Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.
Sorin Neacșu have had multidrug rezistant tuberculosis (XDR-TB). He ies cured now and he tells us his story without hesitation, and full of emotions. Even there are four years since he was declared cured, he is still impressed by the people that saved him, people from the Association for MDR-TB Patients Support.
One of the project activities is the updating of the national tuberculosis patient database which includes data on all patients, from diagnosis to follow-up, monitoring, assessment, treatment course, etc., say the specialists at the “Marius Nasta” Institute of Pulmonology. It is a sort of patient register, explains the Institute’s manager, dr. Gilda Popescu. “The database is useful for the medical system because we practically know exactly what happens with each patient who starts an anti-TB treatment and, year after year, we have information about that patient in the system. A patient is registered only once, but there are data about everything that happens to him or her – all the hospital admissions, everything,” she details.
This database is also filled out and updated with data on the patients with multidrug-resistant and extensively drug-resistant tuberculosis. The information is extremely useful, and very important reports may be drawn up based on it. “This is an upgrade of the existing database which was done by extending the information, including a development based on the modern diagnostic component, such as liquid media and molecular diagnostic, and the component related to therapies other than the standard therapy for sensitive tuberculosis. This database is also useful for international reporting,” dr. Victor Spînu added.
Moreover, specialists explain, in addition to diagnostic-related data, the database includes other patient information, such as the place of residence, age, developments in their condition, etc. Many things may be found if all this is analysed. For example, why there are more patients in a certain county, why certain patients do not heal, whether the situation is in any way related to age or social status, or whether it is related to another factor.
The establishment of a trust relationship between the physician and the patient is extremely important, say the specialists in the TB hospitals and dispensaries, and another important aspect is the effective communication between the two,” psychologists who work with the patients diagnosed with tuberculosis emphasize. Every Thursday, at the “Marius Nasta” Institute of Pulmonology in Bucharest, psychologist Andreea Dumitrescu meets with the patients hospitalised in the ward where those with multidrug-resistant tuberculosis (MDR-TB) are treated.
“Blind man’s buff in pairs” – game and mirror
On Thursdays, before lunch, several pairs of footsteps can be heard getting out of the hospital rooms and gathering in the hallway on the first floor of the hospital wing, where the meeting usually takes place. When the patients do not have any specific questions or certain topics to propose for discussion, Andreea Dumitrescu comes up with exercises that may be useful for them. One of the exercises Andreea often proposes for these meetings is “Blind man’s buff in pairs,” the purpose of which is to increase trust in others. In Andreea’s approach, the exercise seeks to increase patients’ trust in the physician who treats them.
This time, ten patients are present at the meeting. A middle-aged man, a talkative young man, a shy girl, a jovial gentleman, an elegant-looking lady, some of them just walking around, other sitting thoughtfully on the chairs. Andreea’s voice brings them together. “First, we have some fun, then we talk.” The chairs are placed randomly along the corridor and the patients form pairs of two.
Some are hesitant, others can’t find a partner. Jokes are thrown around, to hide the unease, while Andreea reveals what they have to do: one of the two team members will be blindfolded, spun round a few times, then guided by his or her teammate through the “maze” of chairs to the other end. The basic rule: the blindfolded person must only be guided verbally. “You are not allowed to take them by the hand, pull them by the sleeve or push them from behind, nothing. The blindfolded person must be helped get out of the maze only by verbal indications. Right, left, one step forward and so on.” “I want to be blindfolded,” says Constantin, the talkative young man, throwing himself into the game. Very tall and slightly hunch-backed, with a punk cut that gives him a somewhat dangerous look, he soon goes from jokes to irritation, he speaks a lot and has trouble concentrating. He is not very popular. “Who wants to work with Constantin?” Andreea asks. After a couple of moments during which the others look away, Constantin designates Marin: “You.”
The path to healing
Andreea ties the scarf around Constantin’s eyes, she spins him round and explains again to Marin what he has to do. Everybody quiets down and Marin’s voice becomes clear. “One step forward. Stop! Right… left… more to the left… that’s it, that’s good. Now go straight ahead…” Constantin walks slower than ever, he keeps asking questions, he is anxious and irritated. He only relies on what he hears, and Marin’s indications are too rare. He spends too much time thinking. “Right, slowly, that’s it…, a little to the left…” And Constantin permanently prompts him: “Like this?”, “What now?”, “Say something!”, “Do I keep going?”. He takes bigger and bigger steps only to get it over with sooner. Two minutes have passed and he’s only halfway through the maze when he touches a chair with his foot. He turns into a little tornado and starts throwing the chairs around, he pulls out the scarf from around his eyes and grumbles at Marin: “I’ve already touched two chairs!” He has not made it through the maze. Now it’s his turn to guide Marin. Blindfolded, Marin barely nears a chair when Constantin drives him on: “Come on, come on, straight, straight, that’s it, come on!” He pulls him by the sleeve, “Come on, man!”, Andreea corrects him and he returns to the verbal guidance rule. “To this side, come on!”, he shows Marin, forgetting that Marin is blindfolded. “Over here, come on!” Everybody is laughing and Marin finishes in less than a minute, but he was guided with the hands too, not just verbally. The exercise ends with a patient being guided by Andreea herself, because the rest of the patients refuse to play. This is either because they have just taken their treatment and feel dizzy from the drugs, or because they are embarrassed and afraid not to make wrong moves through the maze of chairs. Florin was spun round and now is ready to listen. “Take one step forward. Stop. Take one step to the left. One step forward. Half a step to the right. Two steps forward.” After a minute and a half, Florin has made it through to the other side of the maze without having touched a chair. Guidance is essential, but observing the instructions is as well, and Florin did exactly as was told.
“Now, let’s talk. What did you think about all this?”, Andreea asks. The chairs are rearranged in a circle. “Children’s play,” someone says. Florin says something essential: “You let yourself be guided by someone you trust, about whom you know precisely that they would not guide you wrong.” Constantin gets the idea and immediately apologizes: “I got angry because… with all that right, left, right, left, I thought that he was not guiding me properly.” I was feeling disoriented because my team partner did not know how to guide me. He was saying ‘over here, over there’ but I could not orient myself after what he was saying,” another patient says.
Trust – the key element
What do they, the patients, think was the purpose of this exercise? Patience, self-control, orientation, some say. A lady who did not participate because the treatment she is under for MDR has affected her hearing and she must lip-read, says it was relaxing. From a corner, a gentleman, white-haired despite his age, only speaks out when asked: trust. A test for the trust in your team partner. The others seem to agree. Yes, this exercise showed them how important is the trust of the blindfolded in the partner who has more information than he or she does. Mr. Nicolescu adds: “How to make the other trust what you say, and, if you are the one who is guided, to know how to do what the other member of the team tells you to do”.
Andreea Dumitrescu encourages them to tell their opinions and then she clears things up: “If I told you that I did this exercise to illustrate the relationship you have with your physician throughout the treatment, what would you think? What if you were to think that, yes, that’s about how the relationship I have with my pulmonologist looks like and this is the route I have to take together with him or her?” Silence. Everybody retraces in their own mind the route through the maze and compares it with their situation as a patient. During the exercise, Constantin did not trust Marin, he got angry and abandoned the path through the maze. As a patient, he did not trust his physician and abandoned his treatment several times, which is why he went from sensitive TB to MDR. Marin instead observes the treatment and the physician’s indications totally, just as he observed the indications for going through the maze. Florin also complies with the treatment. The shy young woman, Marcela, declares that she has blind trust in her physician and that she sees him as her only chance to heal.
“The important thing is to get to the other end”
After they understood the purpose of the exercise very well, the patients must also understand what each of the two partners – patient and physician – must do for the treatment to end well and for the patient to heal. Because, as the psychologists working with the patients explained, each of the two persons involved has his or her share of responsibility.
Therefore, Andreea asks, what did they think was key in getting to the end of the road together? “The fact that you can trust someone, another person,” says Florin. “Overcoming obstacles,” says Mr. Nicolescu. Marcela follows strictly what her physician tells her and she noticed that this was visible in the results of her tests which have continued to improve. “It was worth the effort of staying here, in the hospital, for so long – I’ve completed five months this week…” “Yes,” Mr. Nicolescu agrees. “But you as a patient also must have a little will of your own to complete this treatment, to keep in mind the doctor’s recommendations. I, for example, have taken my treatment now and I feel, I don’t know… a little unwell. But this is the treatment. It’s not the first time I take it. I have taken another treatment scheme before, but I go on, I have to heal!”
Speaking from the patient’s side, they find it easy to analyse the situation. But what if they were in the shoes of the person who guided them, in the physician’s shoes? One moment of thinking and the answer comes shortly: the important thing is how they communicate, whether one is understood by the other. “The patient must trust the physician, and the physician must trust the patient,” Florin explains. “And the patients must trust themselves to complete the treatment. Walking around among the chairs, blindfolded, guided only by someone telling you what to do means having great trust in the person guiding you. They bumped into chairs now and then, so no matter how much trust you have, you will certainly run into some doubts along the way, doubts in yourself, in the one who guides you, there is hardship… And then the important thing is to get to the other end.”
Communication – the key to success
“But what do you think,” Andreea asks, “what would the physician need in order to guide the patient better?” “As far as the physician-patient relationship is concerned, I have seen that there is quite a lot of effort being spent for us. The physician understands us, you understand us and the others do as well, and I have a satisfaction… and I have trust, I really have trust,” says Marin.
“It’s as if you let your life in someone’s hands. That person with special training who can bring you to the shore. But you must trust that person, and that person must know how to collaborate with you. Because if you don’t trust…,” Ms. Petrescu adds.
In fact, the physician-patient relationship is the key element for treatment success. And for the physician-patient relationship to be satisfying, both must communicate effectively. “This guidance is like the path through life. If you make mistakes…,” Mr. Ilie leaves his sentence hanging. “Maybe a patient is a little thick-brained or something and then the physician must explain things two or three times. And, as a patient, to help the communication with the physician, to understand things better, you must know what to ask.” “Of course,” Mr. Nicolescu adds. “And if you want to get out of this well, you must comply with what your doctor tells you. If he or she tells you left and you go right, everything amounts to nothing.”
“So – Andreea Dumitrescu concludes –, the exercise was meant to show, on the one hand, that there is a relationship between you and the physician who takes care of you, and, on the other hand, that this relationship depends on how you communicate. The more you pay attention to what is indicated to you, the more chances you have to understand and, as a result, to comply with those indications. No matter how knowledgeable and skilful your physician is, the outcome of his or her work is also up to you, and up to the relationship you have with him or her. The relationship is one of collaboration, and you, the patient, have the highest interest. The physician has all the best intentions and it is very important to have a good relationship with your physician so that, together, you can complete the treatment and heal. In order for the physician to cure you, you yourself must be receptive, and for you to be receptive, the physician must communicate clearly, so that you to understand what you have to do. Ask questions! You have several months, from the time you are admitted, to ask everything that is unclear and everything you want to know.”
* The names of the patients have been changed, upon their request.
