Approximately 700 people with rare diseases in Kazakhstan remain at risk due to interruptions in access to medications. These are vital medications, without which patients' conditions can rapidly deteriorate. Experts have documented cases of treatment interruptions, administrative barriers to drug procurement, and difficulties with operational funding at the regional level. These issues were the central topic of a roundtable discussion organized by the Union of Eurasian Patient Organizations in Astana, AstanaTV reports.
The meeting participants emphasized that the lack of systemic solutions could lead to increased disability and threat to lives, including children. Following the discussion, the experts intend to submit a package of proposals to relevant government agencies to address the issue.
Saida Taukeleva, Chairperson of the Board of the Union of Eurasian Patient Organizations:
"While previously, for example, this was carried out by the Kazakhstan Halkyna Foundation, the Foundation recently announced it would no longer do so, and the regulator—in this case, the Ministry of Health—announced that this entire need would be met from local budgets. However, we are now seeing bureaucratic obstacles and procedures whereby patients are simply denied access to medications by the health department in some regions, or, if there is, for example, a procurement clause already approved by the maslikhat, it is, unfortunately, being bureaucratized by letters from the Ministry of Health prohibiting the purchase of a particular drug."