The draft national program on rare disease control will be presented for examination in the second quarter of this year. The program is being drafted by a working group set up by the Ministry of Health, Labor and Social Protection, says a response provided to an inquiry made by IPN.
The working group is updating the list of rare diseases, is assessing the treatment and diagnosis costs and reviewing the form for reporting rare diseases. Even if the group was created in the middle of December and was given a month to present the updated list of rare diseases, this continues to work as the problem is rather complex, stated the Ministry.
According to the additional data collected by specialists, in Moldova there are about 1,300 persons suffering from rare diseases. The diagnosing is made at the Reproductive Health and Medical Genetics Center of the Mother and Child Institute and other specialized institutions. The diagnostic capacities are limited and the services of foreign genetic laboratories are often used for an accurate diagnosis.
The response given by the Ministry says many of the rare diseases can be treated and funds are allocated from the state budget for diagnosing and treating a number of rare diseases, such as Wilson Konovalov, hemophilia, Epidermolysis bullosa, Addison disease, pulmonary hypertension and Duchenne muscular dystrophy.
Slightly over 39 million lei was earmarked in the 2020 state budget for diagnosing and treating rare diseases. This is by over 15 million lei more than in 2019. The list of compensated drugs includes medicines for rare diseases that are provided free to patients suffering from such diseases.
