Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.
The numbers of Multidrug Resistant Tuberculosis (MDR) in Norway are very small, between 2 and 10 cases each year. In 2014, the total numbers of TB, including sensitive and drug resistant TB, there were 324 new cases. In comparison, in the same year, in Romania were 15.353 new cases, of which 547 were MDR, according to World Health Organization (WHO). For further information about Tuberculosis in Norway, we invited Mona Drage, deputy director with LHL International, a Norwegian organization founded by TB pacients.
LHL International has been founded by an organization of patients. What is the mission of this foundation?
The origion of LHL was five TB patients getting together in 1943, starting an organisation that would work against prejudice and fear and for the right to work and social asistance for TB patients. LHL has later evolved to include lung and heart diseases, whilst LHL International continues the work on TB.
The vision of LHL international is a world free of TB, and we work towards this through ensuring the right to life and health for those affected by TB, ensuring patient involvement, and working to end discrimination of TB patients.
What is the history of TB cases in Norway?
Norway was very hard hit by TB previously. Around 1900, every 5th death in Norway was caused by TB. In this period, Norway was one of the poorest countries in Europe. From early 1900 to around 1950 there was a steep decline in TB prevalence and mortality in Norway.
What is the present situation of tuberculosis in Norway?
Today TB is a rare disease in Norway with between 300 and 400 new cases each year. In 2014 there were 324 new cases, resulting in an incidence of 6/100 000.
In Romania, many patients with MDR and XDR abandon treatment after a few months because they start to feel better and want to get rid of the side effects of antituberculosis drugs. Is this a behavior that is found among patients in Norway, too?
MDR and XDR treatment is very long and very though for many patients, and it is very understandable that some people fell tempted to stop the medication at some point. We have had examples of that happening in Norway also, but not very often. The numbers of MDR in Norway are very small, between 2 and 10 cases each year.
What are the psychosocial needs of patients with TB? Are there significant differences between patients from different countries of the world where it operates LHL?
The psychosocial needs of TB patients vary from individual to individual, but we have seen many commonalities in the countries we work. Patients need to understand what TB is and to believe that they can be cured. They must understand why it is important to continue their medication long after they feel well and they must be motivated to do so. Speaking with ex-TB patients/peer support is highly effective, both as a motivation and sharing of a common experience. There is a lot of shame and stigma (both spoken and unspoken) among patients, so not to feel alone, but to be supported by someone you trust, be it your doctor, neighbor, spouse, peer etc.
How can the doctor gain the trust of his patients so they remain adherent to treatment until the end of the treatment?
Trust is earned over time. The doctor showing interest in the patient , letting the patient feel you have a common goal, and that he/she will be supported all the way, helps building trust quicker. This includes for example how the doctor receives the patient, what kind of questions the doctor askes and the body language of the doctor.
What are the most effective ways that lead patients to maintain adherence to TB treatment?
Make sure that the patient has enough knowledge about TB, that they believe it is curable and that they are motivated to reach their goal. That is, ensure inner motivation. In addition, regular follow up of the patients and incentives that are appropriate to that particular patient is also effective.
How can the communication between health professionals and patients be improved in order to treat tuberculosis more effectively?
A lot can be done to improve communication between health professionals and patients in order to treat TB more effectively. The first and most important step is awareness; it is important to become aware of how our words and actions affect others and whether we affect others the way we wish to. We all have areas we can improve upon when it comes to communication, and small changes can have great impact in our lives, both professionally and personally. LHL International has developed a training concept that looks at how to achieve a good result even when time with each patient is limited. Together with ASPTMR, we have had four trainings in health communication through this project so far. And the unison feedback from the participants is that they find this training very useful!
On the 1st of March, 12 nurses and orderlies of the ”Marius Nasta” Institute of Pneumophtysiology in Bucharest participated at the training „Types of TB control measures”, organized and lectured by Dr. Cristian Popa, doctor at the medical facility. The training brings important information which helps the hospital’s staff to be careful in the situations they are exposed to and to the measures with which they might avoid the contagion with the TB virus from the patients. The TB illness risk at the hospital staff in the TB facilities is estimated to be 3-4 times higher than in the general population. The nurses and orderlies, which are the most exposed personnel to this danger, because they spend much time around patients and have direct and repeated contact with them, are not specifically trained at the moment of the employment in the health facilities dealing with TB patients. That is why dr. Popa wishes to transform this transfer in a frequent training, through which the employees of the hospitals in all the departments to be trained.