The Association for the Support of Patients with Multidrug-Resistant Tuberculosis (ASPTMR), in partnership with LHL International Tuberculosis Foundation, a patient organisation in Norway, performs within the project activities related to the training of medical practitioners and TB patient workers to help them develop very effective communication skills in a very short time, in five minutes.
Also, they built a network of peer supporters (most of them former TB patients who now help those who undergo treatment) for patients with multidrug-resistant tuberculosis, and also edited a brochure which will serve as the basic tool for the provision of information to TB patients. We have details about all these from Cătălina Constantin (photo), the ASPTMR chairwoman.
– How did you come up with the idea for these joint courses for specialists and patients?
– The medical environment of the TB facilities network has a certain background of beliefs and assumptions. To maximize the impact of the information, we placed these people in different situations. We did not organise courses for physicians and, separately, for nurses or other categories. Instead, we organised joint courses for physicians, nurses, former patients, psychologists… several types of specialists who work with TB patients. Being such a heterogenous group, regardless of the information and beliefs they came with, and because they were involved in interactive activities, they managed to understand the situation better form the others’ perspective as well. In this way, all participants were able to change their perspective. The physicians were able to better put themselves in the place of patients, and the patients in the place of physicians and so on. Because the main problem is that many times they do not communicate well. Medical practitioners expect patients to understand the information the first time they are told, and patients expect the physician to be somewhere on a pedestal and do not see him or her as a person capable of understanding, while social workers and psychologists are often seen as outsiders in the care setting and so on. When they were all brought together, they understood each other, they saw how the situation looks like when being in the other’s shoes and they managed to leave the training sessions with another perspective, which I hope helps them. I have met a great deal of people in the medical system who suffer from burnout, who, emotionally, are on the brink of failure and who feel overwhelmed by the fact that they also have to do things that are of no help to the patient, a lot of administrative paperwork… In these courses, we also teach them strategies for dealing with stress, one of them being to do mindfulness meditation to maintain their focus.
– What is the biggest problem that physicians point out to in the relationship with the patient and what is the biggest problem that patients point out to in the relationship with the physician? Do these two problems meet at any point?
– They certainly do meet. Physicians blame the lack of time, which I think is also caused by the fact that they are not sufficiently trained by the system that should have trained them with regard to time management, stress management, effective communication, conveying the message and delivering the information to the patient in doses. From the patients’ perspective, when they receive the tuberculosis diagnostic, they stop hearing pretty much everything else they are told. Then, there is the change that intervenes after they are discharged from hospital and start outpatient care; all of a sudden, patients feel removed from an environment where they felt safe. In the hospital, if they got sick, there was always someone there, the nurse, the attendant. When the patients are sent home, the feelings are divided. On the one hand, they are happy that they are out of the hospital and are together with their families, and, on the other hand, they are anxious and worried because they have to come into contact with a new medical team, they must face – alone – assumed or possible health problems that may appear because of the treatment. If you speak to them and explain organisational aspects, the documents and papers that they have to obtain, if you speak to them about the notions related to what tuberculosis means, how it is treated and what its symptoms are, they get so tired at a certain point because of all that information they have to remember, that they have a mental block and are unable to follow you from that point on.
I believe that, in many cases, the physician judges things from his or her level of understanding, which is very high, without realising that the patients’ level of understanding, regardless of their training, is very seriously influenced by their state of mind. The information delivered to the patients must be structured according to the priority: what is the most important thing I have to convey to the patients when they come to take their treatment or have their tests done? Each time the patient comes, the physician or the nurse or the psychologist, depending on each case, must provide some more information.
– So, the patient must be provided with information gradually, to be able to assimilate it.
– Yes. And to be repeated the important information. Otherwise, the message doesn’t get through. Often, there are situations when the patients do not understand the importance of hospitalisation and they say: “What do you mean, I spend Christmas in hospital?” And the physician does not always understand this attitude, because he or she thinks from the perspective of the responsible person. They think it is normal to want to stay in hospital during Christmas, in order to be at home and healthy the next Christmas.
– Because the physician has infinitely more information than the patient?
– Not only because of that, but also because the physician is outside the patient’s problem. That patient only sees the fact that, during the holidays, at a time of maximum importance to him or her, they are taken away from their family and held in a place where they are given a tag – the tag of a patient suffering from a severe disease called tuberculosis. And at this point there is need of a little more empathy on the part of the medical practitioners and of more understanding for the patient’s needs other than the physical ones.
– You have developed a patient-friendly brochure together with the LHL in Norway.
– This brochure has been compiled with the help of several tuberculosis patients and is dedicated exclusively to tuberculosis patients. Its aim is to ensure accurate and proper information, to facilitate understanding and increase patient responsibility, resulting in treatment adherence, as well as to help in the patient’s relationship with the physician. We made a first variant of the brochure and then we tested it with other patients, asking them whether they understood the information, whether they had anything to add to what was included in it, whether they wanted other things in the brochure in terms of form and content. Based on their suggestions, we developed the second variant of the brochure and gave it to other tuberculosis patients. We again made changes and now we hope it is a useful tool that the patients may keep with them. We want it to provide simple, clear and relevant information which may be understood by all the people who read it, regardless of the physical or mental state they are in at that particular moment. Every time they have questions or have not understood something, or when they are unable to remember what the physician told them, they may read about it in the brochure, which in this way is useful to the physicians as well, helping them communicate.
– How will these brochures reach the patients?
– We will print out 10 000 copies which we will distribute in the National Tuberculosis Prevention, Surveillance and Control Programme (PNPSCT) network. We have a partnership with the National Penitentiaries Agency (ANP). There are more tuberculosis patients, not just 10 000, but the brochure may be multiplied at any time.
– You have another interesting activity, the patient support network.
– Yes, we have recently organised a support network for patients with extensively drug-resistant tuberculosis (XDR), a network of peer supporters formed of volunteers who ensure the psychological support for the patients who undergo treatment, in particular for the Group 5 medicines.
– What are Group 5 medicines?
– Group 5 medicines are medicines that cannot be found in Romania, they cannot be obtained through the Romanian medical system, they are bought exclusively from abroad and are new medicines in the treatment of tuberculosis, still under assessment. These are very expensive medicines, with a very big impact on the body, with side effects that are difficult to bear by the patients. This is also why patients who take Group 5 medicines are admitted for longer periods of time compared to those who take the other types of treatments. Not all XDR patients can take these medicines, because they are only administered under certain conditions and only the physician may say whether a patient is eligible for taking this treatment.
– Where do you recruit volunteers for this network from?
– There are many persons who want to work in an NGO. Psychologists, social workers… And, because we provide services for patients with MDR-TB and not only, we also recruited volunteers from among such patients – persons who are willing to work, who can cope with this kind of service. We have trained them by providing communication courses and interventions based on their needs, such as interventions related to self-esteem, trust and so on. Being peer supporters helps these patients or former patients heal themselves not so much from the disease, but from the experience. With former patients, the disease has been cured, but the experience has not, and this helps them reintegrate by helping others, it is like a gradual desensitisation. They expose themselves to the problem without in fact being in that problem and then they realise that they are past the phase in which the people they support are now, they realise that they had resources and now are able to help others… It helps them heal on the inside.
– How many peer supporters do you have now in the project and how many patients do they work with?
– We have 15 peer supporters working with 45 patients. There are psychologists who work on patient evaluation, we have the diagnostic – with the patient’s and the physician’s consent –, we have the treatment and the adjacent diagnostics so that we may get an image that is as complete as possible on that patient’s suffering. We perform a social evaluation, to see whether the patient needs help in terms of various aspects, and we also perform a psychological evaluation. The psychological evaluation looks at the patient’s degree of motivation to follow the treatment, at the patient’s limits and resources. Patients are divided according to this overall image and according to the profile of the volunteers we have in the network. Among the 45 patients evaluated and introduced in the peer support work, apart from two who died, all the others are treatment-adherent. Because, as one of the former patients said, you do not heal from tuberculosis when you complete the treatment, but when your soul heals as well.
I have TB and I will heal. Tuberculosis is curable! Remember: Anyone may get infected with the tuberculosis microbe! If you follow the doctor’s or the medical practitioner’s advice and take your medicines as prescribed, you will heal from tuberculosis.
Dear patients, this brochure is for the patients with tuberculosis (TB). Here, you will find information on the disease and its treatment, and advice on how you may face this disease.
This is the beginning of the brochure for tuberculosis patients edited under this project. It was developed with the help of patients, to help patients. This pocket booklet is an extremely useful tool for persons diagnosed with TB, because it provides them with information on the disease, the treatment and the implications it has, in an accessible and friendly language.
The stories of TB patients are different but they all reveal the same fears that, most of the times, are the effect of a lack of information. Sorin Neacșu, a former patient with extensively drug-resistant tuberculosis (XDR-TB), the most complicated form of tuberculosis, told his story and welcomed the publication of the brochure: “The fact that I received the information I needed helped me understand the disease and saved me. This is why I was glad when I found out that an information material was being drawn up for tuberculosis patients and I wanted to take part in its development, I wanted to help. I am glad that patients will have a valuable tool to help them cope with the fear of the disease, the lack of information and the untrue rumours. Healing is a road. All the patients start at the beginning of this road and walk on it, some more easily, others more difficultly. The important thing is to know the path you are taking. This is why it’s good to be accurately informed.”
10,000 copies will be printed and distributed under the project to the specialists in the National Tuberculosis Prevention, Surveillance and Control Programme (NTPSCP) network, and from them to the patients. The brochure directly addresses the patients, proving its usefulness from the first pages:
“How can you use this brochure? Read the material to find out the most important information on tuberculosis and how to face the disease and the problems you may have to deal with. You can share the brochure with other persons and comment upon it with them (medical practitioners, your friends, family, other patients). You will feel safer when you find out what tuberculosis is, how it is transmitted and how it is treated. You will also be able to discuss various aspects about TB with other persons. A more open attitude towards the disease helps people be better informed with regard to it. When those around you understand more about TB, they will feel less scared.”
When they find out they have tuberculosis, most of the patients know nothing or almost nothing about this disease, and the only sources of information available to them are the physician and the Internet. As explained by the psychologists who work with people with TB, when the patients are told the diagnostic, they have a mental block and are unable to remember everything the doctor tells them, which is why, after the shock of the diagnostic fades, they start looking for information on the Internet. The risk of reading inaccurate information on the Internet is very high, which is why the best thing is that the correct information, controlled by physicians, reaches the patients. A patient who is well and correctly informed has better chances to adhere to the treatment and therefore to heal. Therefore, the brochure is also useful for the medical practitioners, who will be able to offer patients this tool comprising accurate information.
