Strategy to Improve Pediatric Oncology Being Implemented in Uzbekistan: Focus on Early Diagnosis and Increased Survival Rates
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Podrobno.uz [uz]
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Strategy to Improve Pediatric Oncology Being Implemented in Uzbekistan: Focus on Early Diagnosis and Increased Survival Rates

In Uzbekistan, over 2,500 children are diagnosed with malignant neoplasms or hematological disorders for the first time each year. Despite expanding specialized care capabilities, serious issues persist related to late diagnosis, medication availability, and the necessity of traveling to Tashkent. Authorities plan to transform the treatment system by 2030, emphasizing early detection, strengthening regional infrastructure, and improving survival rates.

The total number of children receiving a diagnosis of an oncological, hematological, or immunological disease in the country is about 5,000 annually. According to National Register data, 2,416 new cases of malignant neoplasms and hematological disorders were recorded in 2024, and 2,534 cases in 2025.

A correspondent from Podrobno.uz interviewed several experts, including Dr. Jamila Polatova, Director of the Scientific and Practical Medical Center for Pediatric Oncology, Hematology, and Immunology, Doctor of Medical Sciences and Professor; Dilnoza Agzamkhodjayeva, Deputy Director for Medical Work and Chief Physician of the center; and Lolo Kasimbekova, Head of the Statistics Department of the center, to discuss changes in the pediatric oncology system, achieved results, and existing difficulties.

Scale of Late Diagnosis Problem

More than 16,500 children in the country are under specialized observation for oncological, hematological, immunological, and some rare diseases, of which 7,897 suffer from oncological and hematological pathologies. Lola Kasimbekova, Head of the Center's Statistics Department, clarified that this group includes both benign and malignant neoplasms, so these figures cannot be directly equated to the number of children with cancer.

An increase in the number of patients under observation does not always indicate a rise in incidence; statistics are also influenced by the completeness of registration, duration of monitoring, and improved treatment effectiveness. The creation of a unified national register helps more accurately determine regional needs for medications, diagnostic equipment, beds, and medical personnel.

The stage of disease detection is critically important. The Center reported that over 70% of children with solid malignant tumors sought specialist care at stages III–IV. Similarly, late diagnosis was often recorded in hematological disorders, leading to severe complications, although the standard four-stage division used for solid tumors is not applied to hematological disorders.

Center Director Jamila Polatova noted that 'Late detection is one of the factors contributing to adverse outcomes.' Nevertheless, recent data shows a positive trend: the proportion of early detection of solid malignant tumors has increased from 23% in 2023 to 28% in 2025. One-year survival rate for oncological diseases has increased from 37% to 44.5%, and for hematological disorders—from 17% to 42%. The National Strategy for 2030 aims to raise the share of early detection to 65% and achieve a five-year survival rate of no less than 60%, but a final assessment of long-term results requires accumulating data in the register.

Causes of Childhood Oncological Diseases

Childhood oncological diseases possess specific characteristics that differentiate them from adult oncology. These diseases are caused by changes in the genetic material of cells that occur during the body's growth and development. Typically, such changes arise spontaneously, although some children have a hereditary predisposition.

According to Jamila Polatova, in the vast majority of cases, childhood oncological diseases are not linked to the child's lifestyle. Since reliable primary prevention for most of these diseases is not yet available, prompt seeking of medical help, the ability to recognize alarming signs, and accurate diagnosis take paramount importance.

Pediatric oncology requires a specialized approach and medical service because children's tumors differ in structure, molecular characteristics, response to therapy, and risks of long-term consequences. Treatment must take into account numerous parameters, including age, body mass, body surface area, and the patient's general condition.

Jamila Polatova emphasized the need for a comprehensive approach that combines morphological and molecular diagnostics, risk assessment, and the application of specialized treatment protocols. Pediatric oncologists-hematologists, surgeons, radiologists, diagnosticians, pharmacists, and nurses are involved in the work. Rehabilitation, psychological support, and complication prevention are equally important, as is the possibility of continuing education during long-term treatment. In her opinion, 'With timely diagnosis and correct treatment, many children have a real chance of recovery.'