At the training, the participants were explained the TB ways of transmission, the infection sources and the solutions at hand for the protection of the hospital staff, such as the special medical respirators, education of patients regarding cough hygiene and a more strict policy for the visitors entering the hospital. In January, one training with the same subject was organized for supervision doctors, key-personnel in the territory which monitor the TB control activities and train the medical staff.
The theme established by the World Health Organisation for the World Tuberculosis Day (WTBD) this year is “Unite to End TB,” and one of the four sub-theme is “Together we test, treat and cure more effectively.”
Through its activities, the project entitled “The Improvement of the health of the Romanian population through enhanced tuberculosis control” falls perfectly in line with this sub-theme by providing TB laboratories with advanced equipment and by ensuring rapid diagnosis services. We have talked about this with Mr Răzvan Vulcănescu, Undersecretary of State with the Ministry of Health, coordinator of RO_19.01 – “Public Health Initiatives” Programme
What is the contribution of the project “The Improvement of the health of the Romanian population through enhanced tuberculosis control” to the results of the Programme RO_19.01 – Public Health Initiatives, managed by the Ministry of Health?
The Ministry of Health was designated as the operator of the Programme RO 19.01 – “Public Health Initiatives,” and its objective is “to improve public health and reduce healthcare inequalities.” Two of the expected outcomes of the programme are the improvement of the prevention and treatment of contagious diseases (including TB) and the development of resources at all the levels of the healthcare system. This project seeks – and the results have already begun to show – to consolidate the institutional capacity of the National Tuberculosis Prevention, Surveillance and Control Programme PNPSCT) with a view to controlling the TB epidemic in Romania, as well as to ensure the early detection of cases of multidrug-resistant tuberculosis (MDR TB) and of extensively drug-resistant tuberculosis (TB XDR). The project also aims at ensuring full, continuous and quality treatment with second-line drugs for MDR/XDR TB patients, as well as at developing an integrated community support model for the treatment and prevention of TB in poor and vulnerable groups. The project was prepared based on the thorough understanding of the current social factors associated to TB and of the interventions from outside the healthcare sector, in particular in relation to social support and the prevention of the disease in vulnerable groups.
In more than one year and a half since its inception, this project has determined considerable improvements: we have ten laboratories fitted with ultra-advanced equipment which can cover the entire territory of the country, we have trained pulmonologists all over the country, we have an integrated community support model for the treatment and prevention of TB in poor and vulnerable groups. How do these results look from the perspective of the WHO, in the context of the World TB Day (24 March)?
The theme of the World TB Day (WTBD) this year, as announced by the WHO, is “Unite to End TB,” with reference to government, communities, the civil society in the field and the private sector, therefore addressing all stakeholders that can contribute to this goal. One of the four sub-themes that the WHO promotes in 2016 for the WTBD is “Together we test, treat and cure more effectively,” and the project “The Improvement of the health of the Romanian Population through enhanced tuberculosis control” falls perfectly in line with this sub-theme, through the provision of TB laboratories with advanced equipment and through the rapid testing services which they now can offer patients. As such, the project contributes to the international effort to stop this disease and follows the lines of the WHO Stop TB Strategy, aimed at eradicating the TB epidemic by 2030. Among others, this means that the activities of all stakeholders should focus on the patient and on assuming ambitious changes in the public health system.
During the last year, more than 10,000 persons have been tested using rapid diagnostic methods in the laboratories that were provided with equipment under this project. This means that, in time, there will be less new cases of disease in the communities and, ultimately, the overall number of TB cases will also decrease. What is the impact of this project on a social level?
The impact of this project translates into better diagnostic services, better treatment, directly-observed treatment (DOT), social support and preventive interventions for epidemiologically-relevant and vulnerable groups, which in time will lead to the reduction of economic and social differences caused by TB in Romania and in the European Economic Area.
