Parents of children with rare, severe neurological disease protest at Uzbekistan health ministry over shortages of drugs and specialists

Dozens of parents and relatives of children suffering from subacute sclerosing panencephalitis (ПСПЭ) gathered outside the Ministry of Health building in Tashkent on September 9 to press authorities for better access to medicines, specialist care and a dedicated hospital ward. The protesters said they had come from multiple regions across the country, including Fergana, Namangan, Surkhandarya and Jizzakh, highlighting the national scale of the unmet needs.

Parents told reporters that many essential medicines and medical supplies remain unavailable or inconsistent, and that there is no specialized inpatient department where children with ПСПЭ could receive ongoing treatment, observation and rehabilitation. One participant said the delegation met with the minister of health and other ministry officials to present their demands. According to a source cited by Podrobno.uz, the minister pledged to form a working group that would include representatives of the parents’ community.

Families identified a severe shortage of qualified specialists as a central problem. They said that at the National Children's Medical Center in Tashkent there are only three specialists who regularly treat these patients, and that a single doctor can physically attend to just 10–15 children per day. The limited workforce, parents argue, contributes to long waits and insufficient follow-up for a disease that requires continuous care. In addition to clinical bottlenecks, families described the high out-of-pocket costs of care: one parent told reporters that since 2023 they have spent between $70,000 and $80,000 on their child's treatment.

The parents’ complaints stand against a backdrop of formal commitments by the state. In November 2025, Uzbekistan added склерозирующий панэнцефалит to the list of rare diseases for which the state must provide medications, specialized nutrition and medical devices free of charge. Budgetary financing for those measures was scheduled to start in 2026. Earlier, in October 2024, the Ministry of Health reported that more than 130 children with the disease had been registered in the country, that patients were taken under observation, a separate clinical protocol had been developed, and regional inpatient places had been allocated.

Despite those official steps, parents say that the practical reality falls short. They report continuing gaps in the supply of required drugs and in access to medical devices and nutrition covered under the rare-disease policy. The formation of a working group, if implemented, could provide a mechanism for parents to participate in shaping how services will be delivered, but families stressed that concrete timelines, guaranteed drug deliveries and staffing commitments are needed to change care on the ground.

Medical experts and authorities describe subacute sclerosing panencephalitis (ПСПЭ) as a rare and severe progressive disease of the central nervous system that develops as a delayed complication of measles infection. Its clinical course and care needs make timely diagnosis, long-term monitoring and multidisciplinary rehabilitation important for patients’ outcomes, increasing the urgency of ensuring reliable access to medicines and specialized services.

The protest underscores broader human-rights and health-policy issues in Uzbekistan: how state commitments to vulnerable groups and rare-disease patients are translated into budgetary allocations, supply chains and trained workforce. For families already bearing the physical, emotional and financial burdens of long-term care, the next steps taken by the ministry — including whether the promised working group will yield measurable improvements in drug supplies, specialist staffing and an inpatient unit — will be decisive.

Authorities have publicly acknowledged the number of registered patients and drawn up clinical protocols, but as the families’ testimonies indicate, gaps in implementation remain. The protesters left the ministry with a pledge from officials to form the working group; parents said they will continue to press for concrete actions and timelines to ensure that state guarantees for rare-disease patients are realized in practice.