For comparison, in high-income countries, the five-year survival rate for children with oncological diseases exceeds 80%. Achieving a comparable level in Uzbekistan requires not only improving treatment methods but also a complete transformation of the entire patient journey—from the first doctor's visit to the completion of therapy and subsequent follow-up.

Ensuring Treatment in Regions and Trips to the Capital

Currently, a significant portion of children with oncological and hematological diseases are sent to Tashkent for high-tech diagnosis and treatment. The decision to travel is made based on the diagnosis, severity of the condition, and the capabilities of the local medical institution.

Departments of pediatric oncology and hematology operate in regional multidisciplinary children's hospitals and in the Karakalpakstan Republic, providing certain stages of therapy, supportive care, and monitoring. However, the level of equipment in these units is uneven.

The Scientific and Practical Medical Center in Tashkent provides methodological support to regional institutions, facilitates the implementation of clinical protocols, conducts staff training, and carries out telemedicine consultations. It is important to note that regional departments are part of multidisciplinary children's hospitals, not branches of the center.

Dilnoza Agzamkhodjayeva, Deputy Director for Medical Work and Chief Physician of the center, reported that the National Strategy for the period 2025–2030 envisions the development of interregional high-tech complexes and the strengthening of specialized departments in regional children's hospitals. The Samarkand complex is in preparation for launch, and other regions will connect gradually. It is planned that infrastructure development will reduce the need for families to travel frequently to the capital and improve access to specialized care.

However, the task is not to completely transfer all types of treatment to the regions, but to clearly define the functions of each level of the medical system. Early detection, primary diagnosis, certain stages of therapy, complex surgical operations, and long-term monitoring require different levels of equipment and capabilities.

Unified Patient Pathway and New Diagnostic Timelines

Since 2021, an independent service for pediatric oncology, hematology, and clinical immunology has been steadily developing in Uzbekistan. Key milestones include the presidential decree of May 21, 2024, and Decree No. PP-186 of May 19, 2025, which approved the implementation of the National Strategy to combat childhood cancer for 2025–2030.

One of the main directions of the reform is the formation of a unified patient pathway, which should connect primary healthcare, district and regional institutions, and the national specialized center. Dilnoza Agzamkhodjayeva explained that mechanisms such as a 'green corridor,' electronic registration, and telemedicine consultations are being implemented to achieve this goal. A pilot project has already started in the Samarkand region.

The target time for diagnosing oncological-hematological diseases is set within four days, and for solid tumors—up to 14 days. The service's working goal is to reduce the total interval from suspicion to the start of treatment to 10–18 days.

According to Dilnoza Agzamkhodjayeva, the successful implementation of the strategy depends on the simultaneous improvement of infrastructure, increasing specialists' qualifications, enhancing diagnostic capabilities, and expanding the range of treatment. There are also plans to create an International Academic Hub for Childhood Cancer, which will unite international expertise, scientific research, advanced technologies, and training of personnel for Uzbekistan and other Central Asian countries.

Cooperation within this hub is conducted with international partners such as the World Health Organization, St. Jude Global, Dana-Farber Cancer Institute, SIOP, and Princess Máxima Center. This interaction is aimed at improving clinical programs, developing national competencies, and implementing modern approaches to treatment.

Medication Supply: Expanding the List and Supply Issues

The availability of prescribed medications remains a critical condition for continuous treatment. Even with necessary infrastructure, the absence of a specific drug can disrupt the prescribed therapy regimen.

The Center reported that the total list of medications for children increased from 89 items in 2025 to 194 in 2026. Within the framework of the WHO Global Platform and St. Jude, the list of anti-cancer and targeted drugs expanded from 30 to 53 items. The level of drug supply, according to the service, rose from 33% in 2023 to 88% currently (over seven months of 2026).

However, this aggregate figure does not guarantee the availability of every prescribed drug at any given time. Dilnoza Agzamkhodjayeva explained that one of the difficulties is the uneven arrival of drugs throughout the year, which requires separate coordination of supplies for all components included in the treatment regimens. Her task is not only to ensure procurement but also to monitor the timely delivery of medicines to medical institutions.

