“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.”
Equipment for the rapid diagnosis of MDR TB; the first patients enrolled in the project, for treatment
The firsts months of 2015 have meant major progress in the project “Improving the health status of the population in Romania by increasing tuberculosis control”, conducive to achieving some of the objectives of the whole endeavor: strengthening national capacity for early diagnosis of TB MDR / XDR and providing complete, continuous and quality treatment with second-line drugs for patients with MDR TB / XDR.
In late February, it was completed the acquisition of LPA and MGIT equipment enabling rapid diagnosis of tuberculosis resistant to treatment. In the first part of March 3 MGIT equipment have already been installed in lung disease laboratories in Bucharest, Cluj and Bacau. Because it enables the diagnosis of MDR TB in a very short time, the high performance equipment purchased under the project offers patients the chance to receive appropriate treatment immediately form of tuberculosis sufferers.
In early March, the first 50 patients with MDR TB were enrolled in the project (35 at Marius Nasta Institute, in Bucharest and 15 at the Bisericani Pneumology Hospital, in Neamt county) for receivind correct, complete and quality treatment treatment.
Training for professionals and TB Technical Assistance Unit and Management of PNPSCT staff
During 19 – 22 March, at Ibis Parliament Hotel, in Bucharest, the first session of training of trainers on drug management, control and surveillance of tuberculosis infection was held. Further, the trainers will train 600 doctors and nurses from across the country. Training sessions for different groups of participants are set to run until March 2016. The courses are organized under the coordination of the Policy and Services Health Center Foundation.
Between 24 – 25 March, the first training session in methods for rapid diagnosis of tuberculosis was held for the Marius Nasta Institute laboratory personnel. The courses are coordinated by Marius Nasta Pneumology Institute team.
Information activities
- The press conference to launch the project was held on February 12, 2015, at Hotel Minerva. The speakers were the Ambassador of Norway in Bucharest, Mrs Suzana Matei, RO 19 Program Manager from the Ministry of Health and Mrs. Dr. Gilda Popescu, Project Manager, from the Marius Nasta Pneumology Institute. The event enjoyed broad participation from the World Health Organization – Romania Office, Romanian Ministry of Finance, the US Embassy, numerous institutions and NGOs active in health, media.
- It was completed the first draft of the project’s presentation brochure.
- In early March, the first two issues of the electronic bilingual Newsletter (Romanian and English) of the project were sent to over 450 recipients – Romanian decision makers, public authorities, media, NGOs in Romania, but also to embassies and international organizations such as Finnancial Mechanism Office, World Health Organization (WHO Europe and WHO), Global Fund, Stop TB Partnership, TB Europe Coalition, GD Advocates, Results UK, TB Alert, UK Parliament, The Union etc.
March 24th is the World Tuberculosis Day. The day when we salute the people who struggle and often succeed to defeat the bacillus. Doctors and patients alike, helped by social workers, psychologists, public health experts, drug manufacturers, epidemiologists and so many others.
In Romania, 3 people die from TB while other 45 are diagnosed with the disease every day. We are still the member country of the European Union with the most new cases recorded: 1 of 5 Europeans diagnosed with TB is from Romania. Worse than these statistics is that patients who could be cured in a relatively short period become difficult to treat because TB becomes drug resistant. The reasons are many: from under-diagnosis or late diagnosis due to the lack of rapid tests, to the lack of necessary drugs and low patients’ adherence to treatment.
Taking TB drugs every day for 6 months is not easy. The harder it is to take them for at least two years if the tuberculosis is resistant to almost all the existing drugs. The side effects can bring down even the strongest man, let alone one already weakened due to the illness. Daily trips to the clinic for treatment, the new routine that changes the old house-job order, the fear of stigmatization, isolation in the community, fear “of being found out”, all these can make the patient interrupt the treatment. Therefore tuberculosis should not be just the patient’s problem, their little secret hidden between the walls of their house. Is the problem of the entire community, be it a mountain hamlet or an entire country!
In the end, when there is will, the one problem left to solve is the money. The costs for tuberculosis eradication are very high, and not just in Romania. But in the long term, it is an investment that we need to make. If we want to have a Tuberculosis-free Romania in 2050, we must act now!
Romanian Angel Appeal welcomes the recent adoption by the Romanian Government, of the National Tuberculosis Control Strategy for the period 2015 – 2020 and considers it an important step that Romania makes to fight tuberculosis. But equally important is that the budget allocated to thae Strategy – 1.571 billion lei – does not remain only on paper but translate into concrete actions.
Therefore the Romanian Angel Appeal Foundation considers that NGOs that promote the cause of people affected by tuberculosis have today a clear mission: to send a strong message to all those who have the necessary levels and can take action to address this public health problem: the Government and the Parliament.
