Few days ago, searching the internet for particular information about the upcoming event (Rare Disease Day – February 28), a catchy title got me curious and made me want to read the article. I am speaking about the article entitled ‘Transposition and Implementation of EU rare disease policy in Eastern Europe’ published by your journal, volume 17, 2017 – issue 6, pages 557–566 [1]. The article contains incorrect and misleading information about Romanian National Plan/Strategy on Rare Diseases. Moreover, that information is not consistent with European official position published online by RD-Action-Data and Polices for Rare Diseases (Joint Action on Rare Diseases), an EU Health Programme (2015–2018). While the article states that ‘...... and Romania have not yet officially adopted a national plan for rare diseases’, the Overview Report on the State of the Art of Rare Diseases Activities in Europe 2016 version included Romania among the 24 countries which have adopted a National Plan/ National Strategy for Rare Diseases, pages 12–13, and is evidence to the contrary [2]. Therefore, writing a letter to the Editor is one of the best ways to share with journal readers the accurate information and facts on this matter. For the beginning, a brief history of rare diseases (RDs) in Romania showing where we are now. In 2007, Romania joined the European Union and harmonized its legislation with EU requirements. New strategic directions and priorities for health system reform had to be established including RDs. At that time, Romanian health-care system had the potential to positively influence the provision of integrated, comprehensive medical and social services that are sustainable and responsive to RD community needs. But a plan was needed! Patient organizations, health-care professionals, and academics, speaking with one strong voice, Romanian National Alliance for RDs, have played an active and positive role in the establishment of a national plan/strategy for RDs. The European Council [3] and EUROPLAN project [4] recommendations for development of national plan for rare diseases were used and adapted to the national situation. It was a long way, many preliminary stages, but finally by the end of 2013 the Ministry of Health adopted the National Plan for Rare Diseases and included it within the National Public Health Strategy for 2014–2020 (‘Prosperity of Health’). The National Public Health Strategy and Action Plan for implementing it were approved by Government Decision no. 1028/2014 [5]. The strategy established a regulatory, political framework which generates a system to integrate health and social services. A dedicated budget does exist for the National Plan for RDs in Romania. The Government approved, by Decision (no.155/2017, the national programmes for rare diseases to be carried out and funded in 2017 and 2018 by Ministry of Health (dietary treatment of RDs) and National Health Insurance House (curative treatment for RDs). In addition, there is a dedicated body in place to oversee the drafting or implementation of the National Plan. At the end of 2013 the National Committee for RDs (NCRD) was created by a Public Health Ministry Decree (no.1215/2013) as an interdisciplinary scientific body without legal personality. This body plays an advisory role by providing technical expertise through both its own team and other teams specialized in different areas. As a result of continuous activity and effort provided by health planners, policy makers, and stakeholders focused on improving the health, political, and legal framework, the Ministry of Health issued the order of Centres of Expertise for RDs (no. 540/2016). Romania has just qualified as a country having a national strategy for responding to rare diseases and a health political framework in the field. Likewise, it started to implement a few issues of its national plan such as: the national evaluation of Centres of Expertise, using the EUCERD Recommendation on Quality Criteria for Centres of Expertise [6] adapted to the national situation, and the application for ERN membership. So far in Romania there are 14 Centres of Expertise in the field of RDs and some of them are members of European Reference Networks for RDs. Despite the political instability and economic difficulties, RDs are recognized by authorities, policy makers, and all stakeholders in the field as a priority for health care in Romania.
