The Ministry of Health, Labor and Social Protection at the start of last year planned to present the draft National Program on Rare Disease Control for examination in the second quarter of 2020, but this hasn’t been yet worked out. The working group that was designing the program stopped work owing to the pandemic.
“The National Program on Disease Control indispensably remains a priority for all those involved, while the working group will resume work when the epidemiological situation improves,” the Ministry of Health, Labor and Social Protection stated in a response to an inquiry made by IPN.
According to the Ministry, a multidisciplinary working group on areas of interest consisting of health professionals was set up to think up a National Program on Rare Diseases in Moldova. Each member of the group compiled a list of diseases that would be included in the List of Rare Diseases Known in Moldova. The lists were incorporated into a draft that includes 204 names of rare diseases. These activities were performed in January-February 2020. Later, owing to the COVID-19 pandemic, the working group suspended its activity. Nevertheless, in the course of the year, each member of the working group presented the estimated annual costs of the program of which they are in charge so as to aggregate the costs,” says the response.
In another development, the Ministry of Health said that in connection with the pandemic, the treatment of supervised patients with rare diseases became much more difficult due to the complexity of the illness, unpredicted conduct of COVID-19 and multiple epidemiological hotbeds.
Also, to reduce the risks to which the patients with phenylketonuria expose themselves when traveling to collect the special dietetic products they need, whose costs are periodically covered by the State Program, the annual quantity of necessary special dietetic products was issued at once. The samples for serum phenylalanine screening are sent by mail.
A sum of 48.446 million lei was earmarked for compensating the medicines needed by patients with rare diseases in 2021.
