Roumyana Petrova-Benedict

Haemoglobinopathies in Europe: health & migration policy perspectives.

BackgroundMajor haemoglobinopathies (MH), such as thalassaemia syndromes (Thal) and sickle cell disorders (SCD), are genetic defects associated with chronic anaemia and other complications. In Europe, MH are rare diseases (RD) but their prevalence is significantly growing in many countries due to mobility and migration flows. This creates a growing health problem in the EU that has not yet been effectively addressed by Member States (MS) authorities. The present study has been conducted with the aim of: (i) providing an overview of policies for MH in 10 EU member states (MS) (ii) analysing the challenges linked to these RD due to growing requirements imposed by population, mobility and migration trends and (iii) identifying gaps, proposing improvements on existing policies, or developing new ones to fit the identified needs.MethodsThe study has been undertaken by a group of members of the European Network for Rare and Congenital Anaemias (ENERCA) and the Thalassaemia International Federation (TIF), in collaboration with the public affairs firm Burson-Marsteller Brussels. Data from 10 EU countries have been gathered using targeted desk research and one-to-one interviews with local stakeholders, including healthcare professionals, patients and public health officers/providers.Results1. MH are the most common RD in all the 10 countries, 2. Data on prevalence, overall burden, trends, and clinical follow up costs are lacking in most countries. 3. Neonatal screening practices show a wide variation across and within countries. 4. Awareness on MH and their related complications is very low, exception made of Italy, Greece, Cyprus and UK, 5. No disaggregated data is available to understand the impact of mobility and migration on the prevalence of haemoglobinopathies, and how healthcare delivery systems should adapt to respond to this situation. 6. Targeted policy measures and/or actions are generally lacking and/or delayed.ConclusionsTen policy recommendations have been drawn from this study, building on 2006 WHO recommendations for MH to include haemoglobinopathies in National Plans of Actions for Rare Diseases.

Health, migration and border management: analysis and capacity-building at Europe’s borders

ObjectivesThree key elements were analysed in Hungary, Poland and Slovakia as a basis for strengthening the capacity of staff and structures related to health, migration and border management: public health concerns linked to migration, health needs and rights of migrants and the occupational health of staff.MethodsThis IOM project was implemented through an in-depth situation analysis as well as the development of training modules and public health guidelines.ResultsFindings indicate a paucity of existing data, gaps in the health care for migrants and few existing tools for border officials and health professionals. Sets of training modules were developed for each of these groups, including common modules on migration and the right to health and intercultural communication, as well as targeted health modules. The guidelines promote good practices in the context of border management and detention.ConclusionsThe EU is working towards a common immigration policy and integrated border management; however, a harmonized approach to migration and health is still lacking. Further research and piloting of the developed materials is needed to fully establish an adaptable, common toolkit.

Infectious disease health services for refugees and asylum seekers during a time of crisis: A scoping study of six European Union countries

BACKGROUND Systematic information on infectious disease services provided to refugees and asylum seekers in the European Union (EU) is sparse. We conducted a scoping study of experts in six EU countries in order to map health system responses related to infectious disease prevention and control among refugees and asylum seekers. METHODS We conducted 27 semi-structured in-depth interviews with first-line staff and health officials to collect information about existing guidelines and practices at each stage of reception in first-entry (Greece/Italy), transit (Croatia/Slovenia), and destination countries (Austria/Sweden). Thematic coding was used to perform a content analysis of interview material. RESULTS Guidance on infectious disease screening and health assessments lack standardisation across and-partly-within countries. Data collection on notifiable infectious diseases is mainly reported to be performed by national public health institutions, but is not stratified by migrant status. Health-related information is not transferred in a standardized way between facilities within a single country. International exchange of medical information between countries along the migration route is irregular. Services were reported to be fragmented, and respondents mentioned no specific coordination bodies beyond health authorities at different levels. CONCLUSION Infectious disease health services provided to refugees and asylum seekers lack standardisation in health assessments, data collection, transfer of health-related information and (partly) coordination. This may negatively affect health system performance including public health emergency preparedness.

Shedding light on governance for Roma health inequities

ABSTRACT The health inequities suffered by the Roma population in Europe represent an alarming and unacceptable source of injustice. As the main ethnic minority in Europe, the gap between the health conditions of the Roma and the rest of the population poses a challenge to human rights and public health. Many political efforts have been deployed in Europe to tackle these inequities. However, they have fallen short, even causing paradoxical consequences. In this paper, we argue that previous political efforts have failed because they were developed from a neoliberal perspective, which perceives Roma health inequities as isolated ethnic problems for which there is no political accountability. Hence, there is a need for transformative political change that results in the protection of rights and self-governance to address health inequities experienced by Roma people. We propose a framework of health governance guided by the following principles: (a) effective involvement of multiple stakeholders by building collaborative capacity; (b) infusion of health perspectives in all policies and multisectoral actions; (c) transparent monitoring and evaluation; (d) role redefinition of policy promoters; (e) prevention of institutional discrimination; and (f) assuring cultural competence among policy promoters.

Migrant and refugee populations: a public health and policy perspective on a continuing global crisis

The 2015–2017 global migratory crisis saw unprecedented numbers of people on the move and tremendous diversity in terms of age, gender and medical requirements. This article focuses on key emerging public health issues around migrant populations and their interactions with host populations. Basic needs and rights of migrants and refugees are not always respected in regard to article 25 of the Universal Declaration of Human Rights and article 23 of the Refugee Convention. These are populations with varying degrees of vulnerability and needs in terms of protection, security, rights, and access to healthcare. Their health status, initially conditioned by the situation at the point of origin, is often jeopardised by adverse conditions along migratory paths and in intermediate and final destination countries. Due to their condition, forcibly displaced migrants and refugees face a triple burden of non-communicable diseases, infectious diseases, and mental health issues. There are specific challenges regarding chronic infectious and neglected tropical diseases, for which awareness in host countries is imperative. Health risks in terms of susceptibility to, and dissemination of, infectious diseases are not unidirectional. The response, including the humanitarian effort, whose aim is to guarantee access to basic needs (food, water and sanitation, healthcare), is gripped with numerous challenges. Evaluation of current policy shows insufficiency regarding the provision of basic needs to migrant populations, even in the countries that do the most. Governments around the world need to rise to the occasion and adopt policies that guarantee universal health coverage, for migrants and refugees, as well as host populations, in accordance with the UN Sustainable Development Goals. An expert consultation was carried out in the form of a pre-conference workshop during the 4th International Conference on Prevention and Infection Control (ICPIC) in Geneva, Switzerland, on 20 June 2017, the United Nations World Refugee Day.

Immigration Detention and Health in Europe

In Europe, irregular migrants and rejected asylum-seekers still face detention. This chapter examines the most important aspects related to health in the context of immigration detention in Europe. Reviewing the literature and drawing on field evidence from IOM projects, it identifies the main health conditions of migrants in detention and looks into the common EU standards set in the Return Directive and the Reception Condition Directive as well as the relevant non-binding resolutions of the Council of Europe. The main finding is that despite these policies being in place, conditions typically found in European migrant detention facilities pose risks both to the physical and mental health of migrants as well as to immigration officials and health professionals working with detainees. Health conditions in detention facilities need to be improved by avoiding over-crowding and prison-like conditions as well as training staff to the specific requirements of immigration detention.