Improving Access of Roma to Health Care through the Decade of Roma Inclusion

15 December 2004

Heather Doyle1

Decade of Roma Inclusion

Early 2003 was marked by widespread public debate surrounding the issue of coercive sterilisation and other extreme human rights abuses in relation to Romani women's health. Research by non-governmental organisations determined that the practices of coercive sterilisation systematically applied by the Czechoslovak government in the period of the 1970s until 1990 have not been terminated in the post-communist period. There is significant cause for concern that Romani women in Slovakia and in the Czech Republic are still subjected to coercive sterilisations2.

The health situation of Roma in Central and Eastern Europe is a clear demonstration of the sometimes murky intersection between health and human rights. It is simple to draw a direct link between discrimination within health systems and the health of individuals in such egregious cases as described above. However, as horrid as this abuse of human rights and dignity is – the health of Roma across Central and Southeastern Europe is likely more affected by systematic exclusion from social, economic and political systems. Health is ensured only when there is freedom from discrimination, the right to information is realised, and the right to participate in the social and civil life of the larger society is guaranteed and recognized by everyone3.

In an attempt to redress these inequities and close the gap between Roma and non-Roma, the Open Society Institute (OSI), and the World Bank proposed the Decade of Roma Inclusion (2005-2015) at a major international conference "Roma in an Expanding Europe: Challenges for the Future," hosted by the government of Hungary in June 2003. The conference was organised by the Open Society Institute, the World Bank, and the European Commission, with support from United Nations Development Program (UNDP), the Council of Europe Development Bank, and the governments of Finland and Sweden.

At this high-level conference, prime ministers or their representatives from eight countries – Bulgaria, Croatia, the Czech Republic, Hungary, Macedonia, Romania, Serbia and Montenegro, and Slovakia – formalised political commitments to close the gap in welfare and living conditions between the Roma and the non-Roma and to break the cycle of poverty and exclusion. As part of this commitment, governments agreed to establish specific goals, targets and indicators in four priority areas of education, employment, health and housing. It is expected that by the end of 2004, governments will finalise their commitment in Decade Action Plans. The Decade of Roma Inclusion will officially be launched in January 2005.

As national governments and other key stake-holders prepare for the Decade of Roma Inclusion, the time is opportune to explore what has been implemented in the field of health and how these lessons could be applied to Decade implementation.

Health Situation of Roma

Despite the continual lack of solid data, there is general agreement among health and policy experts that Roma suffer from poorer health than the general population. Various studies documenting the health status of Roma have shown a higher rate of vitamin deficiencies, malnutrition, anaemia, dystrophy and infectious diseases than the majority population4. Rates of infant mortality are substantially worse and the life expectancy of Roma is on average ten years less than that of non-Roma. In 2004, UNAIDS announced that Eastern Europe and Central Asia regions were experiencing the fastest growing HIV epidemic in the world. International and national health experts predict Roma will be disproportionately affected by AIDS due to high poverty rates, high mobility, and limited access to social services in comparison with majority populations.

The lack of access to quality medical care continues to contribute to the poor health of Roma. This includes both documented discrimination against Roma in health care settings across Eastern and Central Europe as well as perceptions by Roma of unequal treatment and discrimination. This discrimination and marginalisation is further reflected in the fact that Roma are far more likely to be less educated, unemployed, and live in substandard housing than the majority population in each of these countries. It is these socio-economic characteristics that are the strongest determinants of Roma health status.

Attempting to address these larger social determinants of health in order to close the gap in health status between Roma and majority populations is an enormous challenge. It is especially complex for governments still struggling with major systems transformations with extremely limited financial resources, including money for health programs. Even if strong willingness exists on the part of the government to address these inequities, it must be recognised that major hurdles exist in the widely entrenched discrimination against Roma in all segments and social strata of these societies.

OSI Network Public Health Lessons Learned in Roma Health

Working in collaboration with the Soros Foundation network in the region, OSI's Network Public Health Program (NPHP) has supported programmes working to improve the health of Roma since 2000. NPHP began activities in Roma Health by sponsoring the seminar Roma Access to Healthcare. Since then, the program has supported nearly twenty local organisations implementing projects to improve the health of Roma in Bulgaria, Macedonia, Romania, Serbia & Montenegro and Slovakia.

Activities supported by NPHP include research projects, community health education initiatives, and the training and integration of health mediators at health centres and hospitals. The program has increasingly recognised that the most effective way to impact Romani health is to work towards comprehensive policy change and implementation that is cross-sectoral and holistic in its approach.

As governments consider programs to meet their Decade of Roma Inclusion goals, it might be useful to consider some of the lessons that OSI/NPHP has drawn from the past four years of working on Roma health in Central and Eastern Europe.

