World Hemophilia Day

Today, April 17, is World Hemophilia Day Hemophilia in Kyrgyzstan as a mirror of orphan diseases

Hemophilia is a hereditary disease of the blood clotting system, in which the body does not produce in sufficient quantities (or does not produce at all) certain blood clotting factors - VIII or IX. The disease is inherited and almost always manifests itself in males. The main symptom is bleeding of varying severity, especially in the joints, which leads to pain, decreased mobility and disability.

• Without proper treatment, patients with hemophilia often do not live to 30 years of age due to massive internal bleeding, including in the brain and vital organs. Almost all patients with a severe form of the disease become disabled from childhood due to repeated hemarthrosis.

• This is a classic example of an orphan disease, in which, with government support and access to qualified medical care, patients can lead a full life on par with healthy people.

Hemophilia in Kyrgyzstan: facts and figures

📌 In Kyrgyzstan, where about 7.3 million people live, 411 patients with hemophilia are officially registered. Half of them are children under 16. Among those infected, hemophilia A is predominant - 330 people, hemophilia B has been diagnosed in 80 patients, and in one person the form of the disease remains unspecified.

• Until 2008, hemophilia treatment in the country was extremely limited: only blood components were used - fresh frozen plasma and cryoprecipitate. Modern concentrates of coagulation factors VIII and IX were unavailable. This led to serious consequences: many disabled children could not attend schools and kindergartens, suffered from viral hepatitis and dangerous hemorrhages, and did not have the opportunity to receive planned or emergency surgical care.

The situation began to change in 2008 thanks to the active cooperation of Kyrgyzstan with the World Federation of Hemophilia (WFH). The country has become a participant in several international programs aimed at improving diagnostics and treatment:

1. Twinning programs of intercountry cooperation with the USA (2009–2013), Turkey (2016–2020), Russia (2020–2022), and Italy (2023–2024);

2. The WFH humanitarian aid program, operating from 2008 to the present;

3. Global Alliance for Progress (GAP) — 2018–2021;

4. Training of medical specialists within the International Hemophilia Training Center (IHTC), including hematologists, physiotherapists, laboratory specialists, orthopedists and dentists;

5. Maintaining the World Bleeding Disorders Registry (WBDR) since 2018.

These programs have significantly improved the quality and availability of medical, diagnostic, rehabilitation and psychosocial care. In addition, the volume of state purchases of modern drugs was increased, a team of comprehensive patient care was created, and interaction with patient organizations was established. This became the basis for the strategic development of the orphan disease care system in the country.

The Future: The Path to Sustainable Integration

The experience of hemophilia has shown the importance of cooperation between doctors, representatives of patient organizations, government agencies and the government. Only through joint efforts can we overcome the challenges associated with rare diseases: from diagnostics to the implementation of expensive innovative technologies. This is the path to sustainable development of orphan medicine and improving the quality of life of patients.