Ensuring early diagnostic, followed by continuous, complete and quality anti-TB treatment DOT and incentives in the form of food for the patients in order to increase treatment adherence will lead to a better treatment success rate among TB patients who will in this way be able to return to work, becoming productive citizens again. Moreover, preventive interventions in the poor rural communities, including in the Roma communities, will contribute to better targeting of these populations in the primary healthcare services, to the decrease of the number of new TB cases, the reduction of stigma and of the discrimination of TB patients and their families, as well as to an improved social and economic status of the members of the community.
Tuberculosis is no longer a disease of poverty but many Romanians are not yet aware of this and do not expect to become ill. The diagnostic is hard to accept for a bank manager, for example, or for a lawyer. Cătălina Constantin, the President of the Association for the Support of Patients with Multidrug-Resistant Tuberculosis, talked to us about the social and psychological problems faced by tuberculosis patients, but also about the importance of the permanent training of the medical staff working with TB patients.
What are the problems, beyond the disease, the problems that are determined by the disease and are complementary to it?
There is a context, before the disease; tuberculosis is no longer a disease of poverty. The main vulnerability is a weak immune system. The general context is that there are many cases of tuberculosis in Romania and low immunity always exposes people to the risk of contracting the disease. Tuberculosis affects people in all the dimensions of their lives: psychological, social and medical.
What happens when someone finds out the diagnostic?
Regardless of the form of tuberculosis, it is always a shock for the person concerned. Most of the times, the diagnostic of multidrug-resistant tuberculosis (MDR TB) is not established from the start, because there are only a few places in the country where we have the appropriate equipment to make this kind of determination rapidly. Things are still like this: you find out that you have tuberculosis and after one or two months of treatment you can find out that you have MDR or extensively drug-resistant tuberculosis (XDR TB). But all patients go through the shock of that moment when they find out the diagnostic, the long duration of the disease, the fact that they have to fully reconsider the following six months or two years of their lives and put everything else on hold and follow the treatment. There are many who are unable to do this, they lose their jobs, lose opportunities, stop going to school or give up going abroad to work, they postpone their wedding or leave their girlfriend or boyfriend. However, the most important thing is losing one’s job because not all patients are employed under an employment agreement or under other legal work contracts and, if they are employed, the contract does not reflect the total amount of money they receive and then one of the major problems is that their income decreases dramatically. On top of this, the needs increase. For example, if the parent who became ill was taking care of the children, he or she can no longer do this, they must hire someone (our note – the hospitalisation period for MDR or XDR TB cases may last between three and ten months or more, until the patient becomes negative, meaning until the patient no longer transmits the disease). Because they take the tuberculosis treatment, there is a high probability to develop adverse reactions to the medication and other amounts of money are needed to take other medicines to reduce the intensity of these adverse reactions. These additional drugs are not free, some are partly compensated by the state, others are not. Some patients experience pain because of the anti-TB treatment, others develop liver conditions which means another treatment, other expenses. The patients need rest and food, and food also costs. Before tuberculosis, they could eat anything, now they need meat every day, rich food, rest and quiet.
Another social problem is that many patients have to change profession or their job. Many times, this is costly or impossible. If they work in constructions and one of their lungs was affected, if they were exposed to environments that lower their immunity or to stressful environments, they must give up that job.
At psychological level, anxiety-related conditions, psychotic manifestations and hallucinations may appear. I remember one patient who said that she was feeling a sharp pain in her head, as if someone had stuck a knife there. Hallucinations are complex and real, in the sense that another patient, when she was taking her treatment, believed that she was a canned paprika and could not understand what she was doing in bed instead of being in a jar.
Are they obsessed by the question “Where did I take the disease from”?
Of course, they are obsessed by the question “Why?” because they are blamed for having contracted the disease. This is what they are told by people who are afraid, from physicians to their own families. “Why me?” they ask themselves. And then come periods of fury, depression and, in the end, acceptance, if they are lucky and receive support. When they accept the situation, they can understand that the treatment is the way to be cured and that it is accompanied by a multitude of unpleasant things.
How important is the communication between the patient and the physician?