“This brochure is also useful to the specialists who work in the healthcare field. Because it eases their work. The medical staff delivers information to the patients, but how do we realize whether we give the patients the information they need? We too developed a brochure of this kind in Norway, six years ago. Medical practitioners say that after they receive this brochure, the patients are less scared, have more information and ask questions. From these questions, medical practitioners understand what the needs of each patient are. This is why I believe that this brochure is almost magical, if used properly. Surely, it can be handed to the patient with a simple ‘Look, here’s something to read.’ But the idea is that this brochure should be a communication tool. The doctor should say: ‘Look, today, we talked about the treatment you will undergo for six months. Here, you can read about it, you can also find questions that other patients asked the doctors and the answers to these questions. Maybe you will want to ask me questions too at the following visit. It also includes information you probably don’t need right now, but at a certain point you will need it and you will want to ask questions. So, keep this brochure.’ This is how we want it to be used. This is how this brochure becomes magical,” explains Mona Drage (photo), the chairwoman of LHL International Tuberculosis Foundation, at the launch of the brochure.
The booklet will be available in English soon.
Tens of locals in the village of Răzvani, the town of Lehliu-Gară, Călărași County, received information about tuberculosis during the information, education and communication caravan held on 10 June 2016 by the community nurse Mariana Corina Niculae and the local sanitary mediator Beattris Mihaela Iamandi. “Have you heard about TB?” asks the loud voice of the nurse in the huge village community centre.Several women cross themselves, a villager asks if it is related to asthma, another woman asks if children who get a cold develop TB.
The nurse and the mediator briefly explain to them what tuberculosis is, how it is transmitted, how it is treated, and tells them that the treatment must be followed strictly and that it is provided for free. The participants are now a little more at ease and start listening attentively. They find out that it is good for them to go to the doctor’s if they have been coughing for several weeks, if they lose a lot of weight over a short period of time, if they sweat during the night even when the weather is not hot, if they feel very tired almost all the time, without physical effort. “There are no TB cases in Răzvani Village,” says the nurse, who, at the end of the session, hands out T-shirts, caps and backpacks to the participants, together with leaflets containing basic, clearly worded and readable TB information.
The IEC session in Răzvani is the 106th IEC Caravan organised by the Centre for Health Policies and Services Foundation (CPSS) within the project RO 19.01 – “The Improvement of the health of the Romanian population through enhanced tuberculosis control.” The project seeks to provide information to approximately 10,000 people in the selected communities with regard to TB (transmission, prevention, signs and symptoms, treatment, the importance of accessing the primary healthcare services, etc.). Overall, 5,479 persons have been informed about tuberculosis during the 105 caravans organised since the beginning of June.
The second county coordinator training session within the WP7 component – “Provision of integrated community support interventions in order to prevent TB spread in poor communities and to improve treatment adherence in TB cases” – of the project RO 19.01 “The Improvement of the health of the Romanian population through enhanced tuberculosis control,” entitled “Tuberculosis – course for community nurses and sanitary mediators,” was organised on 13-14 May at the “Marius Nasta” Institute of Pulmonology in Bucharest and focused on the streamlining of the implementing methodology and working procedures used, in order to improve the services provided to TB patients, as well as on the finding of solutions to the problems identified in the 6 counties where this work package is being implemented, by the county TB coordinators and community nurses.
“My colleagues in the counties are of the opinion that family doctors should be more seriously involved in the relation with the patients undergoing TB treatment, that they should be stimulated to participate in the efforts to increase patient adherence to the treatment. Another aspect is the need to employ community nurses, particularly in the rural area and in those villages and communes where there are no family doctors. At present, In Romania there are around 1,350 community nurses and over 2,800 communes that have approximately 13,000 villages. The community medical assistance law is currently being drawn up, we will see how this field is regulated in the end,” explains Dr. Dana Fărcășanu, executive chairperson of the Centre for Health Policies and Services Foundation (CPPS) and coordinator of the WP7 work package, which is being implemented by the CPSS.
The 10 participants in the course evaluated the project implementation status and the degree of achievement of the indicators at the end of April 2016, and planned the activity for the following period in terms of directly observed treatment provision (DOT) and the organisation of the following information-education-communication (IEC) caravans.
“In general, the practice is as follows: patients come once a month to the TB dispensaries and they take their medicines for the month in question. Nobody monitors on a permanent basis whether each patient takes his or her medicines in accordance with the treatment chart. When directly observed treatment (DOT) is applied, the DOT supporter stays next to the patient when he or she actually swallows the drugs. As a result, we have correct patient monitoring and the certainty that they continue to be adherent to the treatment,” says Andreea Turcitu, project monitoring and evaluation assistant on behalf of the CPSS. “The provision of directly observed treatment (DOT) within this project component began in January, and the first evaluations relevant in terms of effectiveness compared to the usual practice will be obtainable within around six months of actual implementation of DOT provision.” By the end of April, approximately 320 patients have been enrolled and received directly observed treatment under the WP7 component in the 6 implementing counties: Botoșani, Neamț, Gorj, Dolj, Giurgiu and Călărași, with around 160 DOT supporters involved.
The projects conducted at present with funding from the Norway Grants 2009-2014 (RO 19.01) and from the Global Fund to Fight AIDS, Tuberculosis and Malaria “are pilot-projects that are able to validate effective DOT methods and may represent models for their possible nationwide extension, and this is one of the project’s added values,” Dr. Fărcășanu adds. “Another added value is the large amount of important information gathered in the field: what works, what does not work, what must be changed and how in order to have national DOT coverage. These types of courses and meetings are necessary and I would be very happy if they were organised more frequently, because they are a good opportunity to discuss and find solutions to the problems identified in the field.”
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.
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.
A functional network of laboratories has been put in place under the project “The Improvement of the Health of the Romanian Population through Enhanced Tuberculosis Control,” financed by the Norway Grants 2009-2014. As a result, multidrug-resistant tuberculosis is more rapidly diagnosed. Dr. Gilda Popescu, manager of the “Marius Nasta” Institute of Pulmonology, gave us an insight into these improvements.
What did this project mean for the national tuberculosis control programme?
For us, the project run with the Norwegian funds is vital for ensuring TB control in Romania, because it meant the establishment of the national network of bacteriological laboratories that will ensure a more rapid diagnosis of tuberculosis and, more importantly, of chemo-resistances. With this project we now have 18 laboratories equipped with everything that means modern technology, from liquid phenotypic methods that facilitate cultures and DSTs, to genetic methods that identify bacterial DNA and rifampicin resistance, and to complex methods that we use to detect drug resistance to antibiotics and second-line anti-TB drugs.
In addition to the technical equipment provided for these laboratories, we also benefitted from staff training. Practical training sessions were organised on how to use the new equipment and how to obtain the results in order to identify the bacteria and drug resistances.
Also, one of the most important activities is ensuring the correct and complete treatment regimens for patients with multidrug resistance. Approximately 300 patients with complete anti-TB regimens have already been enrolled for treatment under this project. In addition to the drugs, we also ensure treatment adherence with the help of our MDR coordinators, who observe the treatment of multidrug-resistant patients.
As far as tuberculosis is concerned, the multidrug resistant patients are the real public health issue. Drug-sensitive tuberculosis is a controlled phenomenon, although the number of cases in Romania is very high – Romania is the country with the highest incidence in the European Union. We have a very good detection rate, one of the highest in the European Union, and a treatment success rate of 86% for drug sensitive cases treated. Multidrug resistance cases continue to be the real problem, as the detection rate is 52% and, in addition, the treatment success rate is very low, 32% – the lowest in the WHO Europe region.
It’s here that we have to act in order to reduce the increased incidence and deal with this public health issue. This is why we need rapid diagnosis and we perform it in the TB microbiology laboratories; we need efficient medication and we are providing it under this project whereby 1,000 patients should receive complete treatment regimens.
Will the laboratory network be sustainable after the project is completed?
The promise made by the Ministry and by the Government, who approved the Tuberculosis Control Strategy 2016 – 2020 by Government Decision, includes assurances that the budget will be available. In fact, what the support from the Ministry will effectively have to cover starting from 2016 are the rapid diagnosis methods and the correct treatment, because the other activities that we perform – monitoring, assessment, epidemiological surveillance investigations – do not entail very high costs. These rapid diagnosis methods and the correct treatment are the very expensive part. In autumn last year, we talked to representatives of the European Pulmonology Society about the rapid diagnosis and they were particularly pleased to hear that Romania now has all this equipment that enables us to perform rapid diagnosis. We would have liked for each county laboratory plus the six in the sectors of Bucharest, meaning 47 laboratories, to be equipped with everything that means rapid technology – both liquid phenotypic methods and genetic TB diagnosis methods. In addition to these, the laboratories of penitentiary hospitals should have been provided with equipment as well, in particular since the incidence of tuberculosis in penitentiaries remains at least six times higher than in the general population, which would call for special rapid diagnosis and correct treatment measures.
What does rapid diagnosis mean and what is the difference from the methods used before?
Until a little over a year, we were only able to use the conventional method – microscopy, culture and drug sensitivity tests. According to the WHO definition, the confirmation of a TB case is a confirmation obtained after a culture test, or if we refer to the ECDC (e.n. – European Centre for Disease Control), the confirmation is given by a rapid genetic method and the positive microscopy. In order to be able to do this, we need rapid technology. The conventional method means a complete diagnostic that is obtained as follows: culture in 60 days, then another 30 days for obtaining the DST. Practically we were waiting for around 100 days until the results were communicated. At present, the GeneXpert method solves this problem in two hours and the liquid phenotypic methods take another 21 days. In the diagnosis of a disease like tuberculosis, there is a considerable difference between 100 days and 21 days. For example, in the past, we would have a patient with tuberculosis but we would realise 100 days later that the drugs initially administered were not all of them effective because the bacillus had already become resistant to at least 1 or 2 drugs, and therefore we needed to rethink the therapeutic formula. For the patient, this means isolation, removal from the family environment, absence from work, financial burden, and these aspects can be significantly reduced and improved with the application of these rapid diagnosis methods.
Did the new laboratory network also require new jobs?
No, on the contrary, what did increase was the workload because before we would only use the conventional method and now we are also using the rapid methods, which means extra work. The workload increased approximately three times for the 18 functional laboratories. We proposed the Ministry to consider additional workforce and we showed that the previously established work norms, set according to the number of beds, had to be reassessed. The analysis concerning the staff required should be based on workload, not on the number of beds.
A training session dedicated to nurses and community mediators took place in Bucharest on 2 and 3 October. The course was structured in two parts, one for TB experts and the other for community nurses in charge with detecting TB cases, providing directly observed treatment (DOT) and with the proper functioning, at local level, of the TB specialists and nurses team.
The course was addressed to the county teams made of one TB professional (doctor) and a community nurse. 12 people attended the training (6 TB experts and 6 community nurses) in the 6 counties where activities under the Work Package 7 will be implemented: Botosani, Neamt, Gorj, Dolj, Calarasi and Giurgiu.
The participants trained will organize similar training sessions in their counties of origin, where they will teach community nurses and health mediators about Tuberculosis (screening, treatment, DOT, social incentives for DOT patients). The teams will be responsible for organizing information-education-communication (IEC) caravans, with the support of local authorities and the community nurses and mediators they will train.
All 6 training sessions will be organised in the counties, by the end of this year.
