In Romania, Tuberculosis kills every year around 1,100 people and affects other 16,000, mostly among the young and active population. The patients are diagnosed late, don’t receive complete and quality treatment and don’t have access to social protection measures. They are not helped through psychological, social and vocational support to cope with the disease and the treatment side effects or to be socially reintegrated after recovery. Moreover, millions of Romanians are exposed to tuberculosis (TB) and are at risk to develop the disease, since the population is not informed about it and how easily they can become infected.
Romania is the country most affected by tuberculosis in the European Union. Lack of tuberculosis prevention and control measures, regulated by law, and the severe shortage of funding for TB control are the main challenges that hinder not only the eradication of the disease in our country but threatens to make Romania an infection reservoir for Europe.
A draft Bill on the measures for prevention and control of tuberculosis has been developed this year under the program “Together for a Tuberculosis-free Romania!” implemented by the Association for Multidrug Resistant TB Patients’ Support (AMRTPS) and the Romanian Angel Appeal (RAA). The proposed bill was developed by a team of experts in law, healthcare and public health and is based on the results of the research on TB patients’ needs in Romania (Report on mapping the needs of TB patients – June 2014) and consultations with policy makers in the field of TB control.
The draft Bill on the measures for prevention and control of tuberculosis regulates the measures for tuberculosis prevention, improving TB diagnosis, treatment, measures for social protection of people infected with TB, the responsibilities of public institutions in the prevention and control of this disease, public information about the risks of transmission of TB as well as funding solutions for the measures to prevent, control and treatment of disease.
In early September 2014, the initiators of the bill have launched an advocacy campaign in support of its enactment.
The campaign activities include consultations with representatives of the National Tuberculosis Control Programme (NTP), meetings with institutions having responsibilities in the field, the dissemination of the bill by the member organizations of the StopTB Romania Partnership and thus attracting their support, attracting the support of members of Inter-parliamentary Union, identifying supporters of the bill in the Parliament of Romania and initiating a petition to support the enactment of the bill.
“We are today almost at the end of a process in which we actively listened to the TB patients in Romania and then, through successful collaboration with medical experts, lawyers and policy makers, we tried to find answers to the problems faced by the patients. In the first part of this year, we conducted a mapping of the TB patients’ needs, in a survey that explored the views of the patients, their families, medical personnel, and the decision makers in the field. The survey, both qualitative and quantitative, consisted in eight focus groups organized in hospitals in Bucharest and around the country, involving patients with multidrug-resistant tuberculosis and sensitive tuberculosis, their families and professionals, a sociological survey on a sample of 80 TB patients under treatment in Bucharest and Bisericani and in-depth interviews with representatives of the National Tuberculosis Control Programme, Ministry of Health and the National Institute for Medical Expertise and Work Capacity Recovery.
Based on the results of this research, the draft Bill on the measures for prevention and control of tuberculosis in Romania was developed. It is a proposal that, if adopted, will cover the psychological and social support needs of patients with tuberculosis in Romania, support that needs to complete the medical services provided by specialists, in order to increase the number of patients cured and to lower the risk of TB transmission in the general population. We will continue our advocacy efforts in support of the draft bill and we hope that the policy makers will show openness to discussion and enactment of the law “- psychologist Catalina Constantin, President of the Association for MDR-TB Patients’ Support.
The report “Mapping the needs of patients with tuberculosis in Romania” and the draft bill on measures for prevention and control of tuberculosis were developed within the project “Together for a tuberculosis-free Romania!” implemented by the Association for MDR-TB Patients’ Support and the Romanian Angel Appeal Foundation. The project started on October 1, 2013 and ended on September 30, 2014.
The project was co-funded through a grant from Switzerland, through the Swiss Contribution to the enlarged European Union.