In this relationship, both parties are responsible, the patient and the medical practitioner alike, whether the latter is a physician or a nurse. The tuberculosis patients consider that the person taking care of them is very important and then they do not ask only for the diagnostic and the treatment, but also for many other things: acceptance, understanding, empathy, advice in matters that are not related to the specialisation in question. They do not necessarily receive these and this happens for various reasons, because the physician and the practitioner also have their own needs: time, training and support, because many of them are burned out. If we want efficient medical staff we have to make sure that they are provided with regular training sessions, to remind them what it means to maintain communication with the patient, we need motivational intervention but also to teach them to strike the right balance in their work.
How did the association you lead appear?
In 2011, I was working as a volunteer with the Red Cross and I was coordinating a psychotherapy and social support programme for patients with multidrug-resistant tuberculosis during their treatment sessions. But I have been working in the field of tuberculosis for about 20 years. I was a nurse at the “Marius Nasta” Institute, then a psychologist from din 2005, and when I started my volunteer work with the Red Cross I was providing psychological support to the patients in sector 5 in Bucharest. I saw many patients – too few of them were diagnosed with multidrug-resistant tuberculosis at that time – and they had very difficult situations in their lives. The shock was when I had a therapy group of 20 people with multidrug-resistant tuberculosis, a group where they felt secure because they were surrounded by others with the same kind of problems.
I was helping them increase their self-esteem and maintain their motivation to remain adherent to a treatment that was causing them a lot of problems. There was however one dimension that I had no answer to and which pertained to their relationship with their families. When, as part of the therapy, I asked them to draw their families, one patient drew his family but he was not in the drawing. Another one had come with his wife, who also had MDR. He drew himself, his wife, their child and the cat, but they were enclosed within a high fortress wall inside of which no one else had access. They felt humiliated each time they went to the Assessment Committee and I used to prepare an entire intervention to deal with this aspect alone. I would help them vent and project themselves with some sort of power that would make it OK to ignore and think that the others were the problem, not them. These experiences gave me the idea to start the association.
The practice showed that some TB patients might abandon the treatment after the first month of administration, because they begin to feel better, or continue to take only a part of the compulsory medication, discarding those with unpleasant adverse reactions (nausea, vomiting, bone aches, etc.). The pneumologists say all the time: these moments favor the development of the Koch bacilli (Mycobacterium tuberculosis) resistant to the existing anti-TB drugs, and the patients become a source of resistant TB infection. In this context, the treatment under direct observation (DOT) by community nurses and community health workers (called DOT supporters) is extremely important. The project Coordinator, Florin Sologiuic, working with the Center for Health Policies and Services (CHPS), partner in the project ”Improving the health of the population in Romania by increasing TB control” explains the role of the Center in implementing the directly observed treatment (DOT) in communities.
In how many communities in Romania the TB directly observed treatment is implemented by DOT supporters?
In the project ”Improving the health of the population in Romania by increasing TB control”, we have 82 communities in 6 counties: Botoșani, Neamț, Gorj, Dolj, Călărași and Giurgiu. Those 50, as we initially began, were not enough, because we realized we have patients in several towns and we wanted to cover as much as possible.
How were the DOT supporters selected in these communities?
Based of the communities having TB patients. This was the selection criterion for the DOT supporters. In the communities with patients, the health mediators and community nurses of the local social care authorities were included in the project. Some of the employees leave, they go to work abroad or find another job, some take maternity leave. At present we have 89 DOT supporters, out of which 4 are Roma health mediators.
What has to do a DOT supporter in this project?
Initially, the worker contacts the patients following to be enrolled in the project, those who receive financial incentives which must ensure an additional support for the medication.
In each county we have also one coordinator of the DOT supporters and, based in the data he or she provides, the supporter gets in touch with the patients, explains them what is all about and give them a file explaining her rights and obligations. If the patients agree to enter the program, signs a consent form in order to receive the directly observed treatment. Afterwards, the supporter goes to the family doctor in the community or to the TB ambulatory in the catchment area of the community and administers them three times a week to each patient. The DOT supporters also encourage the villagers to participate at the medical caravans, information sessions about TB which are organized in these communities.
