Parents of children with rare diseases have to purchase drugs themselves

Even if the state must cover the costs associated with the treatment of children when these are medically insured, it does not always do this. Ombudswoman for children’s rights Maia Bănărescu said a problem in this regards is witnessed in the case of rare diseases.

In an interview for IPN, the ombudswoman spoke about a recent case when the mother of a seven-year-old boy who suffers from a rare disease made calls to the authorities so that she could save her son. The medicines needed by the minor cannot be found at drugstores in Moldova and the parents cannot buy them abroad owing to the travel restrictions imposed during the pandemic. During three years in a row, the mother got back the money spent on drugs, but for 2019 she received only half of the incurred costs.
These are concrete cases when the lack of vital medicines poses a threat to the life of a child and such cases show the authorities’ attitude to children. The parents have to cover the costs not only for drugs, but also for services that are needed by many children with genetic disorders or with atypical development.

The ombudswoman said that in 2016, when she took up her duties, a study of the observance of the rights of autistic children in Moldova was carried out in concert with the Municipal Children’s Rights Protection Division. Serous shortcomings were identified then. The screening to early detect autism spectrum disorders in children during the first months of life was later introduced. Efforts continue to be made to collect statistical data about the number of autistic children.

Maia Bănărescu said that the necessary legal framework was worked out and minimum standards were adopted, but things in the implementation process do not stand so well. The authorities always make reference to the lack of funds. However, besides money, the attitude of the responsible authorities also matters.

They invoke the lack of funds also when they need to fill the post of specialist for the protection of children’s rights who should be employed by mayor’s offices, according to the law. Currently, the number of such specialists at the local tutelage authorities is very low. Most of the times, the problems of children are addressed by the social assistant who is yet responsible also for adults in difficulty. It was proposed that the salary of this specialist who deals with children’s problems should be paid from the state budget, as in the case of the social assistant. “Why don’t they do so? The financial resources should not be invoked when it goes to the protection of children’s rights. It is even a shame for the state when it cannot fully realize the rights of such a small number of children, of not even 400,000,” stated Maia Bănărescu.

The interview titled “June 1, International Children’s Day. Children have their rights” forms part of IPN’s project “Injustice Revealed through Multimedia”.

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