died when he was alive and we tried making them accept a new treatment [after the approval of the importation of bedaquiline and delamanid into Tajikistan], and they didn’t. After he died, we talked again with the family and then this time they accepted.
We had so many sessions of talking, you know, to help them trust us, to start this new treatment. We were saying to them, that now it’s different, different medication. It was hard for them to believe that and when they started treatment, they were still a little bit suspicious. The first time that we came back they could see, you know, they were feeling better and we were giving better medication without injections, that it was something that was good for them. After less than a month, their tests results came back as negative. After having positive test results for over two years: it was finally negative. And now it’s so good to see the difference for the family now. The person that takes the decisions in this family is the mother and she was the hardest one to convince. Now she’s very happy and she comes and greets us and she’s so happy with the support.
Interview with Valoyat Ghafurova from Tajikistan, MSF’s Nurse Supervisor in the capital Dushanbe:
Valoyat helps manage a team of MSF and Ministry of Health (MoH) staff who conduct weekly TB ‘contact tracings’. This involves going to the homes of patients who’ve been diagnosed with TB and identifying the family and friends who they’re in close and regular contact with. After being interviewed and checked for physical symptoms of TB, these potential patients are advised about TB, and how and where they can be tested and treated. The aim of the program is to proactively prevent the spread of TB by not only testing and treating but also with education.
We do contact tracing quickly, almost every week. We take the list of the patients who are registered in the clinics, focusing on Drug Sensitive (DS-TB) and Drug-Resistant (DR-TB) forms of TB, but mostly we give priority to DR-TB and Extensively Drug-Resistant (XDR-TB) TB patients. We have special forms which we fill out – we call it a contact tracing form. For example, if we identify the patient with DS-TB and DR-TB, every three months we visit, we do a follow up for this family, for this patient in their home. We do contact tracing for our patients like we have 77 patients for now and also we do contact tracing for patients from MoH.
I think that it’s really very important to do contact tracing because for the last two years we really moved to bring the care to the patient and we have really good results with the contact tracing. The aim is to identify TB patients and also to start early treatment for TB patients. And the third aim is to give education about TB among the population. So when we do contact tracing it’s not just about checking weight and height and for symptoms, it’s also giving more information about TB, about the symptoms about TB, how TB is transmitted, so it’s like giving more and more information.
The last two years we are really doing it very intensively. We did it before but we didn’t focus on it, but now, we do it almost every day. We do training for MoH staff at the clinics and during our trainings, we have a very big module about contact tracing. And during this training, we try to give education and information about how to do the contact tracing and we do it with our forms like showing them how they fill out the forms and identify cases.
We heard about contact tracing before also because in some clinics they were using it. They do contact tracing, they try to call them and ask them to do an X-ray and to check the sputum. But the problem is that it was not happening as strictly as we do it and they would not follow up in person, in their homes. For example, we don’t just inform people but we also visit them in their homes, pay for tests and transport. When staff would call people to follow up and see if they would come into the clinic or hospital for an X-ray, some people don’t have money for that. So when we invite them to do an X-ray or to check their sputum we pay for the transport money. When we invite people we know that the main problem for them for not coming is that they do not have money for that. That is why we said that it is so important to support them. That is why we raise these questions during the interviews when we talk to them about contact tracing.
In 2017, in the last four months we have 14 identified patients with contact tracing.
You know there are a lot of examples of why contact tracing is so important. But I remember one example, a vivid example, when we visited a family, in this family there are three people who already died from TB and we tried to communicate with them but it was very difficult. And just this year they gave us another chance to talk to them in their homes, and so we invited them to do investigations and tests, and we identified four new TB patients.
They are now on treatment, already they are patients and it was really very difficult to convince this family to do the contact tracing. The family condition is very bad and they were very poor and they lived so far away and it was really difficult for us to convince them - but when we invited them and we showed them the diagnosis and they had already infected each other so finally they believed us and they started the treatment. There is another story that I can also say was about a family. We did a contract tracing for the family and there was a girl who was against this contact tracing and she just left. And we were a little bit worried because she was suspected of having TB and after three months, we did a follow-up and repeated, and we found out that this girl she has TB and now she is on treatment.
You know, when we started it was very difficult to convince doctors, it was difficult to talk to them and we couldn’t find a common language with the family nurses. But now they are waiting for us and asking when we will come and when we will visit these families. And if you will see through this like papers I have here the red one, it’s all contract tracing [points to a page filled with dozens of names and dates for home visits]. Each team for each month we do a schedule for contact tracing.
About MSF in Tajikistan:
MSF has worked in Tajikistan for the last 20 years, focussing on improving children’s access to treatment for tuberculosis (TB). Where possible, the programme in Tajikistan aims to treat patients at home, demonstrating that comprehensive TB care for children is feasible. The project also treats children who have both TB and HIV, and TB and severe malnutrition.
Since November 2011, MSF has been working with the Tajik Ministry of Health (MoH) to diagnose and treat children and their families who are diagnosed with drug-sensitive and drug-resistant tuberculosis (DR-TB).
In 2016, the promising new drugs bedaquiline and delamanid were used for the first time in the country. To date, 26 patients are now on a treatment regimen containing bedaquiline and nine on delamanid. These drugs are for patients with complicated cases of DR-TB who previously had no treatment options left. The medications don’t have the same extreme side effects as the older treatments, including hearing loss, and early results from their use are so far showing promising results.
For TB patients: having access to new drugs with fewer side effects, and shorter treatment periods, is not only providing better medical outcomes, it’s bringing hope to people who previously had none.