How do the directly observed treatment process is taking place?
So far, in this project, 150 patients receive directly observed treatment. In average, a DOT supporters has 1 up to 3 patients. It is not very simple, because the treatment implies travel in 3 different days to the patient, so one cannot have many patients, otherwise one wouldn’t have time to do all the work. In each of the 3 days in which the patient has to take the treatment, the worker watches the patient taking each pill in the list of treatment. Because the reactions are sometimes difficult for the patient, from vomiting to headaches or deafness, it is a good thing that the patient to be encouraged and monitored when taking the treatment, to avoid the relapse with aggravated form of multidrug resistant tuberculosis.
What else does the DOT supporter has to follow at the patients?
Being in close contact with the patient, in case he or she declares the change of the health status or tells the worker that something with impact on the disease or treatment happened, the DOT supporter communicates with the family doctor or the TB ambulatory that the status has worsened or the new situation the patient informed him about. It is possible that, at some patients, other diseases appear, ant this fact should be notified.
Interview with Mr. Razvan Vulcanescu, Undersecretary of State with the Ministry of Health

The Ministry of Health is the operator of the “Public Health Initiative” programme, under which the Norwegian Grants 2009 – 2014 provide funding for the project “The Improvement of the Health of the Romanian Population through Enhanced Tuberculosis Control.”
The projects’ major activities include the implementation of a nation-wide functional network of TB laboratories and facilities equipped with high-end rapid diagnosis technology, plus training for the specialised staff in operating this equipment, in order to increase the capacity for tuberculosis control in Romania. In order to find out more about the long-term benefits of the creation of this laboratory network provided with modern equipment and about the training of pulmonology specialists, we talked to Mr. Razvan Vulcanescu, Undersecretary of State with the Ministry of Health.
The project “The Improvement of the Health of the Romanian Population through Enhanced Tuberculosis Control” has provided training for over 500 pulmonology specialists so far. As a result, they have become important resources for the public TB control system. What does the Ministry of Health intend to do in order to further strengthen the TB control network?
I have always been of the opinion that human resources and the correct empowerment and training of the human resources are absolutely vital when embarking on a journey, if you want to reach a certain level of performance, if you want to make a difference compared to what was previously done. Human resources are an asset for this project, but they will continue to bring results after this project is completed as well. The entire pulmonology network needs people who are very well trained with respect to the latest discoveries in the field, in order to be able to ensure the quality of the standard of care. To achieve this, the Ministry of Health and the National TB Control Programme seek to ensure further training for the staff (and here I refer not only to physicians, but to nurses and laboratory staff as well) and to extend the training to the primary healthcare network for TB control (family doctors, their nurses, community nurses, healthcare mediators, etc.). Practitioners who are very well trained can move from knowing and applying the methods, to becoming trainers in their turn. There are countries where tuberculosis has perhaps a lower incidence than in Romania but which, in the context of globalisation, of migration – especially in Europe at present – are now faced with an increased incidence of tuberculosis cases, in particular among certain social categories. They rely on those who have the latest information on how to control TB, and therefore there is a chance for our colleagues trained under this project to become experts at European level and be able to disseminate the information that they learn both during the training, and by treating patients. This is an opportunity, because the World Health Organisations closely monitors the evolution and control of tuberculosis in Romania. The WHO Report for 2015, which has been published recently, makes specific reference to what the development of tuberculosis control has meant for our country lately, and it praises the palpable results generated by he projects run by the “Prof. Dr. Marius Nasta” Institute of Pulmonology, including this one.
A network of very well endowed laboratories with state-of the-art equipment has been put in place. How will the sustainability of the activities performed in these laboratories be ensured once the project is completed?
The project was developed in line with the National Tuberculosis Control Programme, which, in its turn, is in line with the National Health Strategy 2014-2020. Clear, distinct and targeted stages have been defined, we followed a Gantt chart that set out a number of stages and the financing for each of them. At this moment, with the Norwegian funds, we have managed to put in place a sort of start-up for tuberculosis control. Under this project, the “Marius Nasta” Institute was provided with substantial amounts of money that it has used according to the stage planning. Then, in our opinion, in addition to human resources, there are other important aspects. People must be helped by being provided with this with equipment, with these laboratories. A correct, rapid and high-quality diagnosis is key to ensuing proper treatment and to stopping TB from spreading to the general population. For the following stages, the Ministry of Health is focused on ensuring the continuity of this intervention. This is why, in 2016, we will organise the national centralised procurement procedure for diagnosis consumables, in order to ensure sustainability and the control of tuberculosis in Romania.
