Example 2: Promoting the rights of Roma patients in the Macedonian health care system
Association for Emancipation, Solidarity and Equality of Women (ESE)
Centre for Democratic Development and Initiatives (CDRIM)
Humanitarian and Charitable Association of Roma (KHAM)
Roma Resource Center (RCC)
The Association for Emancipation, Solidarity and Equality of Women (ESE) in Macedonia promotes women’s human rights and social justice in Macedonia. The ESE paralegal project is supported by the Roma Health Project and the Law and Health Initiative by the Public Health Program at Open Society Foundation. ESE works closely with three Roma human rights groups:
- The Centre for Democratic Development and Initiatives (CDRIM), which works on democratization and human rights, education, and health for the Roma Community living in Sutro Orizari;
- The Humanitarian and Charitable Association of Roma (KHAM), which is a Delveco communication organization that aims to improve the social, economic, health and education level of the Roma community; and
- The Roma Resource Center (RCC), which is focused on social inclusion of marginalized groups, gender equality and transparency in Sutro Orizari. Sazije’s case, highlighted below, was identified through the ESE paralegal project but taken up by the Roma SOS.
Macedonia’s Roma community is characterized by high levels of poverty, unemployment, poor health, and a low level of education. Roma remain marginalized from many aspects of public and social life, including access to justice and quality health care services. In 2009, Macedonian law was amended to provide universal health insurance. However, many Roma people living in the slums or temporary dwellings find it difficult to access health insurance, because they often do not have the necessary identity documents to apply for health insurance benefits or have a permanent physical address.
According to Macedonian law, every person has a right to select his or her family doctor, yet many Roma people do not have sufficient information about available health services to realize this right. The doctors of many Roma patients routinely fail to explain their medical conditions adequately, with the result that many chronic disease patients are left unaware of their need for regular checkups. In a study carried out in 2011, ESE found that 76% of patients were not able to procure and use the best therapy, 9.4% said that their information was given away without their consent, and 15.6% said they were denied the right to privacy.
The Health for all, Health for Roma project is centered around a paralegal program based in the Roma communities in Shutro Orizari and Delcevo. ESE trained ten community paralegals with an emphasis on human rights and patient care, as well as the structure and composition of the health and judicial systems. ESE then placed the paralegals with CDRIM, KHAM, and RCC. ESE also provides continuous case supervision for the paralegals. The paralegals offer advice, accompany clients to institutions to access services, and prepare requests and other written documents needed to realize their clients’ health care rights. The paralegals also refer clients to lawyers, government bodies or civil society organizations.
The paralegals undertake a “door to door” program, which involves home visits to Roma households at least once every two months. The project also involves awareness-raising on specific health issues in the community through roundtable debates and public discussions.
Story of Sazije
When Sazije fell and hurt herself, her family doctor referred her to a specialist who ordered a plaster cast for her arm. However, the cast was placed on Sazije’s lower arm, while her pain was in her shoulder. Sazije asked her son to explain this to the doctor, who told her that if she did not like his treatment, she should seek help elsewhere. A few days later, Sazije visited a different specialist, who removed the cast, which was placed incorrectly, and had to break and reset the bone in order for it to heal properly. Seeking justice for the indignity and pain she suffered, Sazije went to the Humanitarian and Charitable Association of Roma (KHAM) which, together with the Association for Emancipation, Solidarity and Equality of Women (ESE) and Roma SOS, helped her initiate court proceedings against the hospital for discrimination and mistreatment based on her Roma status.
“I cannot describe the difficulties and humiliation I experienced. My pain could be relieved only if justice was done for everything that had happened, in the hopes that others would not have to go through the same ordeal.” –Sazije
Results and Lessons Learned
ESE emphasizes the importance of the educational roundtables run by the paralegals from CDRIM, KHAM, and RCC, which aim to inform the local Roma population about the content and importance of patients’ rights and how to enforce them. The roundtables lead to an increase in the number of clients asking for paralegal assistance and support, and also shift the focus from health insurance and medical negligence-related complaints to complaints related to issues such as discrimination, consent, and confidentiality. The project is consequently helping to address rights issues related to health for the entire community, not just individual claims for damages.
Paralegal assistance and support provided on individual cases, combined with informational and educational workshops, contributed towards better understanding of the importance of patients’ rights and the ways of health protection. Raised awareness and understanding had resulted in resolving concrete problems related to health care and health insurance provision. Both of them are essential for fulfilling the right to health.
Continuous training of paralegals is essential to the success of this project, as this has enabled the paralegals to keep up to date with the law and allows them to come back and ask questions on issues that arise during their work. ESE benefits from close relationships with primary and secondary health care services, as well as with registered general practitioners, gynecologists, dentists, and orthodontists. They also collaborate with the local branches of the Health Insurance Fund and with the local Commissions for Patients’ Rights.