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The Xavfsiz Bolalik project is being implemented in Uzbekistan with the goal of helping children who have experienced violence find ways to tell adults what happened and request support. Participants in this Uzbek project teach their peers how to recognize forms of violence and inform them about places where they can seek help in critical situations. Currently, the team is developing a special platform that allows for anonymous reports using artificial intelligence technologies.

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How Teenagers Help Their Peers

The Xavfsiz Bolalik project was launched in 2025. Its participants are teenagers striving to make information about protection from violence more accessible to younger generations. According to team representatives, such as Azambek Urmonbekov and Lailo Hasanova, approximately 50 volunteers are currently involved in the project. These volunteers conduct meetings with schoolchildren and children from various institutions, highlighting different types of violence and explaining where to turn if a child is in danger or witnesses such an incident.

The team reports that the project has already reached over three thousand children through its work in five schools and five institutions. During meetings, volunteers also ascertain children's attitudes towards the issue of violence and their willingness to seek help. According to collected data, about half of those surveyed consider violence solely a family matter, while only 1–3% of respondents stated an intention to contact social services or law enforcement agencies in such a situation.

Among the factors preventing children from speaking out about what has happened, project participants cite fear of distrust from adults or a lack of seriousness regarding their words, as well as unfamiliarity with appropriate communication channels.

Why It Is Difficult for Children to Ask for Help

The complexity of the problem lies not only in a child's fears about the reaction of others. Often, children lack sufficient knowledge about what actions qualify as violence, how to act correctly in a dangerous situation, and whom to contact for help. Azambek Urmonbekov noted that for many children, the topic of violence remains little known, and initially, they are reluctant to raise the issue, not knowing an adequate response in dangerous scenarios.

In the opinion of project participants, it is easier to trust a peer than an adult. Therefore, teenagers strive not just to disseminate information but also to create a safe space where children can discuss complex life situations and learn about available methods of receiving support. This issue goes beyond just physical violence; among topics causing concern for children in various countries, cyberbullying, online harassment, pressure from classmates, and home safety issues are mentioned.

During international consultations organized with the participation of the UN, about 1,700 children from 110 countries, including Uzbekistan, participated. Among their wishes were the ability to report problems online and a demand for adults to take children's statements seriously.

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The next step in the project's development is the creation of a platform that will allow children to anonymously report cases of violence and request assistance. The team is considering implementing artificial intelligence for this function. It is anticipated that a child will be able to send a message through a chatbot, which will conduct a preliminary assessment of the report, after which the case will be passed on to a social worker to determine the next steps.

The platform is currently in the development stage. Its actual effectiveness will depend not only on technical capabilities but also on how competently the processes for handling reports, ensuring data confidentiality, and transferring information to specialized professionals are organized. Lailo Hasanova emphasized that artificial intelligence should serve as an auxiliary tool for protecting children, but the key element remains the ability of adults to listen attentively.

Information about the activities of the Ombudsman for Children in Uzbekistan was also presented during the presentation. Speakers reported that the agency received 1,064 appeals in 2024, of which only 24 came directly from children, although the source of this data was not specified.

Why One Technology Is Not Enough

Although an anonymous platform can serve as an additional channel for reporting problems, it does not guarantee that a child will receive the necessary help on its own. This requires qualified specialists, a clear protocol for responding to appeals, and the confidence of children that their words will be heard. An equally important element is preventive work: children need to be taught skills for recognizing violence, seeking support, and understanding why they should not remain in a dangerous situation alone. Adults, on the other hand, must know how to listen to a child and not devalue their experiences.

Possible areas of work include creating mutual support groups, ensuring accessible communication channels, training educators and other adults, and involving children themselves in decision-making processes concerning their safety. The Xavfsiz Bolalik project combines the educational activities of teenagers with the concept of a digital tool for reporting violence. Currently, the team is simultaneously developing volunteer activity and working on the platform, and the next important stage is to demonstrate the practical application of these initiatives and ways for children to receive real help after making a report.

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