Pro-Equity Health Policy

First, genuinely pro-equity health policy is needed. A pro-equity health policy is comprehensive and involves ensuring equal access to quality health services. This involves consideration to the delivery of clinical services, management of health information systems, and in the relationship between the health sectors and other policy areas5. A collaborative inter-sectoral approach is crucial to this end. The health of individuals is largely determined by factors outside of the traditional responsibilities of the health sector. For instance, the nutritional state of children is worsened by water-borne diseases as a result of lack of access to potable water. The Decade of Roma Inclusion addresses such challenges through national level Decade working groups. The working groups use a comprehensive approach that could help policymakers respond to the interaction of different sectors and their impact on Romani health. The working groups also provide a mechanism to ensure collaboration and coordination among the Decade's priority areas of health, education, employment and housing. By paying careful attention to the Decade Action Plans for all four sectors, policymakers can ensure that major determinants of health are effectively addressed.

Research and Data Analysis

Policy formulation needs to be based on sound research and consistent data analysis. There have been a number of studies documenting disparities in health conditions between Roma and non-Roma. Research efforts, however, need to be scaled up and study methodologies must include the active participation of Roma communities in design and implementation. National health systems need to incorporate mechanisms to disaggregate data based on ethnicity into their current census systems. UNDP has convened a Data Experts Group as part of the Decade of Roma Inclusion. This group brings together appropriate government and civil society groups, including national census experts, to put data collection systems into place to monitor Decade Action Plans. More importantly, the Decade has highlighted the necessity to have national census systems capture information on the health status of vulnerable populations so that government planners can make resource and policy decisions based on valid data.

Capacity Building

Building the capacity of Romani organisations and civil society needs to be emphasised and given serious attention. This development principle has received an enormous amount of attention across the international development community. Yet true capacity-building requires substantial time and resources, and donors and governments have not been as successful putting capacity building principles into practice. Representatives from Roma civil society are active participants in most country level Decade working groups and Roma organisations have been consulted in the preparation and planning for the Decade. However, continual efforts must be made to ensure that participation by Roma civil society is genuine and not just token representation. Further, by endorsing the Decade Action Plans, governments will publicly commit themselves to the stated goals, targets and indictors. This provides a mechanism by which civil society can monitor progress and develop advocacy efforts to promote policies that are truly equitable.

Gender and Discrimination

Finally, all programs working to improve Roma health need to address aspects of gender and discrimination in their design and implementation. These two issues are identified as cross-cutting themes of the Decade of Roma Inclusion, and government working groups have tried to incorporate mechanisms to assess the impact of discrimination as well as differences in health gaps between Roma men and women into the proposed targets and indicators. Other key stakeholders need to ensure that these issues are at the forefront of program planning and implementation. The emphasis on addressing the impact of gender and discrimination should be a key facet in evaluations to ensure that programs are having the intended impact.


There are more than five million Roma in Central and Eastern Europe. Decades of social exclusion and discrimination have resulted in poorer health for Roma than other members of society, leaving Roma more vulnerable to illness and preventable deaths. The process of EU Accession has provided an opportunity for governments and civil society to capitalise on accession criteria requirements to address these disparities. In many cases, however, these changes have not translated to the expected gains in health and social status for Roma.

The Decade of Roma Inclusion provides a mechanism for governments, civil society and other key stake holders such as the European Union to collaborate on developing a holistic and multi-sectoral approach to address the social exclusion of Roma. The health of Roma depends on equitable policies and programs based on sound research and data analysis. Policy makers need to foster real collaboration with Romani communities and make capacity building a priority with dedicated resources that match its importance. By taking these actions, policymakers and advocates who implement the Decade of Roma Inclusion will do much to establish principles an practices that clearly recognise the fundamental connections between health and human rights.


  1. Heather Doyle is Program Coordinator with the Open Society Institute's Network Public Health Program based in New York.
  2. See in particular: Center for Reproductive Rights and PoradBody and Soul: Forced Sterilization and Other Assaults on Roma Reproductive Freedom in Slovakia, at:; European Roma Rights Center. Written Comments Concerning the Slovak Republic for Consideration by the United Nations Committee on the Elimination of Racial Discrimination at its 65th session, August 2-20, 2004, at:; and European Roma Rights Center. UN Committee against Torture Urges the Czech Republic to Investigate Alleged Coercive Sterilisation of Romani Women, at:
  3. World Health Organization: 25 Questions & Answers on Health & Human Rights. Health & Human Rights Publication Series; Issue No. 1, July 2002.
  4. Save the Children. "Roma Children in Romania. Research Report. Summary." In Final Report to the International Workshop on Roma Children in Europe. Bucharest, 1998, p. 82. Open Society Foundation-Sofia. "Common Health Problems Among Roma - Nature, Consequences, and Possible Solutions."
  5. Vega, Jeanette and Alex Irwin. Tackling Health Inequalities: New Approaches in Public Policy. Bulletin of the World Health Organization. July, 2004, 82 (7).


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