This project also comprises activities aimed at increasing treatment adherence by means of social vouchers for patients who comply with the treatment. Do you believe it will be possible for this intervention to be implemented nation-wide?
What we want to raise awareness about is what the WHO itself wants to raise awareness about in each and every country. It is what is called health in all policies, and it is a centralised and cross-institutional approach to health problems that may have socioeconomic implications. This is why we need the involvement of all institutions, organisations and partners who can play a part in the control of tuberculosis in Romania. Results have already begun to show due to these projects financed by the Norwegian funds. We can see that the treatment success rate for sensitive TB is of over 85%, but the same rate for multidrug-resistant tuberculosis unfortunately continues to remain at approximately 32%, according to our latest data, which means that these interventions that I was referring to before should directly target the categories that are most vulnerable and most exposed to the risk of treatment default. It is important, before ensuring treatment adherence, to make sure that we have universal access to diagnosis and treatment for the patients. Of course, we will take all necessary steps in order to be able to reduce the number of TB cases in Romania and to increase patient adherence to the treatment. We can definitely say that the partnership* for this project between the authorities, patient care institutions and NGOs with a vast experience in the field has functioned very well and is an example to be followed: when everybody sits at the table and knows what it is that must be done, it can lead to the achievement of common goals. When the project is completed, we will be able to effectively assess where we have started from and where we are.
* The project is implemented by the “Prof. Dr. Marius Nasta” Institute of Pulmonology, the Romanian Angel Appeal Foundation, the Centre for Healthcare Policies and Services and LHL’s International Tuberculosis Foundation (Norway)
A training session for supervising physicians was organised at the end of November.
25 supervising physicians, who work under the National Tuberculosis Prevention, Supervision and Control Programme (PNPSCT), in Bucharest, attended the training session “Control of TB transmission in healthcare facilities” organised in November by the “Marius Nasta” Institute of Pulmonology. This training is part of the project “The Improvement of the Health of the Romanian Population through Enhanced Tuberculosis Control,” under the “Public Health Initiatives” programme, financed by the Norway Grants 2009-2014.
The training of supervising physicians is an important stage of a process that seeks to strengthen the capacity of the PNPSCT to prevent and control tuberculosis in Romania, as they are those who monitor the tuberculosis control activities in healthcare facilities and who train the medical staff of pulmonology hospitals around the country so that the disease may not be transmitted from the patients to the medical and auxiliary staff, to patient carers or other persons who come to the hospital. The aim of these staff training sessions is, among others, to create a common understanding of tuberculosis control activities among physicians and nurses, as well as to ensure their appropriate knowledge of the steps that have to be taken in order to prevent people from becoming ill with tuberculosis in hospitals, given that the risk the medical staff is exposed to is, according to estimates, three or four times higher than in the case of the general population.
During the training, the participants discussed the classification of tuberculosis among hospital-acquired diseases, the assessment of the risk of tuberculosis transmission in laboratories and during the specialised investigations (bronchoscopy, radioscopy, radiology), and about the respiratory protection measures for patients and the medical staff. The conclusion drawn at the end was that supervisor visits must not be seen an instrument for the control of healthcare facilities, but as exchanges of experiences between physicians, as pointed out by dr. Cristian Popa, from the “Marius Nasta” Institute of Pulmonology, one of the trainers.
Liliana G. is 28, she is a real estate agent and in October she was admitted to the “Marius Nasta” Institute of Pulmonology where she was diagnosed with multidrug-resistant tuberculosis.
I live in a village in Teleorman County, but I work in Bucharest. Everything started with a food poisoning at the end of September, when I was taken to the Municipal Hospital. There, among other tests, I also had a chest X-ray and the doctors saw a spot. They gave me a treatment for pneumonia, which I took for two weeks and then I went to have another X-ray, but the situation had not changed, so I ended up at “Nasta”.
