Right to health: Corruption and stigma mean many children with spina bifida in Moldova being denied treatment
10 March 2015
United Nations Office of the High Commissioner for Human Rights (OHCHR) launches report
CHISINAU (10 March 2015) - The United Nations Office of High Commissioner for Human Rights (OHCHR) has today launched the first study on the human rights of children with spina bifida in the Republic of Moldova.
“Children with spina bifida in Moldova are dying needlessly and in great pain because they are not receiving the treatment that should be theirs by right. Corruption in the form of informal payments plays a part in this, as does the prejudiced view that ‘some lives are not worth living’. Tackling such stigma is essential,” said OHCHR Human Rights Adviser Claude Cahn.
“It is also vital that policies to fortify food products with folic acid, a key prevention measure, are implemented in full and in the shortest possible timeframe. Women need to be getting enough folic acid before they become pregnant. The only demonstrated, effective mode of reaching all women is food fortification.” he added.
Spina bifida is a congenital neural tube defect which, if not treated effectively, can lead to a severe lifelong disability or even painful death.
No detailed studies of the human rights situation of children with spina bifida have been carried out in Moldova. During 2014, OHCHR began rectifying the current lack of human rights documentation in this area by carrying out the study presented today. Research focused on assessing current domestic law, policies and practices in light of Moldova’s international law obligations in this area. A broad range of experts, as well as families whose children have spina bifida, were consulted in the preparation of the report.
Key findings of the research include:
- Data concerning rates and incidence of children with spina bifida in the Republic of Moldova does not appear to be accurate; each year dozens of children may not be identified for treatment.
- Stigma, negative attitudes and other obstacles currently preclude many children from having access to urgently needed surgery that can prevent painful death;
- Corruption is widely alleged as a factor in hindering access to effective treatment of children with spina bifida;
- Important policies to begin fortifying food products with folic acid entered into force at the beginning of 2015 and should be fully in effect by the end of 2017. It is crucial that these policies are effectively implemented and monitored.
The study concludes with recommendations aimed at improving law, policy and practice, and ending the extreme states of exclusion, stigma and pain experienced by children and adults with spina bifida, and by their families.
For details or other relevant information, please contact Xenia Siminciuc, United Nations Human Rights Office (OHCHR) Diversity Outreach National Consultant: +373 684 88 663 or +373 78 1000 19, by e-mail: firstname.lastname@example.org
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