Many patients who have been discharged from hospital and continue their treatment for multidrug-resistant tuberculosis in outpatient settings or their caregivers come at the end of each month to the TB dispensaries to receive the social vouchers worth 80 Lei per month. In August, we went to the Outpatient Health Facility on Salcâmilor Street to ask patients how they cope with their disease.
Ionuț Dumitru, 41, retired due to disease.
“Every day I experience the same symptoms, vertigo, nausea. When it’s hot outside, it’s terrible. The only thing that motivates me to keep taking the treatment is the fear of giving the disease to someone else, in particular at home. For me, the effects of the treatment are a nightmare. And there, in the hospital, I saw fellow patients throwing the drugs away. I’m better, because I’m at home I don’t have to put up with the stress in the hospital. My income is 460 Lei, it’s not enough for anything. With the vouchers I can buy about 15 % of all that I need.”
Mihaela Andrei, 47, mother of a 20-year old woman diagnosed with MDR TB in June
“On Easter, in April, she coughed and told me she felt a taste of blood in her mouth. We both thought that it was from a tooth, because otherwise she had no symptoms. Then, a month later, the fever started. We don’t know where she took it from, it’s true that she used the metro and the trolley bus to go to college, but she always hanged around kids from good families. She is in great pain, her whole body hurts, especially the soles of her feet. We use the vouchers for vegetables and fruits. Every day I make her beet, celery or carrot juices. Her emotional state is poor, she is always crying. Now she is in her third college year but she missed the summer exam session and, as a result, she lost her state-subsidised tuition.”
Mirela Stamate, 43, wife of patient diagnosed with MDR for the second time
“He has had this problem for many years, ever since he was in prison, which is where he got sick in the first place. The disease relapsed seven years ago because his immune system is weak. He underwent surgery for stomach cancer and he also has two herniated discs. I was also ill twice, but my system is better and I haven’t had problems that needed medication. We have two pensions that together amount to 600 lei. We work sometimes, I clean people’s houses and he repairs sockets or water taps from time to time. We also have a 15-year old daughter. We keep on giving her immuno-stimulants and medicines so that she doesn’t get sick. For us, the vouchers are really helpful.”
*The names in this issue are fictional; we decided to change them at the patients’ request.
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.
Interview with dr. Victor Olsavszky, Head of the WHO Country Office in Romania
In August 2015, under the project called Improving the Health Status of the Romanian Population in Romania, by Increasing Tuberculosis Control, a contract was signed whereby the World Health Organisation will ensure the technical assistance for the National Tuberculosis Prevention, Surveillance and Control Programme (NTPSCP). A large part of the assistance actions complete and consolidate the project activities.
In order to find out more about the priorities of the WHO mission and about the concrete working methods, we talked to dr. Victor Olsavszky, the Head of the World Health Organisation Country Office in Romania.
Dr. Olsavszky, what aspects of tuberculosis control in Romania should represent the top priorities of the National Tuberculosis Prevention, Surveillance and Control Programme at the moment?
Everything is a priority. Above all, however, we believe that we must place the correct and timely treatment of tuberculosis, particullary of multidrug-and extensively drug-resistant tuberculosis. We say this because it is obvious that, in order to make progress, we have to contain the reservoir. And this reservoir is the infected patient. We know that we have good surveillance, the program in place is very well organised, but the data from the surveillance and from the programme assessment show that there are shortcomings regarding the treatment. This means that the patient is not diagnosed on time. This is what the new project does. It brings the necessary diagnostic instruments, namely those that enable us to make a quick diagnostic instead of waiting for two or three months, as it has been the case so far, before we are able to realise whether the tuberculosis is sensitive or resistant to treatment. Ant then, when this is implemented, one can very quickly shift to a better and more efficient treatment, which means that, at least for the multidrug-resistant tuberculosis cases, the cure percentage can be increased (at this time it is somewhere below 25 %), and this can reduce the flood. It is true that as far as the sensitive tuberculosis is concerned, things are much better. Practically, in this case, the cure rate is already high, but it must nevertheless be increased, because this is where the multidrug-resistant tuberculosis cases originate from (because of treatment interruptions).
So, in short, we could say that the correct, complete and timely treatment is the priority.
What does the WHO assistance to the NTPSCP consist of for the following period?
There are five main lines. Technical assistance has been constant so far as well, even before these projects and financial assistance from donors existed. The most important part goes to the DOT (directly observed treatment). If DOT means that the treatment takes place under the direct supervision of the doctor, of the nurse and so on, we apply the same principle to the Ministry of Health. Meaning that we directly observe what the ministry does in relation to the NTPSCP. In other words, before, we would come every six months and directly observe what was happening. And this will continue.
In particular, under these projects, we will provide assistance for the development of Guidelines for the management of tuberculosis cases in children. In this area, we have already contributed with a donation of paediatric formula drugs, which were not available on the Romanian market. It is natural that they were not available here because, since the market is small, no producer was interested in bringing them. This being the case, we came with this donation, with this support. Then, there will be the Clinical Guidelines for the cases of tuberculosis and HIV – meaning that we will provide technical support for the development of these guidelines. The third important aspect – because we consider that the involvement of the primary care is essential – is that we will conduct an analysis of the financing and compensation of activities at the level of the family doctor. Family doctors should be involved in the project. The fourth important thing is related to the streamlining of the use of resources and is related to the centralised procurement of drugs. Of course, we have centralised procurement now as well, but we consider that this procedure can be improved, and this is related to the fifth important component, what we call governance, or let’s call it the management of the entire programme. Because NTPSCP is based on an entire network that is organised and functions both in hospitals, and in TB dispensaries – sure, the aim is to also involve the family doctor – a series of dysfunctions have been noted with regard to hierarchies and management and, in addition, with regard to the financing mechanisms, at least those from the Ministry of Health budget. This is about not having resources, or that the Ministry of Health does not make these resources available, but in the sense that their use is not optimal, because of bureaucratic procedures which make things move very slowly. This will contribute to all the other aspects that I mentioned above and will solve the number one priority – the rapid and efficient treatment.
How will you actually work, so that the national decision-makers implement the recommendations and information in the reports and guidelines of the technical assistance missions?
First of all, we will do what we have also been doing so far: every six months we come and see what has happened. But most importantly, we will also come with the experience of other countries. Because, sure, Romania is at the top when it comes to cases of multidrug-resistant tuberculosis, but the Baltic Countries come very close to our country. There, MDR-TB is a public health priority and we can show what has been done there in this regard. Secondly, in terms of how the project is conceived with financing from donors, it takes into account what we call direct involvement of the beneficiary, the direct involvement of the decision-maker.
In other words, nothing can be done outside the decision-making chain or outside the system in which the programme must operate.
Interview with Mr. Răzvan Vulcănescu, Undersecretary of State within the Ministry of Health
This year, the Romanian Government passed the National Tuberculosis Control Strategy, a commendable decision that was received with optimism by all stakeholders. The strategy’s objectives, to be reached by 2020, aim mainly to ensure universal access to rapid diagnostic methods, to diagnose at least 85% of all the estimated cases of sensitive and multidrug-resistant tuberculosis (MDR-TB), to successfully treat at least 90% of the new cases and at least 85% of re-treatments, to successfully treat 75% of the multidrug-resistant tuberculosis cases, to decrease the disease incidence and to improve the healthcare system capacity to control tuberculosis.
The Ministry of Health is currently the Operator of the “Public Health Initiatives” programme, through which the Norway Grants 2009 – 2014 finance the project Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control. The project’s major components concern the increase of the rapid diagnostic capacity for multidrug-resistant tuberculosis, the provision of the correct, complete and quality treatment for MDR-TB patients, measures for maintaining treatment compliance and, last but not least, the development of a functional network of TB laboratories and facilities countrywide, with modern equipment and trained staff, in order to enhance the capacity for tuberculosis control.
Mr. Răzvan Vulcănescu, Undersecretary of State within the Ministry of Health, has given us an interview in which he spoke about the role of this project in the context of the National Tuberculosis Control Strategy and the way in which the institution he represents will ensure the sustainability of the implemented interventions.
So, mister Undersecretary, what is the role of the project Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control in the implementation of the National TB Control Strategy 2015-2020?
Thank you for addressing this subject in this interview, one that we also consider very actual and very important, and we appreciate the collaboration we have with the Marius Nasta Institute and its partners in this project. Before I answer your question, I would like to make a little introduction, because just like this project comes to support the National Tuberculosis Control Strategy, the National Tuberculosis Control Strategy is part of our Health Strategy called Health for Prosperity, which we passed last year, by Government Decision, an initiative that has been built over the course of several years. I started this initiative, as coordinator of the working group at that time (2012), which aimed at bringing together the entire medical community responsible in Romania in order to build this health strategy to which we could all contribute and make sure it would help us solve the major health problems we are facing. I was very glad that the final outcome was this strategy, which was passed at the end of 2014 by the Government of Romania. It is very important to remember that it is part of the Partnership Agreement with the European Union for the programme period 2014 – 2020 and that it seeks to ensure the necessary funding for a complementary financing to what is provided by the Government, and the funding necessary for us to be able to control the major public health problems that we are facing. Obviously, after the National Health Strategy was passed, the National Tuberculosis Control Strategy followed and it was precisely in order to support this strategy that we were very happy with the existence of the Norway Grants that we tried to use in order to cover those very gaps that were not covered by our Government funds, or as a supplement to the allocated money. So, there are elements of complementarity, elements of similarity, but, of course, our main purpose is to seek and support, in all our initiatives, the control of tuberculosis in Romania.
What are the plans of the Ministry of Health in order to ensure the sustainability of the interventions implemented in Romania through the two projects which, at this moment, come to support the Strategy? (I’m talking about the two major national projects: Project RO 19.01, financed by the Norway Grants, and ROM-T-RAA, financed by the Global Fund to Fight AIDS, Tuberculosis and Malaria. Under these two projects, Romania receives support for ensuring the rapid and qualitative diagnostic, the correct, continuous and complete treatment for the patients with MDR/XDRTB, the start of the reform in relation to the outpatient care of TB patients through social support services, in order to maintain compliance, the early detection of TB cases among vulnerable populations – the homeless and the injecting drugs users.
What you have mentioned are in fact the objectives that we would like to reach by implementing these projects. In fact through the two projects, Romania receives support for ensuring rapid and qualitative diagnostic and continuous and complete treatment for TB and MDR-TB cases, practically the beginning of the reform of outpatient care for TB patients, through social support services, in order to maintain compliance and actively detect TB cases among those vulnerable populations (here we can think of the homeless or people of a certain ethnic origin, or users of injecting drugs). The interventions financed from the Norway Grants and from other international funds as well, will be taken over and will be ensured the amounts and financing resources in accordance with the National Tuberculosis Control Strategy.