I was not even aware that tuberculosis still existed. The doctor here told me: “You are suspected of TB”. I had the tests done and the results showed that the disease was resistant. For me, it was a shock. I did not even know what resistance meant… Then, I found out. I had expected to stay in hospital for three months at most, then to go home and go on with the treatment for six to eight months, but I was told it was going to last longer. I am here since October 18, and I’m supposed to leave mid-December.
My immune system was very weak, and the tests showed this too. Nobody in my family had ever had tuberculosis, nor had any of our neighbours, I simply took the microbe from somewhere and I suspect it was from the public transport means or from work. I found out that it is spread by air, and I work a lot with people, I am a real estate agent. All sorts of clients come, one never knows… What happened to me, I don’t wish it on anybody. I was working very much, six days a week, ten hours a day, plus commuting to and from home. I was very weak. I live in Teleorman and sometimes I would travel the 50 km distance to work in Bucharest, and used public transport.
I have pictures of my family, of my nieces, next to my bed. My family visits me every week here. I live with my father and my sister. They were heartbroken when they found out I had tuberculosis, they couldn’t cope with it, they were feeling that they had no strength left, as if the world had just ended. We lost my mother five years ago, and when this happened it was like seeing them reliving it all over again… I told myself that if I complain about it would do them no good either. I gathered my strength for them.
I did not have adverse reactions to the treatment, but I trained myself not to have any. If I have a bad day, the pain starts, but I prefer not to think about it. It is very important to have the support of your family, to know there is something waiting for you when you get out of the hospital, and so I only thought about what was making me feel good. I willed myself not to have any pain. If I felt a little pain in my leg, I would say it was nothing. And so far I haven’t had any adverse reactions to the drugs.
I have a degree in psychology and I told myself I had to be able to be in control of this. I also attended the flight school in Băneasa, to become a flight attendant. I worked for a time at a company until it went bankrupt. Now, I will no longer be able to work in this profession, because of the TB diagnosis. I worked for three years at the real estate agency. They are still waiting for me, I told them about the diagnosis and they said that all I had to do was get better and that they would wait for me. But I can’t do it. After I get out of here I will stay at home for two or three months and then I will look for a job that will enable me to work less, eight hours a day at least, because I can’t spend too much at home anyway.
What happened will definitely change me, because I will be more careful about my diet. I was not eating enough. I used to eat once a day, in the evening, because I had no time. Even if I wanted to eat, I was always on the field, and when I was at the office, I was speaking to clients on the phone. The phone was driving me crazy, it would never stop ringing. I would grab something to eat and just as I sat down some client would come and I had to get up.
Otherwise, the disease does not discourage me, it makes me stronger.
* The patient’s name was modified upon her request.
Pulmonologist Cristina Popa, from the “Marius Nasta” Institute of Pulmonology, on the challenges faced by patients with multidrug-resistant tuberculosis.
Cristina Popa has been working as a physician in the multidrug-resistant and extensively drug-resistant tuberculosis patient ward of the “Marius Nasta” Institute of Pulmonology in Bucharest for over 11 years. She has seen, examined and spoken to thousands of patients and the couch in her office is not where she invites her colleagues to sit during coffee breaks, but where she has piled up files of patients hospitalised in this ward, separated by green notes labelled “A,” “B”…, “S,” “T,” “V”.
– I am aware of my human limits and, to be honest, for me it would be very hard to take this kind of treatment… No matter how careful I may be, I would certainly skip doses now and then.
She voices her thoughts out loud. She understands very well how hard it is for her patients to take between 12 and 30 pills every day, with side effects that are difficult to bear.
– We try to help the patients to go through with the treatment until it is completed. Ignorance is the most important factor that makes you stop the treatment, because if you don’t know what tuberculosis is, you most certainly will not give very much importance to the drug dose that you have to take that day. They tell themselves: It’s fine, now I feel better anyway, what’s the point in taking any more pills today?