Introduction Occupational medicine, science and medical discipline with a practice for more than three centuries, recognises unequal development, linked with the interface human-work/occupation. This link has an accelerated growth for some companies or health systems that coexist with traditional ambience of other systems, even inside a country. Material and methods By analogy with the three known axes 0x, 0y, 0z while time is the fourth dimension, the analysis is made by considering the four pillars, medicine, science, business, public/social policy for the ten items (the human resources, the specialised vocabulary and communication, the service type, the medical applications for preventive, curative, emergency, recovery, the medical technology-innovation, the types of financing, Q indicators, networking by sharing the data, the working and development environments, the strategy-law) which customise and differentiate the spherical content of a medical practices with a high turnover of the scientific work dedicated to the health of both the individual and the organisation, the community, the whole society. Outcomes and comments Even though the initial premises were focused on curative medicine for the workers with occupational diseases (B. Ramazzini, XVIII century), the practice is enlarged, generating polemics, sometimes conflicts, pointing to all the dedicated professionals and/or beneficiaries. Our study shows that the capacity and the context of the tendering is different on the four pillars and reflects the choice or decision of the professional/doctor to ensure the management of occupational medicine in its entirety or to transfer segments of intervention to other partners. This is reflected concretely for example in standardisation (new approach for time allocation per action), in the health benefits (the surveillance of osteoporosis at workers over 55 s, new hypotheses for the bond between the exposure profile and the occupational disease roadmaps, new design for the medical-toxicology screening programmes), economic development of the clients (inside digital innovation of the medicine under new workplaces’ technologies, mathematical studies for management-administration-finances)-the new themes under new premises for the medical practice in our health system.
The objective of the research is to provide an analytical model of the economic Cost‑Benefit Analysis (CBA and resultant policy recommendations with the proposed emergency medical service (EMS project in Constanta County (714923 population 2005 Romania in view. The economic cost of investment is US$ 31.5 million as per 2006 price level. The economic benefits are due to (i incremental benefits attributable to EMS at the Constanta Emergency Hospital (CEH as measured by willingness to pay (WTP for healthier life and (ii social cost‑saved (recovery of Productivity foregone due to emergent injury and diseases measured by disability‑adjusted life years (DALY. WTP was estimated by Contingent Valuation Method (CVM‑Double‑bounded Dichotomous Choice method (449 interviewees resulting in US$ 1.6 million par annum (US$ 214.8 per household 8.9 percent of average household disposable income in Constanta. DALY in Constanta in 2005 is estimated at 118885 person‑years while applying the“ratio method”of total DALY to death DALY (7286 deceased and the disability adjustment factors (weighed average 0.67. With his and the productive beneficiaries (age group 15‑59 of EMS at CEH (5812 DALY and the annual household disposable income in Constanta average (US$2420.7 financial‑benefits‑converted to the social cost‑saved is US$ 12.7 million (SCF=0.9 totaling to US$ 14.3 million of economic benefit per year. The economic internal rate of return (EIRR is 32.2 percent thereby quantitatively revealing high economic viability (efficiency in scarce resource allocation of the concerned EMS project in Constanta.
A Romenia sofreu uma grande epidemia de rubeola em 2002-03, com mais de 115 000 casos notificados em todo o pais e uma incidencia de 531 casos notificados por 100 000 individuos da populacao. A incidencia foi mais elevada nas criancas em idade escolar. As coortes de raparigas adolescentes vacinadas em 1998 e 2002 (quando foi disponivel uma vacina contra a rubeola) apresentaram taxas de incidencia significativamente mais baixas (p l 0,001) comparativamente com as taxas registadas em rapazes das mesmas faixas etarias que nao foram vacinados. Em 2003, dos 150 casos de suspeita de sindrome de rubeola congenita (CRS) notificados, sete (4,6%) foram confirmados por anticorpos IgM contra a rubeola positivos. Na ausencia de vacina contra a rubeola disponivel para controlo da epidemia, foi desenvolvido um plano de resposta a epidemia destinado a melhorar a deteccao de casos e limitar a transmissao do virus da rubeola. Foram implementadas as seguintes actividades: foi implementada a vigilância de mulheres gravidas com suspeita de rubeola ou historia de exposicao ao virus da rubeola, com acompanhamento da evolucao da gravidez; foi fortalecida a vigilância do CRS; foram reforcadas as normas de controlo da infeccao existentes para prevenir a transmissao da doenca dentro das instituicoes de saude; e foi desenvolvido um plano de comunicacao. Em Maio de 2004, a Romenia esta a introduzir a vacina contra o sarampo, papeira e rubeola (MMR) para vacinacao de rotina de criancas com 12 a 15 meses de idade, continuando simultaneamente a vacinacao de raparigas no 8o grau de escolaridade (13 a 14 anos de idade) com vacina apenas contra a rubeola.