I would also like to present a part of the concrete results that we have already obtained through the implementation of the two projects. Specifically, speaking about the activities set out in each project, we can say that, halfway through, we already have palpable results that motivate us to take these projects further as they have been carried out so far. First of all, with regards to the strengthening of the capacity to control the TB epidemics, I can tell you that more than one third of the pulmonology medical staff has been trained on TB control since the beginning of the project. The total number is 600 professionals. Furthermore, if we consider the activity related to the strengthening of the rapid diagnostic capacity for TB and MDR TB cases and the increase of the detection rate when using rapid diagnostic method that are standardised in terms of quality, the methods that we used until now will be doubled by much more efficient methods and, in the following two months, at most, along with the existent tests, we will also have available the GeneXpert tests that can give the diagnostic for TB and for Rifampicin resistance. This test can give a result in two hours. Also, since April 2015, over 6600 persons have been tested, of which 1643 were detected with tuberculosis and 171 with multidrug-resistant tuberculosis. So, we already see real results and we begin to identify and treat patients from the risk categories that we have on record. Also, starting this month –September 2015 – we will also have available under the project the vehicles that will carry the samples from the peripheral laboratories to the regional and national reference laboratories, in order to ensure a correct and rapid diagnostic.
We can go further and look at the activity related to the provision of continuous, complete and quality treatment for 1000 patients with TB and MDR TB, and I can confirm to you that so far, over 200 patients have been enrolled in the treatment cohort. These patients receive complete, continuous and quality treatment, in accordance with the identified resistances and, moreover, starting this month, the patients enrolled in this project will also receive a drug that has been approved by the World Health Organisation (editor’s note WHO) for the treatment of MDR TB. As for the provision of directly observed treatment and incentives for TB patients treated in outpatient care facilities, in order to increase treatment compliance, so far, around 440 TB patients with increased default risk treated in these facilities have received support in order to maintain treatment compliance. This means that over 80 % of them have continued to be compliant for a period of 4 months. This initiative is very important for us, because before we had to monitor them and each time we would lose track of them they would return in a more complicate stage of their condition, which also implied higher costs. So, it is very important that once the procedure is initiated for each identified patient, the procedure is continuous and focused in terms of the efforts that we all make in order to motivate them to stay with the treatment until there is a medical confirmation that the risk period has been surpassed entirely or even that the patient is completely cured.
Basically, all the activities are implemented according to the schedule and, at this point, approximately 45 % of the results initially planned for this time interval have already been achieved. This is an effort that has been assumed by both the Ministry of Health and the project management team within the ministry, which coordinates and monitors the entire activity of our partners in the system. It is an effort that we have assumed precisely in order to properly carry out the projects.
You talked earlier about the provision of funds for the sustainability of the activities. Have the sources of these funds been identified so far?
Yes, there are multiple sources and, of course, as we are nearing the end of the year, we must consider about the budget planning for next year, for 2016. Soon, all the aspects related to the budget law for the following period will begin to be discussed, and we will have much to say about how things stand at this point, given the experience we have gained with the implementation of these projects. The main idea and the idea that we are trying to focus on is, as I was telling you earlier, related to funding complementarity, so that we can have continuity in the provision of the funds. Also, for what the Government is unable to provide during a certain period of time, we have to make sure that there are other financing sources available that we can use for that period. However, there is support and openness from the Ministry of Finance as well, and it is very important for us that we are now able to show clear results. Because the Ministry of Finance is interested as well to see that these measures that we have undertaken lead to concrete results that justify the need to continue to fund these activities from the national budget.
In order to ensure the sustainability of the interventions financed from international funds, how will the Ministry of Health deal with the current constraints of the National Tuberculosis Control Programme, which are shown in the latest WHO / ECDC (European Centre for Disease Prevention and Control) assessment report? Among these, we mention only a few:
a.The updating of the C2 list of drugs with all the tuberculosis drugs necessary for the complete and correct treatment of MDR and XDR TB patients, in accordance with the WHO recommendation
b.The reorganisation of the laboratories in the NTPSCP network
c.The review of the financial payment mechanism for the NTPSCP programme (e.g. the payment per services instead of per invoices issued)
d.The review of the procurement procedure for drugs for TB patients
I appreciate your question in the context of the meeting that will take place next week, in Vilnius. It is the Annual WHO Congress, where I will represent Romania (I have also represented Romania on previous occasions). The World Health Organisation is very preoccupied with the eradication of tuberculosis worldwide, and is in particular concerned about Romania, but not only. Because there are states right know where we can speak of a relapse. And this happens precisely in the current context of the migration. Probably this will be a topic on the agenda of the talks next week – what happens in the context of the migration and in the context of the allocation of these categories of population to the European states, with all the implications that their health might have on the health of the population where they are to be relocated. So, tuberculosis is not only a health problem, it also has socioeconomic implications. As such, in order to improve and control tuberculosis in Romania, we need the involvement of each and every institution and organisation, as well as of the partners who have a say in what tuberculosis represents in Romania. I would like to say that, in accordance with the National Tuberculosis Control Strategy, the Ministry of Health and the National Tuberculosis Prevention, Surveillance and Control Programme will also benefit, under internationally funded projects, from technical assistance from the WHO, in addition to the European Financial Mechanism, the Norway Grants and the Global Fund. I will personally discuss these key aspects during the meetings next week, and they could become the topic of further talks with you, where I could present the latest elements resulted from the meeting that I will attend.
Thank you for giving us this interview.
Thank you for our collaboration in working to keep under control a disease that is challenging for us and that we are trying to eradicate.
At the end of March, 18 specialists from the national tuberculosis laboratories in Bucharest and Cluj and from bacteriology laboratories in Bacău, Constanța, Craiova, Timișoara and Sibiu were trained in using the MGIT960 rapid testing equipment. Within the project “Improving the Health Status of the Romanian Population through the Increase of the TB Control Capacity”, in Bucharest and Bisericani arrived two pieces of equipment which help the doctors find out in a few weeks if the tuberculosis is drug-resistant or not. Within the project, rapid diagnostic tests for testing 10,000 people will also be procured.
In Romania, the global TB incidence is the highest the European Union and one of the highest in the World Health Organization European Region. The good news is that incidence decreased, in the last 12 years, by almost 50%. In the present context of the illness spreading in our country, the coordinator of the TB Laboratory Working Group in Romania, Mrs. Daniela Homorodean, MD, chief of the laboratory within the „Leon Daniello” Clinical Pulmonology Hospital in Cluj-Napoca, says that several diagnostic methods are necessary, and the new equipment shall make the difference.
We asked Dr. Daniela Homorodean how the national laboratory network looks now, what are the challenges of the specialists’ activity and what will the new equipment bring. This is what she said for us:
“For the current situation in Romania, doing a microscopic exam for tuberculosis control is not enough. For a better surveillance of the endemic we need, for each patient, microscopic exam, as well as culture and drug sensitivity test. In the sputum we examine routinely for the pulmonary tuberculosis there must be 10,000 bacilli per millilitre of product, for us to be able to see one bacillus at the microscopic exam.
When bacilli appear, which we see coloured through special colorations at the microscopic exam, the lesions of the lung are quite advanced. Then, using other methods, we increase the chances to highlight the bacilli in early stages of the diseases, when the lesions are not so advanced. Thus, the chances of curing with less scars and lesions on the lung increase, because tuberculosis is a treatable infectious disease which can be cured. But, if the lesions are too extended, then it is cured through fibrosation, a scar-like tissue is formed. It is a fibrous tissue which doesn’t allow the lung to normally expand and relax. The bigger the lesions, the more extended is the fibrosis.
There are about 100 laboratories that diagnose and have as scope of work the bacteriologic diagnosis of tuberculosis, spread in all the counties. In each county there is a lab doing tuberculosis diagnosis. Starting with 2003, we began to run visits in the laboratory network and we selected some enthusiasts among the colleagues working in TB labs, good professionals, willing to participate in the control and guidance visits in the laboratories in the country. Immediately after we had the opportunity to accredit the laboratories according to the EU quality standards. Initially, 38 laboratories out of 50 proposed got accreditation, because only those met the criteria. Through the methods we’ve had so far, we got results after two or two and a half months, when we found out whether the germs eliminated by the patients were sensitive to the antimicrobials or resistant.
In eight regional laboratories and two national ones – Bucharest and Cluj – we have now the possibility to run genetic testing, in 24 or 48 ours, for the presence of the microbe in the sputum and the resistance of that microbe to the most powerful drugs – Isoniazid and Rifampicine. The resistance to these two drugs defines the multidrug-resistant TB. If the microbe is resistant to these two drugs, other substances, more powerful and more expensive, some of them with toxic effects, should be added to the treatment. It is best if, from the beginning, the patients accept the treatment so that the microbes not gain resistance, follow exactly the treatment without missing one single doze and not give up some of the drugs, because they think that three or four are too many. It is a big mistake, because from a treatable and curable disease, the person can develop a form difficult to treat and maybe impossible to cure. Then, such a non-compliant patient could make other people ill, and they will have since the beginning drug resistant tuberculosis. To find out about these cases as soon as possible, the genetic tests received through the Norwegian funds are essential. These are equipments which function with specific reagents and need special fit-up design. The reagents are procured also from Norwegian funds.
Through these projects, 9 cars shall be procured for the transport of products from the periphery to the diagnostic centres, so that by collecting the products we shall have rapid and quality diagnosis. It is not at all cost-efficient to keep a laboratory that only tests 3 sputa per day.
In 1999 we had other funding from the World Bank and five laboratories received the same equipment for doing culture on liquid media. Through that project, the laboratories had reagents for one year. Then, due to lack of funding, some of the laboratories stopped their activity, some others continued, but at a very low level, for serious forms.
We have to make sure that all the laboratories provide comparable diagnosis. The patients are quite mobile during the months or years of illness and go from one hospital to another. Or maybe they travel, get sick and get another set of tests. The results are compared with the previous bacteriological tests and they should be comparable, so that the monitoring can be correct and real and we can use the same scale and system of expressing results. I really like to believe that we had good results in the laboratories. It’s not a pleasure to work daily with sputum – not the best sight – but if you can deal with it and consider it a necessity, then you understand the relief of establishing a positive diagnosis and telling the patient that they have tuberculosis, not cancer. It is indeed, a relief.”
The non-reimbursable grants from public funds represent a real opportunity for the beneficiary countries, to address specific problems of the vulnerable communities, for which the country policies haven’t yet succeed, in some situations, to establish concrete measures. Furthermore, the development of several projects in public-private partnerships allows, through the non-reimbursable grants for the support and improvement of the measures included in the national strategies for the control or eradication of some diseases or for the improvement of the life quality of some groups at risk of social exclusion.
Until now, in Romania, only in the fields of human resources, health, and human rights, the non-reimbursable public funds supported the development and piloting, at national level, of some infrastructure of services specific for the people affected by diseases difficult to cure or chronic (diagnosis, specialized interventions etc.), gave way to the implementation of some training programs for different professional categories, were the basis of several research programs and the development of studies in fields uncovered in Romania (such as autism) or allowed the development of some information campaigns addressed to the general population on different diseases, non-discrimination campaigns or advocacy campaigns to improve the existing legislation regarding the rights of the people with disabilities and those affected by TB, HIV/AIDS, etc.