Out of the energy given by the passion for her profession, dr. Cristina Popa finds resources to convince the patients to complete the treatment, for their own good, and she does this day after day. She explains to them, for their understanding, everything about tuberculosis, about the effects that skipping the doses has, not only on them, as persons who have the illness, but on their families as well. And when a patient observes his or her treatment thoroughly, she is even happier than the patient, because she knows, better than anyone, that this is the key for the cure.
– We are a team here, and we try to explain things to the patients. Besides me, there is the nurse on duty on the day in question, and the psychologist. The nurses’ role is very important, because, in the end, a repetitive message is better understood. The psychologist is also very important, because of the meetings she organises with the patients. The message is conveyed differently by a psychologist and the fact that we give the same information in several ways is the most important of all. We give the patients a clear idea about the disease, and this idea sticks with them.
With all the joint efforts of the team of specialists, from time to time there are cases of patients who do not really pay heed to what they say. These are the patients who, several months or years later, return to the hospital beds of the pulmonology wards and restart the treatment, but this time it is a much tougher treatment, with even more drugs, for a form of tuberculosis that in the meantime has become much more resistant to the treatment than in the initial phase.
– Some do not take their treatment constantly and, after they are discharged from the hospital, they continue not taking it. Two months later they are assessed as “treatment discontinuation” but I would assess them as “treatment default.” When the treatment is provided for free and you do not care about it, I think that you, the patient, are most to blame.
Each death caused by the discontinuation or default of the treatment convinces her once again that she must do everything possible to help the patients take their medication as recommended by their attending physician. To some of the them, she talks about cases of patients who, sometime after beginning the medication, are already fit to return to work and still do not abandon their treatment.
– In my opinion, there are cases when you can take the treatment and go to work. There are patients who can do that, and I encourage it. They feel better when they feel useful and get back to their previous active life. I believe that mental balance can do wonders for the cure. They tell themselves: “I take the treatment and feel able to live as I did before the disease.”
Tuberculosis, as all specialists keep repeating, and as dr. Cristina Popa keeps repeating as well, is not a poverty disease, it does not pick and choose. Hospitalised patients include booth poor and wealthy people, blue-collars and engineers, homeless and managers or businessmen.
– It’s hard to sketch a profile of the multidrug-resistant patient now. I could not say that they are necessarily people living on outskirts of the society, that they do not have a home or are deprived of food… Generally, around 50% of the patients are persons who know and have lived with someone who had this disease and they took the tuberculosis bacillus from that person. Later on, unfortunately, due to a personal trauma or because they went through an extraordinarily stressful event or they lost someone in their family, the bacillus was activated and they developed this disease.
In case of suspected tuberculosis, the first hospital stay is, according to the classical approach, of around three months, during which the patient undergoes medical investigations. Only at the end of those three months and based on the laboratory test results we can know for certain whether the patient is contagious or not, whether he or she has sensitive tuberculosis, multidrug-resistant tuberculosis (MDR TB) or extensive multidrug-resistant tuberculosis (XDR TB).
– The major shock is when they find out that they must complete two years of treatment, in the case of MDR tuberculosis. Two years is a lot. Most patients are men and, in the majority of cases their knowledge is limited and their level of education is low, which often leads to carelessness in complying with the treatment. Most of them have graduated only middle or vocational school. There is a relatively limited number of patients with university degrees, who give importance to the detailed information about the disease and to the correct attitude towards a treatment that is by no means easy, but which may cure them.
Staying in hospital for three months, far from home, from family and from friends is another difficult challenge for the patients. Moreover, if the patient does not become negative, meaning that he or she continues to be contagious, hospital stay may be extended, sometimes even up to six months.
– Many patients at “Marius Nasta” are people who come to Bucharest because they are strongly motivated to go through with this treatment and therefore are capable to deal with this long stay away from their families. They are patients who either had a previous tuberculosis episode or received other treatments.
And, dr. Cristina Popa adds, there is yet another obstacle for the early detection of tuberculosis.
– Most patients who come to the emergency ward do so because they experienced abundant sweating, not because they have been coughing for two weeks, they have lost weight and feel more tired in the afternoon. They attribute these symptoms to smoking, stress or working too hard, and this delays the diagnosis.
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