We can send to convince them to participate in the Riga Inter-Ministerial meeting on Tuberculosis in Europe, especially in Eastern Europe. We can sign the asking them to endorse and take concrete measures in the fight against Tuberculosis. We can send to the Members of Parliament and ask them to sign the Barcelona Declaration and join the Global Parliamentary Group for Tuberculosis.
Tuberculosis does not choose! It has no preference for gender, race, social status or education. Does not have a passport, does not require a visa, it travels freely. Therefore it matters to all of us that:
- Out of the 9 million new #TB cases in 2013, 3.3 million are consistently missed by health systems. It’s just not right! #worldtbday
- About 1.5 million people die from #TB each year — this equates to 4000 people/day. We have to end this. #worldtbday
- Nearly 2 billion people are estimated to have latent TB infection – that is one person in three worldwide. #worldtbday
Contact:
Costinela Caraene, PR Coordinator
tel.: 0040.721.151.187
e-mail: costinela.caraene@raa.ro
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:
- ensure universal access to rapid diagnosis methods;
- diagnose at least 85% of all estimated drug sensitive TB and multidrug resistant TB cases;
- successfully treat at least 90% of new culture positive TB cases and 85% of all retreatment cases;
- successfully treat 75% of MDR-TB cases;
- reduce overall TB mortality rate to 4.3 per 100 000 population;
- general decrease of the disease incidence;
- general improvement of the health system capacity to control TB.
Other results estimated to be reached after the implementation of the Strategy:
- decrease the global incidence rate of the disease from 72,9 cases per 100.000 population in 2013, to less than 50 cases per 100.000 population in 2020;
- decrease the number of deaths from 5,3 per 100.000 population, in 2013, to less than 5 per 100.000 population in 2020;
- decrease the total number of patients from 15.523 notified cases in 2013, to less than 10.000 cases in 2020.
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.
The Romanian Government approved by Decision the National Strategy for Tuberculosis Control for 2015-2020. The normative act aims to decrease the tuberculosis incidence and mortality, through services for prevention, detection, diagnosis, treatment and increased adherence to treatment, as recommended by the World Health Organization (WHO).
The development of the strategy was coordinated by the Ministry of Health and the working group included experts from national and international institutions and organizations such as the “Marius Nasta” Pulmonology Institute, the “Prof. Dr. Matei Balş” Institute for Infectious Diseases, the Romanian Angel Appeal Foundation, the Association for MDR-TB Patients Support, the Romanian Association against AIDS, UNICEF and WHO.
Some of the specific objectives to be reached by 2020:
- To ensure universal access torapiddiagnosticmethods;
- To diagnoseatleast 85% of all estimated cases of sensitive tuberculosisandmultidrug-resistant tuberculosis;
- To cure at least 90% of new cases and at least 85% of the re-treatments;
- To cure75% of multidrug-resistant tuberculosis cases;
- To cutoverallmortalityratetoless than3per 100,000 population;
- To decrease the overallincidence ofdisease;
- To improve thehealth systemcapacityto control
Among other results expected to be achieved following the strategy approval, we mention:
- Decrease of the overall incidence from 72,9 cases per 100.000 population in 2013 to less than 50 cases per 100.000 population in 2020;
- Decrease from 5,3 deaths per 100.000 population in 2013 to less than 5 per 100.000 in 2020;
- Decrease of the total number of patients, from 15.523 cases notified in 2013 to less than 10.000 cases in 2020.
According to a news post from the Government website, “the approval of the National Strategy for Tuberculosis Control makes it possible to mobilize resources from EU structural funds in 2014-2020 and other European grants. Thus, it is estimated that the Strategy will be financed from: 145 million lei from structural funds in 2014-2020, 46 million lei from funds granted through the Norwegian Financial Mechanism, 37 million lei from the Global Fund to Fight AIDS, Tuberculosis and Malaria, the state budget and other grants or reimbursable funds. By reaching the annual objectives, the total expenditure, after a peak in 2016, will gradually decrease until 2020. The total budget for the 2015-2020 Strategy for the activities of diagnosis, treatment, laboratory equipment, surveillance and human resources amounts to almost 1.571 billion lei.”
The approval of the National Tuberculosis Control Strategy is an important step in the national efforts to fight this disease which makes tens of thousands of victims every year in Romania (about 16.000 people get sick and 1.100 people die of tuberculosis each year). Romania has one of the lowest treatment success rates in the European Union. Despite some progress in the past 12 years, Romania is the EU country with the highest incidence of tuberculosis (four times above the EU average!), one of the lowest treatment success rates and, accordingly, an annual growth of the infectious patients reservoir.
The National Strategy for Tuberculosis Control has the ultimate objective to ensure the conditions for eliminating TB as a public health problem in Romania by 2050.
Contact:
Costinela Caraene, PR Coordinator
Tel: 0721.151.187
e-mail: costinela.caraene@raa.ro
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