The benefits of the European funding or those granted by the government of some European countries are priceless.
Maybe that is exactly why their management at national level and the reporting systems for the reimbursement of the expenditure might try to complete this balance that the external funding re-establishes in countries like Romania. The modern technology and the electronic systems of data storage allow today to replace the paper support with electronic support which is without any doubt equally ecologic and durable. More and more campaigns try nowadays to educate the population in the spirit of a proper use of electronic devices, avoiding hard storage of the information.
The current systems of reporting to the national management authorities for the international funding, related to expenditure reimbursement, is based largely on data presentation and storage on paper, leading to impressive quantities of files, ring-binders and paper sheets for each monthly report, for each project, everything in up to 3 copies for each document. Only for the project “Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control”for the January – April 2015 reporting, the data storage needed 70 ring-binders, each having an average 400 A4 sheets of paper. Considering that each A4 sheet of paper weighs 5 grams (80 gr/sqm), after doing the math we conclude that only the content of 70 ring-binders, for one periodical reporting, weighs 140 kg of paper (without adding the weight of the ring-binders).
Of course, at a first glance the situation might create opportunities to access new financing lines for solutions to protect the forests and local ecosystem.
Nonetheless, at a more realistic assessment of the situation, there is a need to reconsider and change the reporting system (regarding data storage), with higher focus on using modern filing technology and information storage. No doubt, it’s a win-win situation, for the national management authorities, project implementers and general population who, although far away from these details, breathe the air which Romanian forests help to breath.
The change can come from the first decision maker who understands its benefits.
Marian Istrate is 41 years old, lives in Bucharest and in April 2015 was hospitalized at the “Marius Nasta” Pulmonology Institute in Bucharest, with the diagnostic of multidrug resistant tuberculosis. He left at home his wife and their 19 years old daughter who just had the bachelor degree exam, worried that there are chances he would have given them the Koch bacillus. In an interview conducted in his room from “Marius Nasta” Institute, Istrate told us how he ended up being diagnosed with tuberculosis and what his hopes for the future are.
“I don’t know, I have several problems, and the most important is Crohn’s disease, which I have been fighting for 10 years now. (ed.: Chron’s is a chronic inflammatory disease, localized in the digestive tract wall). Because of this disease I had a stroke, trombophlebitis, there were several things linked to each other. Then some biologic treatments for the Chron’s disease appeared and the doctors proposed to follow them.
Thus, as I ended up doing all sorts of investigations in hospitals, in 2007 they discovered I had pleurisy. Then, in 2013, they noticed a spot on the right superior lobe of the lungs and the doctors told me I had TB. I followed 1st line treatment, except that the spot didn’t become larger, but it didn’t shrink also. And I thought to myself: if I cut my finger, then it swallows, it gets infected or it heals. But in my case the spot remained there, even after the treatment.
I took the TB treatment for 6 months, plus the biologic treatment for my disease and it went ok. I used to go to Fundeni, but I wasn’t hospitalized, I was going twice a month and get a dose every two weeks. And at the end of last year they changed my treatment with an intravenous one. I had only two doses and during New Years Eve, in December 2014, I had fever, chills. It passed after 2-3 days or so and, after about half a month, I thought I should go to the hospital to see what’s going on.
I had an X-ray and they told me I had a tumour. And I had to have a bronchoscopy done afterwards and it didn’t turn out to be TB, cancer, or any tumour, but some sort of pneumonia. I was put for 20 days on Cefort iv treatment, and in the sputum sample didn’t appear anything. In March, they put me on 1st line treatment, but the spot remained. By end of April, a lady doctor calls me, telling they did the drug sensitivity test and that it turned out multidrug resistant tuberculosis. “Wouldn’t I better go and buy a coffin?” I said to myself.
On 29 April I was hospitalized. It is suspected that I took it (ed. the bacillus) from somewhere in a hospital. At least 2 month I’ll stay here at “Nasta”. To my surprise, I coped with the treatment, although I was afraid I couldn’t do it. As a patient here, one begins to get used with the idea of the disease, of tuberculosis, of severe diagnostic. I still have bad nausea, sometimes I even feel sick to drink water. It has to pass, you end up saying to yourself.”
Marian Istrate is only one of the thousands of patients with multidrug-resistant tuberculosis in Romania, to whom the lack of high performance methods of rapid and correct diagnosis of the disease made loose precious time. Two years – the time when Marian was incorrectly treated for sensitive tuberculosis – represent a period when multidrug resistant tuberculosis would have been cured, with the proper and timely initiated medication.
Access to rapid diagnostic, thanks to the high-end equipment procured through the project “Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control” allows receiving the diagnostic in very short time (from few hours up to few days) and beginning the correct treatment, offering the patients like Marian Istrate the chance to be cured and have a normal life.
*Marian Istrate is a fictional name; we decided to change it at the patient’s request.
Starting with March 2015, 1,000 people with multidrug resistant tuberculosis shall receive complete, continuous and quality treatment. By the end of June, 139 MDR TB patients were enrolled countrywide and receive treatment within the project “Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control”.
The doctors in the local tuberculosis dispensaries monitor the health status of the patients enrolled in the program, thus helping them not to give up the treatment. We asked Dr Ariadna Petronela Fildan, MDR coordinator in Constanţa county, which are the advantages of this integrated system of patients treatment. Medical sciences PhD and associated professor at the Faculty of Medicine of the Ovidius Univerity, Dr. Fildan has been a pulmonology doctor at the Constanţa Pulmonology Clinical Hospital starting with 2008.
In this project, what does patient-centred approach mean?
The core of the project is the patient, everything – from human to material resources –gravitating around him, aiming to heal the patient and contain the spread of the disease. Once the multidrug-resistant tuberculosis diagnostic confirmed, the fight with the disease begins, fight which is based on well established rules. First of all, the patient is informed by the attending doctor about the new diagnostic methods, the therapeutic options, the duration, advantages and possible complications of the therapy, concurrently underlying the fact that the disease can be defeated if the treatment if followed on a continuous basis, without interruption for the entire duration indicated by the doctor. One shall try to motivate the patient in order to enter the program, bringing as supreme argument the cure and the chance to a normal life. Each patient represents a specific case; they don’t come only with a diagnostic and a disease we must treat, but with an emotional, cultural and social background which we must consider when trying to motivate the patient. We try to answer to all the questions related to the disease and treatment, to provide them as much information as possible, in a clear way, tailored to the personal level of understating.
How important is the medical care accompanied by psychological care, how does this actually take place in hospitals? Which are the advantages and what is the difference between the new possibilities and what was done before?
Evidently, the psychological support is very important; a trained person can find the methods adequate to each patient to motivate them not to give up the treatment. In fact, the most important aspects in the success of a treatment are, first and foremost, the compliance and ensuring continuity. Psychological counselling at the initiation of the treatment but also during the entire course, when complications – some quite difficult to deal with and to control – might appear, is a major contributor to the therapeutic success. Unfortunately, not all the hospitals have trained staff and in this situation is our hospital in Constanţa as well. To bridge the gap, the discussions with the patient take place with the participation of the attending doctor, the chief of department or the chief of dispensary (according to the case, if the patient is hospitalized or in ambulatory), the medical director and the program coordinator. The advantages we have at this moment are considerable, starting with the fact that we can have an MDR TB diagnostic in a few hours, compared to a few months, through access to the newest molecular diagnostic methods, continuing with access to modern therapy, ensuring continuity, the treatment regimens being those established by the MDR commission, according to the international guidelines.
Social support: what is the role of the social vouchers?
The role of these vouchers is a motivational one. It has been observed that providing monthly “bonuses” – if the patient came to the doctor and was given the treatment in the presence of the doctor or nurse – increases the treatment compliance rate. As it is very well known, many of the patients face serious material difficulties and thus any help is welcome.
What feedback do you have from your patients, regarding this approach?
The patients are satisfied because they have the continuous treatment ensured, have an additional chance, by being included in this program, and understand the importance of the correct administration, without interruption, of the medication, because this is the only way they can be cured.
How many patients are enrolled in this program in Constanța?
Currently there are five patients enrolled for complete regimens and eleven patients enrolled for social support in order to increase their compliance to treatment. We hope as many as possible will be accepted.
What is the situation in the county regarding tuberculosis?
In Constanţa County, the tuberculosis incidence decreased constantly in the past 10 years, from the 3rd place at national level to the 12th place. Last year 634 cases of tuberculosis, new cases and relapses were notified, representing an incidence of 87.6 versus 89.9 per 100,000 inhabitants, in 2013. 38 cases were notified in children. What we noticed for the first half of this year is the high number of severe cases registered in our hospital, extended, milliary forms, meningo-encephalitis. Until now we had 13 deaths due to tuberculosis, which probably can be explained by the long latent period between the occurrence of the symptoms and the visit to the doctor.
Grațiela Chiriac is the chief of the pulmonology laboratory in Bacău, one of the 8 laboratories equipped with high-end technology through the project “Improving the Health Status of the Romanian Population in Romania by Increasing Tuberculosis Control”. Dr Chiriac is laboratory doctor and member of the Laboratory Working Group of the National Tuberculosis Prevention, Surveillance and Control Program. We asked her what would be the advantages of the new equipment of the laboratory network.
How does rapid diagnosis help the patient?
The patient’s benefit is considerable, since they can receive the diagnostic early, together with conclusive information about the sensitivity of the infectious strain. Thus, the patient has the opportunity of a treatment initiated early and tailored according to the result of the drug sensitivity test. In these circumstances, the doctors take the right decisions regarding the treatment and the development of chemo-resistance is avoided, as it would make the cases difficult to treat. The liquid media diagnostic method implies inoculation in a liquid media tube, with a standardized technique, and placing it in the equipment which shall monitor the culture. The positive result, which basically confirms the disease, is obtained in 7 – 14 days, and the final result in 42 days. Comparing with the method on solid media, the benefit is obvious: the time to obtain the positive culture is of 7 – 14 days, versus 21 – 60 days; a complete result, culture and drug sensitivity test in 21 days, versus 50 days or even 4 months.
What does this new technology mean for the doctors working in the field?
For the clinicians, the purpose of the activity within the tuberculosis network is to initiate an adequate treatment, as soon as possible, and for the doctors in the laboratories to establish a correct diagnostic, as soon as possible. Correct diagnostic means the isolation of the strain which determines the disease, identifying it as belonging to the Tuberculosis Complex, testing and determining the sensitivity to drugs.
How many patients were diagnosed so far, with this new method, in the laboratory you run?
By the end of June 2015, we had processed through this method 151 culture samples and sensitivity tests. Bacău is among the counties with a tuberculosis incidence above the country average and with an increased number of re-treatments (ed.: relapses, defaults or failures to previous treatments). That is why is necessary to do cultures on liquid media, to ensure a rapid result. In 2008, we considered the idea of the semi-automated MGIT, at that moment being a routine method in Europe. It was a really special moment, although the method is quite time consuming (each tube was manually passed through the fluorescence reader). The automated method we use now, which indicates with sound and visual signals the positive state of one tube, is beyond comparison, even if it took 7 years to get to this point.
