Nongovernmental organization (NGO) Orphan Diseases of Ukraine demands to remove medicines to treat orphan diseases from the national list of essential medicines, NGO Head Tetiana Kulesha said at a press conference in Kyiv on August 15.
“Orphan diseases should be removed from government resolution No. 180 and leave them under the law on orphan patients. We are preparing a new draft resolution to come to the Health Ministry with ready documents and proposals how we see this,” she said.
Kulesha said that resolution No. 180 should take effect only when all required amendments regarding the provision of patients with vitally important medicines and medical products that are not on the national list now are made.
She said that some organizations presenting the patients who require expensive treatment several times asked the Health Ministry to expand the list with the medicines required for orphan patients, persons who have transplanted organs and adults with cancer and oncohematological diseases.
“The commission that created the national list promised to place 14 medicines [to treat orphan diseases] to it, but this was not reflected in the government resolution,” she said.
Earlier representatives of NGOs said that some patients, in particular, orphan patients, patients with cancer and oncohematological diseases and patients who have transplanted organs would lose a chance of receiving the required medicines, medical products and clinical nutrition procured using budget funds due to government resolution No. 180.
