Any infectious disease that is treatable and curable also needs support from the society

Doctor Emilia Tabacu, member of the Committee for Multidrug-Resistant Tuberculosis in Bucharest, told us about the effects of the complete treatment regimen and the challenges faced by the patients.

What is the standard treatment received by patients with multidrug-resistant tuberculosis?

Multidrug-resistance means that the patient is resistant to two major drugs, Isoniazid and Rifampicin. It is only from this point on that we can call the disease multidrug-resistant; usually, patients are not resistant to just these two drugs, but also to Streptomycin, the injectable drug, and to Ethambutol. This is why all patients must undergo a bacteriological investigation, namely a drug sensitivity test, before the treatment is initiated. Until recently, in Romania, the drug sensitivity test was performed only after testing culture on solid media and the result came very late, at least three months after. Only then the treatment was individualised. There were 3 months when the patients were practically untreated, and the disease would evolve while some of them were hospitalized, at home, or in the care of TB dispensaries. Now that the modern techniques involving liquid media and genotypic methods were introduced in Romania, we are able to know within two hours if a patient is resistant or not.

How could we describe the bacillus that is resistant to two or several medicines? Can this be a bacillus from sensitive tuberculosis that was not treated?

It depends. There are cases of resistant tuberculosis in previously treated patients who either abandoned the treatment or received the treatment a little “by ear”, without a drug sensitivity test being performed. There are the chronic cases which, because of the patient’s negligence may lead to this kind of chemo-resistance, but there are also new cases where the infection was caused directly by this microbe coming from a resistant patient. This happens because the bacillus mutates and the patient can become infected immediately with a resistant microbe, without their fault.

Are the drugs for multidrug-resistant patients available in Romania?

For a patient who is resistant to only one drug, the treatment regimen under the National Tuberculosis Control Programme could have sufficient coverage. However, for multidrug-resistant patients, the drugs are not sufficient and this is where the ones obtained through the programme financed by the Norway Grants intervene.

How long has the complete treatment been available in the other European countries?

It has been available for many years now, maybe even more than ten years. In our country, treatment continuity was also part of the problem. The drugs were available in hospitals but, after the patient was discharged they would refer to the territorial dispensary, only that these facilities would not have the drugs. It was easy for a patient to discontinue their treatment because there was no way of getting the drugs. Thus, patients acquired increased resistance.

Does the individualised treatment scheme under the programme entitled “Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control” cover the treatment needs?

Yes. When we had drugs on various projects, they were always sufficient. Except that not all patients can be included in these programmes. There are patients who are already under treatment, who maybe have one year of treatment or more. We do not include them in the programme we let them continue their treatments with the drugs under the National Programme. There are also patients who refuse the medication.

Do you have cases of patients who tried to procure the drugs from other countries?

Yes, of course, there have been many. However, a complete regimen may amount to more than EUR 10,000, over the two years needed. Most of the patients have low or no income. Although, lately we have found cases in middle class patients. If it used to be said that tuberculosis is a poverty disease, we cannot say this anymore now. We have many students and young employees among our patients. Some of them, unfortunately, get to the hospital too late for fear they would lose their jobs. The disease progresses and they come to us when they have already started eliminating blood through their lungs. Without treatment they are a source of infection for those around them and are contagious for the general population, for all of us.

Why has this myth emerged, of tuberculosis being a poverty disease?

Indeed, patients now come from all types of backgrounds, but nobody can deny that tuberculosis is predominant among the poor. However, it is not only a poverty disease. Here, in our country, people consider it to be shameful. I have seen a teacher recently who said “Doctor, please, don’t write on my medical leave note that I have tuberculosis.” And what should I do, what you have is what I will write. And then she said “I’d rather go on unpaid leave, because I don’t want people at work to know. They would never have me there again.”And there have been cases of people who were isolated at work, and that is a fact. Unfortunately we also have a lack of medical culture in relation to tuberculosis and this is true even amidst the medical staff.

What does this mean?

Let’s say a person with tuberculosis suffers a digestive haemorrhage and that they throw up blood like they would do after an ulcer or something similar. They are sent to another hospital, where they are told it’s tuberculosis but then they are kept at a distance. A brief examination is performed (mostly of the medical chart than of the patient). These things should not exist.

What are the risks that the patients, as well as those in the communities are exposed to if they do not comply with the treatment?

In the patients’ case, the disease progresses, complications develop and the disease becomes chronic. One can no longer hope for a positive outcome, for a cure. The risk for those around, because this disease is practically collective, not only of the patient in question, is to become sick. We do not get those around us sick immediately, we infect them. Once infected, if the body is healthy, it defends itself and the disease does not develop. However, once the body’s immunity is weakened, due to who knows what other cause, the disease develops in one, two or five years.

How long can it take from infection to the disease?

There can be as much as ten years. The risk is huge. This is why even in Europe, when they look for a job, our citizens undertake tests and are monitored because they come from a country that has the highest incidence in the European Union.

What are the chances for a cure if one benefits from a full treatment regimen?

Because of this project, we now have a correct and qualitative treatment, so the chances are very high. The patient’s compliance with the treatment is critical. The drugs are very good, but because the treatment lasts so long, there are various reactions. One has to take a handful of drugs every day. Some of those who are undergoing treatment stay in the hospital for one month, then they run away from the hospital and we cannot expect that they will continue to take that handful of medicines. Through this project, with the help of psychologists and community nurses, we hope that patients will understand that this is their chance, their last train, because they have guaranteed medication throughout the treatment. Any infectious disease that is treatable and curable also requires support from the society, including sympathy from the employers well. These people must no longer be marginalized or cast away.