165 doctors and nurses from the pulmonology wards countrywide have attended training courses on tuberculosis epidemiology, rapid diagnostic methods for multidrug-resistant tuberculosis and the correct treatment, by the end of June 2015. Seven courses were organised in Timişoara, Sibiu, Ploieşti, Constanţa, Piteşti and Cluj, and 20 more training sessions shall be organized in other cities of the country by the end of the project.
The trainees had the chance to learn new things about the disease incidence and modern diagnosis, “information they don’t have access to in day to day medical activity”, as Dr Florin Sologiuc says, consultant at the Centre for Health Policies and Services Foundation, one of the organizations in charge with the training. One of the trainers, Doctor Marilena Crişan, specialized in paediatric tuberculosis, also stated that the added value of the trainings is given by the fact that they provide the doctors and nurses the opportunity to thoroughly discuss the news in the area of tuberculosis. “Although tuberculosis seems like a simple disease, it has been constantly surprising for more than 200 years. The trainings are very interesting because they are interactive, and the participants have access to the new technologies. We intend to discuss with the doctors about the cases and none of the training participants is marginalized; we want them to be engaged.”
The pulmonology network in Romania is made of more than 700 doctors and over 2000 nurses. A series of training courses on tuberculosis was organized during 2004 – 2014, especially within the projects funded by the Global Fund to Fight against HIV/AIDS, Tuberculosis and Malaria, but now, due to the increase of multidrug-resistant tuberculosis cases at global level and following the revision of the World Health Organization (WHO) guidelines on treatment and patient management, the training of the pulmonology doctors became a priority.
“I am not as strong as before, yet I drag myself along”
Ioana (45) comes from Mediaș and she suffers from extensive resistant tuberculosis. In March, she was hospitalized along with her daughter (14) also a MDR suspect. Should the suspicion be confirmed, her daughter will become one of the patients included in the project “Improving the Health Status of the Romanian Population through the Increase of the TB Control Capacity”.
“Last year I spent 9 months here. I am unfit to work, but I am glad I can cook, clean and help my daughter. We can barely make ends meet from my pension and her survivor’s benefit. We limit ourselves to what we have. We live in a studio where we have what we need. We are poor, but we can afford to pay for the heating and to buy food.
When I was 19 years old, I suffered from drug-sensitive tuberculosis. I have had two relapses since then and, in the third, the doctors diagnosed me with MDR. When I was little, I had once a sore throat so severe that I could no longer speak, and when I enrolled at the university, they did some X-rays. ‘No file, no university – the hospital’, they told me. After me and my husband divorced, I had a relapse, my immune system was weakened, and I keep telling myself it was nerve-related.
My eldest boy’s father, who also has TB, died in 1995 of TB and we still do not know what kind of TB it was. One of my husband’s brothers also died of TB. His mother and sister had no idea what drugs he was taking. When the doctor learned that I had MDR-TB, he told me that I got it from my husband.
He hardly followed his treatment.
I had a 12 hours a day job and I neglected my diet. I worked as a clothes manufacturer. I finished post-secondary school, I was in the Technical Quality Control for a while and then I was somewhat of a shift manager. I have not worked since 2007. Until 2008, I was on first-line therapy. It was in 2008 that the doctors in Mediaş considered testing me to see whether I was resistant to drugs. The tests showed I was resistant to two drugs and they kept me there for another 4 months. When my child got sick, I did not leave him in Mediaş, instead I took him to Sibiu and later to Bucharest.
His condition is improving.
I am feeling so-so now. I am not as strong as before, yet I drag myself along. My daughter is in the 8th grade and she wants to go to the military high school so she had to do some tests. There was something wrong with her lungs. The doctors still do not know what it is, but they suspect she got it from us.
We were not alarmed because she was feeling well and ate well. She is a good student and she wants to study mathematics and computer science, however she can no longer enrol at the military high school. We have been in hospital for almost a month now, but we are to go home soon.
When I was ill and I could not manage on my own, my mother and my daughter would help me, and we would help each other. We are used to living on our own, just the two of us.
“Everything starts with you”
Simona (37) is an economist in Bucharest and she was told she has MDR-TB almost two months ago. She has been in hospital ever since.
“I got TB from my brother-in-law, who is also hospitalized here.
It started with pneumonia – I started coughing, so I went to the doctor and he told me I had an untreated pneumonia. I underwent treatment with antibiotics; then the doctor did an X-ray and told me it looked better. I told him I had come for my pneumonia but also because I had a case of TB in the family. He said that if I had had TB, the antibiotic he had given me would not have had any effect.
The next time I came for an X-ray, the doctor told me he had the impression there was something else there, that it was no longer pneumonia. One week later, I got a call from the clinic and I was told to come urgently. The DST had come out with tuberculosis.
I have never been ill, neither have I taken drugs, underwent treatment or been admitted to any hospital. I had a good immune system, I eat healthy, I do not smoke and I do not drink coffee or alcohol. In 37 years, I have never been in hospital. If I felt ill, I would let the system fight on its own, and I would not take drugs.
Sunday before I left for the hospital, I cried a lot. Everything was new for me: from an active and healthy person, suddenly I had to be hospitalized.
At first, it was difficult in the hospital; I would wake up in a state of panic in the morning, when I had to take the medication. I felt fear and rejection inside. It is not easy because there are days when I simply cannot walk and I can barely articulate words. There are days and days…
I have to be strong and take it easy. You need to encourage yourself and learn to do things on your own. Everything starts with you.”
One thousand patients detected with multidrug resistant tuberculosis receive quality treatment, starting with March. At the same time, once they go home, they, together with other 500 patients (who receive treatment through governmental financing) shall be monitored by the doctors from the local TB dispensaries, so that they don’t discontinue the therapy. In order to help them cope with the new situation which involves many costs (from those related to healthy nutrition, to support the body, to those related to regular checks which imply travelling to the doctor), all the 1500 patients shall receive, starting with May 2015, monthly social tickets of 80 lei, the main goal being to help them follow the correct administration of anti-TB treatment.
Last year in Romania there have been diagnosed 14,938 TB cases; 12,562 new patients, and 2,376 patients were relapse cases. 449 were cases of multidrug resistant TB (MDR – when two anti-TB drugs cannot generate a response from the illness) and 36 extensive resistant (XDR – when more than 4 anti-TB drugs cannot fight the disease).
One of the biggest challenges of the multidrug resistant TB, either MDR or XDR, is the treatment, taken continuously and consistently. Some of the sensitive tuberculosis relapses can turn into multidrug resistant TB, if the patient didn’t take the drugs according to the treatment regimen and on the duration prescribed by the doctor. The treatment side-effects can be various: from vomiting, bone aches and headaches, up to hearing impairment. There are days, towards the end of the treatment, when some patients feel good and decide on their own to give up the medicines or start taking them irregularly. Thus, the few months of treatment become useless and the risks to relapse or to turn into a more aggressive form increase.
Cristina Popa, pulmonology doctor at the “Marius Nasta” Pulmonology Institute in Bucharest says that “the patients should know that they must continue the treatment, if not for them, then for those around them, to prevent spreading the disease to others”.
This time, the treatment is associated with a control system. In each county there will be one coordinator who shall collaborate with the doctors in all TB dispensaries in the county who are responsible for the MDR patients. “The DOT supporters are the medical staff or any other person trained in the administration under direct observation of the complete and correct anti-TB treatment. These can be nurses, community nurses or even the legal representatives of the patients”, says Iuliana Sîrbu, Romanian Angel Appeal Foundation, coordinator of one of the work packages within the project “Improving the Health Status of the Romanian Population through the Increase of the TB Control Capacity”.
In the MDR ward of the “Marius Nasta” Pulmonology Institute in Bucharest, about 30 patients have been enrolled since the beginning of March, while in Bisericani MDR Centre another 20 patients who receive treatment and who shall be monitored once they are discharged. This activity can be considered the most important of the project because, beside the TB treatment provided, there was a need to supervise its administration, but also for social incentives for the patients, support without which there is a risk to decrease the adherence to this difficult and long-term treatment.
The activities of the project are developed in line with the international TB control strategies, of which we mention: addressing the multidrug resistant tuberculosis in poor and vulnerable groups and ensuring standardized treatment, with the monitoring and support for the patients during the treatment.”
Between 19 and 22 March, in Bucharest, over 20 pulmonology doctors were trained in TB control, within the project “Improving the Health Status of the Romanian Population through the Increase of the TB Control Capacity”, financed through the Norwegian Grants 2009-2014 within the Program RO 19 – Public Health Initiatives, developed by the Ministry of Health.
The doctors participating at the course held on mid-March were trained in rapid diagnosis and received information on TB epidemiology (worldwide and in Romania) and epidemiology survey. After this course, they will become trainers and shall train, starting with April, 600 doctors and nurses in the country.
Adriana Socaci, a medical doctor from Timişoara and coordinator of the National TB Program in Timiş county, says that the notions learned at the training sessions bring news regarding rapid diagnosis methods which, during last year, reduced the time for TB diagnosis from a few months to a few hours. Mr. Florin Sologiuc, MD, consultant for the Centre for Health Policies and Services Foundation, one of the training organisers, told us that he wishes that, at the end of the 30 training sessions in the country, the doctors and nurses “will be informed about the new diagnostic and treatment methods, will know how to use them, who to investigate and who not, so that the new equipment procured within the project can be efficiently used.”
During the second part of February 2015, the 2015 – 2020 National Tuberculosis Control Strategy was endorsed by Government Ordinance. The legal document aims at reducing the incidence and mortality through TB, by ensuring prevention, detection, diagnostic, treatment and treatment adherence services, according to the World Health Organization (WHO) recommendations.
The development of the National Tuberculosis Control Strategy as coordinated by the Ministry of Health, with assistance from the World Health Organization, and the working group was formed of experts from national and international institutions and organizations, such as “Marius Nasta” Institute of Pulmonology, “Prof. Dr. Matei Balș” National Institute of Infectious Diseases, Romanian Angel Appeal Foundation, the Association for the MDR TB Patients Support.
Among the specific objectives of the National Tuberculosis Control Strategy to be met by 2020, are the following:
Other results estimated to be reached after the implementation of the Strategy:
According to the news published on the Internet website of the Government, “the endorsement of the National TB Control Strategy makes possible to mobilize resources from the European structural funds during 2014-2020 and from other European non-reimbursable funds. It is foreseen that the Strategy shall be funded by: 145 million lei from structural funds from the 2014-2020 fiscal period, 46 million lei from funds donated by Norway, 37 million from the Global Fund to Fight against HIV/AIDS, Tuberculosis and Malaria, allocations from the state budget, other reimbursable and non-reimbursable funds. The total budget of the 2015-2020 Strategy for the diagnostic, treatment, labs equipment, surveillance activities and human resources is up to 1,571 billion lei.”
The National Tuberculosis Control Strategy aims at ensuring the conditions to eradicate TB as a public health problem in Romania, by 2050.
The service procurement procedure for the organization of training courses for the staff of the Technical Assistance and Management Unit of the National Tuberculosis Prevention, Surveillance and Control Programme (PNPSCT) has been completed. The contract with the service provider was signed in December 2014 and now the Romanian Angel Appeal Foundation is working to prepare the training sessions.
In the following period, 15 persons from the PNPSCT Technical Assistance and Management Unit will be trained, so that the National Tuberculosis Control Programme may have better capacity for the management of medicine procurement and distribution, but also for fundraising, project management, monitoring, assessment and reporting.
Four training sessions will be organised in relation to the procurement of medicines from the Global Drug Facility of the WHO/StopTB partnership and the distribution chain management, as well as in relation to financial management, monitoring, assessment and reporting. The professionals who will be trained are part of the medical and management staff of the Marius Nasta Institute of Pulmonology in Bucharest.
Both during the training, and throughout the project period, the Romanian Angel Appeal Foundation, who is the owner of the working package on the capacity-building of the PNPSCT Technical Assistance Unit, will provide permanent assistance and operating support for the UTAM staff.
“We would like that the members of the UATM team, through the courses that we will deliver over the following period, consolidate their knowledge and necessary skills in order to be able to continue to attract projects and the funding needed for the strengthening of the National Tuberculosis Control Programme. Our courses are generally seen as interactive and dynamic and we hope that they will also be a useful and pleasant experience for the PNPSCT UATM team.” Silvia Asandi, Director of the RAA Foundation.
The team of the Centre for Health Policies and Services Foundation (CPSS) is currently preparing a series of training courses for both the medical staff in the national pulmonology network, and the community nurses and sanitary mediators.
“We are very glad that CPSS’ over 10 years of experience in the organisation of training courses in the field of tuberculosis control will be tapped into by this important project! The involvement of community workers and of the communities in the control of tuberculosis is a prerequisite for the success of a national programme.” Dr. Dana Fărcășanu, CPSS Executive Chairperson.
As such, training courses are currently being prepared on medicine management, the control and surveillance of the tuberculosis infection, DOT and tuberculosis prevention education.
The training courses on medicine management, the control and surveillance of TB infection address 600 doctors and nurses all over the country. The training courses begin in March this year and are expected to be conducted until March 2016.
The training courses on direct observation treatment (DOT) and tuberculosis prevention education begin in April. 70 community nurses and sanitary mediators will acquire basic knowledge in the field of tuberculosis in order to provide DOT and inform the population regarding tuberculosis. The end beneficiaries of these training courses will be 1000 TB patients from 50 poor rural communities, who will be offered support during their treatment by community nurses and sanitary mediators. Also, 10,000 people from these communities, including Roma, will benefit from information and education sessions on tuberculosis prevention held by the community nurses and sanitary mediators trained through this project.
The rapid diagnosis of a resistant form of tuberculosis is essential for the patient to be able to benefit from the most efficient treatment and to be cured. The classical methods for diagnosis and for testing the susceptibility to anti-tuberculosis medication may take between 21 days and 3 months. During all this time, the Romanian doctors and patients must wait until the patient’s treatment can be determined, and this delay is dangerous for both the patient and the community, because a person suffering from tuberculosis who is not undergoing the correct treatment is contagious and may spread the disease to close persons (family, colleagues, friends). On the other hand, the administration of a treatment that is not appropriate for the form of tuberculosis the patient has may favour the development of an even more resistant form of TB.
At the end of February 2015, the procurement of LPA and MGIT equipment was completed for the endowment of the network of 8 laboratories that are to be modernised under this project, for the rapid diagnosis of multidrug-resistant tuberculosis. Also, supply contracts have already been signed for 3 MGIT systems and, by 10 March they will be installed in the laboratories of the pulmonology units in Bucharest, Cluj and Bacău. The staff in the laboratories where the equipment is to be installed will be trained in the modern diagnosis techniques. The training will take place under the coordination of the Marius Nasta Institute of Pulmonology.
By enabling the diagnosis of MDR TB within a very short time interval (2 to 48 hours), the advanced equipment procured under the project offers patients the chance to immediately receive the treatment appropriate for their form of TB.
Marius, a 27-year old IT manager, has been hospitalised at the Marius Nasta Institute for almost two months. He finds it hard to understand what happened to him and why, all of a sudden, his full and always agitated life seems to have come to a standstill. He is one of the patients suspected of multidrug-resistant tuberculosis who wait for their treatment to be determined. Now, Marius has been given an additional chance because, due to the modern equipment procured under this project, he will benefit from rapid diagnosis and from an appropriate treatment. And, if he observes all the indications given by his doctors, he will be cured.
On 8 August 2014, the “Marius Nasta” Institute of Pulmonology in Bucharest, in partnership with the Romanian Angel Appeal Foundation, the Centre for Health Policies and Services Foundation and the LHL International Tuberculosis Foundation in Norway began the implementation of the project “Improving the health status of the Romanian population through increased tuberculosis control”. The aim of this project is to strengthen the control of tuberculosis in Romania, focusing especially on multidrug-resistant and extensively resistant tuberculosis (MDR/XDR TB) and on poor and vulnerable groups.
“The importance of the implementation of this programme speaks for itself. Romania has the highest tuberculosis and multidrug-resistant tuberculosis incidence in the European Union. Approximately 10,000 patients are to be tested and 1,000 patients will be treated thanks to the Norwegian support in the fight against tuberculosis in Romania. This is an important step in the eradication of tuberculosis, both in this country and in Europe.” Tove Bruvik Westberg, Ambassador of the Kingdom of Norway to Romania.
With a total budget of over EUR 10 million, the project is financed in a proportion of 85% by the Norwegian Financial Mechanism 2009 – 2014, within the Public Health Initiatives Programme, the Programme Operator being the Ministry of Health. 15% of the project’s budget represents co-financing from the state budget.
“Tuberculosis is a public health priority for the Ministry of Health and for the Romanian Government. This is why the Ministry of Health has approved a series of measures for the improvement of the National Tuberculosis Prevention, Surveillance and Control Programme, the most important of which being the increase by over 50% of this year’s budget of the National Tuberculosis Control Programme and the approval of the Strategic Plan for the Control of Tuberculosis in Romania 2015-2020.” Suzana Matei, the manager of the Public Health Initiatives Programme, from the Ministry of Health.
The main activities included in the project concern the endowment of 8 laboratories with modern equipment for the rapid diagnosis of tuberculosis and multidrug-resistant tuberculosis, the continuous treatment with quality medication of a number of 1,000 patients with multidrug-resistant tuberculosis, the support of 2,500 patients during outpatient treatment, the update of the national database of the National Tuberculosis Control Programme, the purchase of 2,000 UV lamps to be provided to the TB units, the training of 960 doctors, nurses and administrative staff in the control of TB infection.
“We are hoping that through this project we will increase the treatment success rate, because we have one of the highest success rates for drug-susceptible tuberculosis, i.e. 85%, but this rate is very poor for multidrug-resistant tuberculosis.” Dr. Gilda Popescu, Technical Coordinator of the National Tuberculosis Control Programme.
On 12 February 2015 it took place the press conference for launching the project “Improving the health status of the Romanian population through increased tuberculosis control”.
The event took place in Bucharest, at Minerva Hotel.
The speakers were representatives of the Ministry of Health, the Embassy of the Kingdom of Norway and “Marius Nasta” Institute of Pulmonology, which highlighted the need of strengthening the TB control in Romania and the relevance of the project in the context of national and European efforts to fight this disease.
At the conference participated also representatives of the World Health Organization – the Romania Office, the Ministry of Public Finances, the Embassy of the United States of America, several institutions and non-governmental organizations active in the health area, as well as representatives of the mass media.
The funds necessary for the implementation of the project “Îmbunătățirea stării de sănătate a populației din România, prin creșterea controlului tuberculozei” (The Improvement of the health of the Romanian population through enhanced tuberculosis control) for the period August-December 2014 have been transferred to the Romanian partners in November 2014, and, by the end of December 2014, 91% of these funds had already been spent for the purchase of medicines.
The implementation pace of this project is very rapid. The medicines for the treatment of patients with multidrug-resistant and extensively resistant tuberculosis are essential and we cannot cut any corners in terms of quality when the lives of patients are in our hands. We make efforts every day to find the best solutions to deliver the results promised in this project.” Silvia Asandi, Director of the Romanian Angel Appeal Foundation, project partner, in charge with medicine procurement.
In December 2014, the first batch of medicines for 200 of the 1000 patients who will be treated within the project had already been delivered, in parallel with the payment for a new batch of medicines that will ensure the treatment of 550 MDR/XDR TB patients.
Also in December, as a result of the fruitful collaboration between the Marius Nasta Institute and the RAA Foundation, the procurement procedures were launched for rapid diagnosis equipment and consumables (GeneXpert, MGIT and LPA).
So far, the assessment of the national database of the National Tuberculosis Control Programme has also been completed, and priorities have been established for the necessary changes, in line with the World Health Organisation recommendations.
An equally important step for the progress of the project is the identification by the Centre for Health Policies and Services (CPSS) of the vulnerable communities where activities are to be conducted for information-education-communication and for the detection of TB cases among the poor populations with limited access to health services. For these communities, the next step is to develop information programmes and materials concerning the transmission, prevention, TB symptoms and access to primary medical care.
The project is moving forward and – which is very reassuring – the rapid diagnosis and support services for the patients and affected community have already begun to be materialized, as a result of a successful partnership between the government sector and the civil society.
Each year, tuberculosis (TB) makes million of victims in the world, out of which a few tens of thousands only in Romania. And this in the context in which the general population only heard about the illness and tends to consider it an eradicated problem, an illness of the past century.
“Is still there tuberculosis in the 21st century?”
Yes, there is, and at present it became a universal public health priority. The data of the World Health Organization of October 2014 shows that more than one third of the total world population is carrier of TB bacilli, and one in 10 carrier persons becomes sick. 9 million persons became sick only in 2013, while 1.5 million died, meaning almost 4109 deaths daily. At global level, it is estimated that in 2013, 480,000 people developed drug resistant tuberculosis (MDR TB).
Nonetheless, due to the sustained efforts for the rapid diagnostic and proper and directly observed treatment, at global level, the death rate caused by TB decreased with 45% between 1993 and 2013. About 37 million lives were saved between 2000 and 2013, due to early diagnostic and correct treatment. 86% of the people who developed TB and were under treatment in 2012 were successfully treated.
In Romania, the desease kills 1100 persons each year and affects other 16,000 yearly, most of them among the young and active population. Romania is the country of the European Union with the highest number of TB cases (about 20% of the TB patients in the EU are from Romania). Although the treatment success rate is about 86% at new cases, Romania has one of the lowest multidrug resistant TB curing rate in world, having an annual increase of the infectious patients pool.
Still, Romania is not an isolated case. The World Health Organization mentions, among the challenges in the area of tuberculosis control in the European Union, the need of reform in the health sector, which to include a higher engagement of the primary health care in TB control and a still limited political and financial engagement of the governments in TB control.